All posts by Laura McKee

About Laura McKee

Hey there, I’m Laura and have been married to my husband Joel since 2003. We have 2 amazing teenage boys who make me smile every day. We live in West Sussex UK, with our cat Jasper and hens. In 2009 I was diagnosed with migraines but with medication and alternative therapies, I was able to get back to the job I loved and get on with living a happy life. Sadly, in 2014 everything changed. I thought I had an awful migraine, but the constant pain that started then has never left me. I knew this was more than the Chronic Migraine I'd been diagnosed with, but local neurologists wouldn't listen. I found a specialist in Pulsatile Tinnitus in Cambridge and my supportive GP referred me to see him. He diagnosed me with Idiopathic Intracranial Hypertension (IIH), which was presenting with atypical symptoms. This is an incurable, rare brain disease and I was told to prepare for a long journey. I was at an all time low, with no sense of purpose; grieving for the life I'd not longer have. But I decided to document my journey in a blog. I've had 6 brain, skull and spine surgeries and am on a cocktail of strong medication. I'm mostly bed bound with poor mobility: needing walking aids and a wheelchair on the rare occasions I get out. I struggled with my mental health and it all had a debilitating effect on my family. Joel and my boys are my carers and I have a carer each week day, to take some pressure off of Joel. I'm unable to do much as everything has a huge impact on my pain levels, but I taught myself to make jewellery for friends and family using gemstones and vintage beads and buttons. They encouraged me to open Paprika Jewellery & Accessories. I'd found my new sense of purpose! I loved the thought of making others happy with beautifully wrapped gifts. This and other strategies, such as meditation, help me manage my mental health. I want to share positivity and motivate others. I share my experiences to help others and through inspirational creations, writing about positive thinking and poetry, I want others to see they can still live their best lives.

The Courage and Compromise in Accepting You Need Help

A street with a blue house and many sash windows. One has a metal sign hanging out above a street level window. The sign reads HELP. The image says ‘The Courage and Compromise in Accepting You Need Help.’

The Courage and Compromise in Accepting You Need Help

I started this blog a while back but a call from my social worker to arrange a Care review made me think. I realised how much courage it had taken to admit I needed help; mainly to myself. Then I spoke to a fellow IIH warrior who told me how hard she’d found it to finally accept help, so I wanted to share my story incase it could help someone else take that leap.

Admitting you can’t cope anymore is a tough pill to swallow, whatever the reason. It’s most likely that you’ll pluck up courage to ask for, or even agree to, help from friends and family first. It took months for me to take the help that my friends and the mums at school were offering me but this became the support network that I didn’t even know we needed then!

Taking it to the next level and formally asking for help is intimidating. How do you ask for what you really need and what do you need to compromise on? This will be different for everyone but I hope my story can help you as I went from being a fiercely independent, healthy woman to owning my vulnerability by daring to acknowledge my needs.

The path to finding your perfect carer won’t be easy and will ask you to make many compromises but it really is worth it in the end. My decisions have been guided by my family which has given me courage to brave red tape so I do recommend having support. This is my story of the ins and outs of asking for and benefitting from help in the UK.

A selfie of Joel, Myself and our boys round the table in a coffee shop. I’m wearing red sunglasses and you can only see mine and Joel's face. Youngest is warring a black graphic T-shirt and Eldest is wearing a blue galaxy scene hoodie.
The McKees – We’re able to do things together because of the help we get.

Asking For Help is easy – when it’s not for you!

In late 2014 when I was very poorly, I’d asked my GP what help was available for Joel. I was worried about him taking on all the housework, looking after the kids and house whilst working a stressful, full tIme job. My GP put me under the primary care team of nurses, OTs and other professionals. I knew an OT would be able to help me so I was ok with the idea.

Then I was told of my first ever visit from an adult social worker and became apprehensive. I didn’t know what to expect but she had a kind voice and showed genuine concern when I told her we were struggling and that I was particularly worried about Joel. As I write this now, I can see that I was projecting my guilt but at this point,in my mind, I was doing okay.

The social worker talked me through ways to support Joel, suggesting I got a cleaner using my PIP/disability benefits if I qualified for them. She talked me through these and some other benefits I should apply for. We’d kept on the cleaner we’d employed when we were both working but with my sick pay coming to an end; we’d have struggled to keep her on.

When the social worker delved into my day to day living, she realised I wasn’t being completely open about how much impact my illness had on me. In true determined Laura style, I was pushing through the pain and avoiding what was actually happening to me. However she realised this and knew that I was depleted of energy, without a charger.

Orange read background for a quote that says. “You May encounter many defeats but you must not be defeated” Maya Angelou
I had to come to terms with the fact that although I needed help, I wasn’t defeated!

So I was surprised when she told me I needed help too; I’d only asked for Joel! I was in denial that I, a 36 year old mum, needed daily care. Surely she was being over the top? But she went off to make arrangements and it dawned on me that I might be more ill than I’d let myself accept.

She’d put a care plan in place for my support, which would help Joel with those things I could no longer do. The plan was to give me care every week day for dressing and getting lunch. The outcome being, that I’d have the energy to focus on being Mummy.

Literally Leaping Through Hoops

Before you can get any of this Care or support, there’s financial and physical assessments, form filling and meetings with social workers and finance officers. Then you have to decide if you’ll use care agencies or employ someone yourself so you get someone come and explain all the ins and outs of this. To be honest, this is only the tip of the iceberg.

Your written care plan is detailed and kept on file for everyone involved in your care. The welfare benefits adviser use it to make a financial assessment as to what they contribute. Luckily I qualified for full funding with care at home as I don’t need hoists etc. It’s tough but to get this support it really is worth the compromise of strangers going into your finances.

The assessment processes have to be rigorous as you’re asking for a lot, however, it can be confusing and exhausting for you. This is where you’re support network come in as even though you get used to all the annual reviews, sending off monthly bank statements and other checks; when you’re ill this can be too much physically or mentally.

Joel helps me with all of this palaver, printing and posting these statements, making phone calls on my behalf, reading the jargon letters that baffle me and completing all the forms for me. I had to be brave and ask him for help with this stuff early on as my condition means that I can’t understand them or retain the information I need to answer them.

A woman with long blond hair, I’m a white shirt, holding her hands on her temples as she looks at the camera with a sad, painful look on her face.
COMPROMISE or MISUNDERSTANDING?
Photo by NastyaSensei Sens on Pexels.com

Strength in The Face of Pain

Originally I employed my own carer with employer support to help with contracts, payroll etc. My first carer was a close friend’s daughter. She was just right for us and stayed for 18 months. She did some hours in the day and would pop back to help clear up after tea (she lived minutes away). The boys were much younger and were particularly fond of her.

I was still well enough to sort her time sheets and keep records, even having monthly 1-1 meetings to check how things were going. There were no issues unless she was sick, then we were stuck as we couldn’t cover her. On the odd day, friends would help as I got better at asking for help. Sadly we parted ways after a long period of sick leave we couldn’t cover.

When she left I tried a standard agency recommended by the care liaison team but I couldn’t cope with the plethora of different carers. They’d turn up at different times every day and I was finding it very confusing. I was losing my patience when a friend found a card advertising a local home help business – www.handsthathelp.co.uk in the village shop.

Sue who runs the business visited us and explained that she matched self-employed, DBS checked staff with clients. They covered any absences so she’d also be able to provide consistency. She was very kind and worked with me to tailor the care to my needs which as they are non-medical (I don’t need to be washed or hoisted), she could provide my care.

Two Hands in a handshake pose, A woman with manicured nails holding hands with someone else.
Taking the Hand That Will Help You Through

Carers: Finding Your Perfect Match

It’s tricky getting the right Carers for a young(ish) mum as carer companies are normally used to assist elderly clients. There have been a few mismatches where the ladies didn’t really get me and/or my needs. I guess my slightly weird (I said slightly) sense of humour and the quirks of my rare disease that no one has heard of, can be tricky to understand.

That doesn’t faze Sue though. Over the last 4 1/2 years she’s made me dozens of smoothies and sorted my meds so many times when covering, that she can show newbies round without thinking. We’ve built a great relationship with her as she’s always there to listen to me jibber jabber or work through any challenges that arise,

Anyway, when Sue set me up with a lovely gentle lady, let’s call her H, over a year ago; I knew it would work immediately. She has a calm and gentle manner and a kind face (a necessity for me). I found the cheekier side of her personality so we always have a giggle if I’m well enough! Mostly I love that her priority is to always makes sure I’m okay.

H knows what my needs are and let’s me have a chat whilst she potters, before telling me to drink my tea before it gets cold. She can be quite bossy about this 😉. H is so good at getting everything done and just gets on with the regular jobs. I don’t have to think about anything (always good] apart from ingredients for my lunchtime smoothie or family meals.

Last year, I needed someone new to take on the other days so Sue introduced me to S. I instantly understood that she was a complete loop and loved it. We giggle our way through most days but she isn’t afraid to tell me off if needed – there’s a theme! She’s straight up and openly weird so she fits right in! Joel says all my friends are a bit weird – sorry lovelies!

This is because S called me Cousin It the other day as I ended up a bit like this doing my hair! Thankfully she helped me out!
Photo by Gratisography on Pexels.com

S is clumsy but doesn’t even have to try to cause mayhem. She’ll never live down the day we went for coffee. She managed to find the only cobbles, parked right next to scaffolding, nearly tipped me down the curb and we made a hoo-hah at the cafe that was closed but looked open. We were in fits by the time we got back to the car and drove to another cafe!

S and H are the Perfect Carers for me, they get my sense of humour and always leave with a smile on their face even if they don’t arrive with one. That makes me really happy and I don’t think they know how much this means to me! Sue knows my needs so well and is great at sorting cover if someone is ill, always making sure I get lunch and clean clothes!

I’m very grateful to get the funding to have these wonderful Carers/friends in my life. They know I need a chat and a giggle whatever my pain levels, as I’ve got to live my life still. They know me so well, that I fight through the pain, but they know when to tell me to stop. With compromise in mind, I do know when to listen and preserve my energy for being mum.

All three ladies and some others that have moved on, have been the perfect match for me. Yes I’ve needed to compromise my expectations and learn to prioritise about what matters in the bigger picture. I’ve found what I didn’t even know I needed in these lovely ladies and they’ve become a huge part of my life and sanity and a quirky addition to our family.

The Courage Needed and Compromises Made

Courage -the ability to do something that frightens one; bravery or strength in the face of pain or grief.

Compromise – a settlement of differences by mutual concessions; an agreement reached by adjustment of conflicting or opposing claims, principles etc.

When I realised our little McKee bubble was near bursting point I had to take a great leap of faith… Facing the frightening prospect that this was our life for the near future, meant we needed to accept help! When I was brave enough to face up to this fact, the offers of help from friends, family and our community was humbling.

In every act of asking for help I’ve had to make some kind of compromise; usually with the differences between my head and my heart. Logically I knew that we needed the support but as a perfectionist, it’s so hard to pass power to someone else; knowing that no one else will do it your way. I’ve learnt so much about myself through this, even when it’s tough!

For me the hardest part of accepting help in a long term situation is grieving for the way you do things and relinquishing control. It comes with waves of relief but a nagging doubt that it isn’t the right thing to do. However hard it is to let someone else sort your wardrobe or take charge of your medication etc. it’s right for you and your family

Who knew that the day I was visited by my first social worker that I’d be saying any of this. My denial of my need for care took a while to ease but as soon as I understood that having the help alleviates the pressure on all four of us, the compromises were worth it. We’ve gained so much by letting others help us get through this.

So this is my opportunity to thank all of our friends and family for everything they’ve done to help us over the past 5 and a half years. Of course we couldn’t have managed without the care I’ve received from the pros so I can’t forget to share my gratitude for everyone who’s cleaned our loos, swept the floor and fed the cat on their way.

Yes, accepting help meant I didn’t spend as much time with the boys when another mum picked them up from school and that the kids shirts don’t get washed in time for ironing day every week. I hate not being able to make my own lunch and the not choosing my own knickers thing is just weird; but in the end it means that I’m able to be the best mum I can!

So we appreciate every kind word, every helping hand and every ounce of your belief in us. I cannot express how much it means that we get the help we do to give Joel a bit of a break and the kids one less thing to do. That help that allows me to conserve my energy and means that we get more time for fun stuff and more opportunities to spend time together.

So I’ll be sending positive energies when the social worker visits in September so that she understands that despite some improvements through surgery, I’m still in constant pain however much I try and hide it. But my main reason for writing this post was to let other chronic illness warriors know to take the hand that offers you help! – just do it!

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Spotlight on the fundamentals of the Infinite Dreams Collection!

Writing this blog allows me to raise a spotlight on the fundamental aspects of my Infinite Dreams Collection. It’s not all about jewellery designs so I wanted to share with you how the poem and designs linked to self care and acts of kindness. As I considered my core beliefs for my loyal customers and supporters it developed into this…

Pinterest Graphic- Flat-lay image on a marble effect base with a boho style green and yellow scarf and yellow tea light, highlighting the Yellow Kyanite Infinity Necklace. Wording below says 'Spotlight on the fundamentals of the Infinite Dreams Collection.
Spotlight on the fundamentals of the Infinite Dreams Collection!

Having chronic illnesses affects everything, especially my relationship with Joel and the boys; which has only become stronger. The boys, Joel and the rest of my support network inspired the poem and the designs.

As I thought about my own experiences with chronic illness and mental health, I realised I had an insight into how many of my customers were part of other’s support networks. So many are either looking out for someone with chronic illness or someone who deserves a boost.

My love of helping others meant I was able to create a range dedicated to gift giving and valuing self care. An infinity range was the ideal choice for launching my new look shop aimed at care givers/friends of and those with mental health and/or chronic illnesses.

My very first collection had been on my mind for a while so when I needed time out for 3 major surgeries last year, it gave me time to consider the purpose of Paprika Jewellery & Accessories. I wanted to take it to the next level. I used my time out to train in everything handmade business related and I learnt so much!

How Chronic Illness and My Family Enabled Me To Dream

Becoming chronically ill has encouraged me to dream and I’ve worked hard to turn those dreams into reality. Chronic illness has enabled me to build even tighter knit relationships with my boys and a much deeper connection with my husband. They keep me grounded and empower me to to be the best I can and to live the best life I can.

They’ve encouraged me to keep going even when the battles I’ve faced have been beyond tough. They’ve helped me believe in myself again and to use my limited energy to keep pushing towards my dreams; when many would want to give up. Their support has made me feel less guilt about choosing to only give my time to true friends.

The McKee family at our favourite restaurant in Brighton

How my amazing friends inspired this new collection

When I decided to make a jewellery gift for one of my true friends after about 9 months of time out for 3 major surgeries, I had a moment. I was drawn to using an infinity charm in the necklace I was making for her and the phrase ‘Infinite Dreams’ came to me. I knew this was a sign and that simple necklace inspired me to create more using this idea.

I began to explore what the idea of infinity meant to me and why that charm was so perfect for my friend. When I look at her, I see strength, loyalty, honesty and empowerment. This lady is a fierce warrior with a chronic illness, who puts everyone else’s needs before her own. I realised why these characteristics led me to the infinity symbol.

As I researched more about the infinity symbol, I discovered how many of the designs link to the importance of your roots and the interconnected branches of a loving family. As my own family have my heart and fill my soul, these symbols became even more powerful.

The Infinite Dreams collection became cohesive, reflecting all the qualities in beautiful designs. The designs are made to empower and protect; to show unconditional love; the strength of empowerment and support from your tribe despite any battles you face.

A sunset with 2 silhouettes holding out their arms and forming their hands to make a heart when they touch.
Infinity means loving and living with your tribe
Photo by Pixabay on Pexels.com

Infinite Dreams

Infinite Dreams was ideal for creating a poem around the meaning of infinity and the symbols that represent it. The verses are based on each of the main symbols and references I wanted to include in my collection. I’d been dreaming about adding poetry into my creations for Paprika Jewellery which made me so excited for this.

The poem is the heart and soul of the Infinite Dreams collection. I’ve built the full extent of the designs around it. As you can imagine that the collection is brimming with infinity symbols, celestial charms and celtic symbols of infinity, such as the celtic knot and the tree of life symbols; which I’ve explained below. Mostly it’s just an inspirational poem for you.

Every purchase from this collection will come with a free postcard that I’ve designed with a verse from this poem. The verse will link to the symbol used in the design. I hope to eventually spread this system to all of my designs so I’d love any feedback. Just email me at paprikajewellery@gmail.com.

Glowing shadows mature in an eternal scene,

Sheltered support where branches intervene.

Through myriad roots emerge infinite dreams.

Sparkling raindrops creating a lustrous sheen,

Showered by the abundance of hope you have seen.

Through myriad shimmers emerge infinite dreams.

Comforting warmth embraces you from dire fears,

Engaged virtue by way of the strength of tears.

Through myriad wishes emerge infinite dreams.

Shooting stars spread in a cosmic grandiose scheme,

Stunned by the extent of your soul’s graceful gleam.

Through myriad flickers emerge infinite dreams.

Sleeping on rainbows, sewn with love at the seams.

Scattered crumbs from everlasting sunbeams.

Through myriad colours emerge infinite dreams.

Continuing loops knitting life, interweaved.

Unconditional love, yet seen to be believed.

Through myriad spirals accomplish infinite dreams.

By Laura Mckee ©️2019

I really appreciate your continued support and am pleased to share this with you today. However, I must remind you that this poem is under copyright. Please do not share, copy or print this image or wording for any purpose.

Collection poem meaning

The Infinite Dreams poem represents the hopes and dreams I see in my future. As this poem was the basis for the collection that would mark the reopening of my shop, it was very important that it meant something to everyone. The designs are from the symbolism used to represent eternal connections.

Infinity Symbolisation

There are many interpretations of the infinity symbol, based around there being no end and no beginning. The circles represent a never-ending attachment, such as everlasting love or a vivid connection. It’s been used for centuries with these other meanings.

Modern interpretations are that the interconnecting circles represent each side of a relationship; cementing the idea of being ‘together forever’. The symbol used in Celtic knot designs has interlacing, continuous patterns showing the continuity of life and the double infinity design means “double absoluteness.”

The Celtic theme continues with the Tree of Life, the branches and roots joined by an endless circle. This symbolises the connection of heaven, earth and all living things. A tree starts as a seed, grows, reseeds and begins the cycle again. The roots are the bond we have with our family and ancestors – representing the circle of life in all things.

Other meanings behind the symbol represents perfection, duality and empowerment. It also stands for the equality between men and women and has been used by the UN Development Fund For Women to reflect the message of endless possibilities and empowerment for women.

In the Making

As you can imagine, it was busy, exciting and occasionally chaotic in our house as I got getting ready for this launch. I couldn’t have done it without Joel’s help, especially with the photography. It’s been great to get back to making but being able to put into practice all the things I’ve learnt whilst recuperating, has been satisfying.

There are boxes brimming with beautiful Jewellery and we’ve had a semi-permanent photo studio set up in our front room with all of my updated props. We intend to photograph all of my stock once I’ve recovered from the launch – the reason this blog has taken me a while to finish editing.

I’ve been busy tapping away on the keyboard as I update the whole shop and tell my story so it’s important to the whole shop. I’ve written my new listings using everything I’ve learnt about sales and loved every minute of preparing to share my first ever collection with the world.

I’ve been sharing sneak peeks along the way but I wanted to show you my workspace. As I’m mostly stuck in bed, this is where I create. I used to have a craft trolley next to my bedside table but it used to get so messy! Joel suggested this gorgeous unit so I have a neat working space to keep all my goodies in.

Who Is The Infinite Dreams Collection For

The designs are for the fierce warriors; loyal friends; honest wives/partners and women of your family who have your unconditional love, including yourself. I want the designs to remind the wearer of the endless possibilities awaiting them if they don’t let life’s hurdles hold them back. I want the collection to inspire and empower.

All in all this is a celebration of love, family and equality. I want people to see these designs as a way of celebrating life even if there are barriers to achieving your dreams. The most important thing to remember is that although this collection is based on infinity we do only get one chance in this life so look after you and reach for your dreams today. ♾

Pinterest Graphic- close up image on a grey stone effect base of the Simple Infinity Amethyst Bracelet. Wording below says 'Spotlight on the fundamentals of the Infinite Dreams Collection.

My Etsy shop The Paprika Jewellery aims to support positive thinking by creating designs from positive themes and provide inspiration. Visit today for luxury jewellery & accessories from and for the soul. Positivity for you now and hope for a vibrant future. 

Haven’t visited my Etsy Shop yet and have FOMO? You can still check out all the Made To Measure, limited edition and one of a kind goodies from my Infinite Dreams Collection. See the whole range by clicking on this link now. ➡️

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You’ll also get free access to my resource library and I’ll send you my Free Journal Prompts with positive lines from my poems. Just sign up to my occasionally regular newsletter today. Click this link now 🔁 Strength of Tears & Paprika VIP Access

Chronic Illness Bloggers

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How Brain Disease Promised Me Quality Life Opportunities

How Brain Disease Promised Me Quality Life Opportunities text on a dark blue background. An image of blank wooden tiles with 4 spelling the world LIFE.
How Brain Disease Promised Me Quality Life Opportunities

I’ve been thinking alot about life recently. It’s been 5 years since I was diagnosed with a an atypical presentation of a rare brain disease; Idiopathic Intracranial Hypertension or IIH. It’s also been 3 years since I was medically dismissed from my teaching career and I never dreamt back then that I’d still be mostly bedbound and so sick after 6 major surgeries.

But, how could I have known 5 years ago that this disease would have such unforgiving consequences for impact myself, let alone Joel and the boys? We never considered that this disease would mean reconsidering our dreams, hopes and plans for life together.

On the flipside, I’ve found silver linings amongst this shizz! I’ve found new ways to connect with the world, my family and my own wellbeing and built an even better relationship with Joel and the boys – who’d have thought that could happen! I’d never have been able to see myself not teaching but I’ve realised that I do have other talents and other roles to fill.

So in spite of my illness turning our world upside down and inside out, I’ve realised that my brain disease has oddly promised me new opportunities. I know that sounds crazy, even for a self confessed optimist, so let me explain my how I got to this conclusion.

How do you live your life?

  • Are you a dreamer –  living in a fantasy world with unrealistic ideals?
  • Are you a planner – always being organised and making lists?
  • Are you a doer – filling every waking moment and being very efficient?
  • Are you an optimist – being confident that there’s always a silver lining?
  • Are you a realist – able to accept and deal with the situation you’re in?
  • Are you an idealist – sure that happiness is a state of mind; despite the practicalities?
  • Are you impulsive – acting rashly and taking risks without thinking it through?
  • Are you a believer – having faith in what you do or trusting that your thing is truth?

I’ve always been an optimistic planner with an organised life. Everything had a place and everyone knew the systems. I knew was meant to teach aged 5. I taught my brother in the school holidays, when he’d much rather have played cars. I planned my life as a teacher and when I got there, I continued to live, walk and dream in teacher mode for 15 years.

Joel and I met at college and we took our time getting to know each other. I found his spontaneous nature intriguing as it was the total opposite to my pragmatism. But we had a shared sense of humour and moral standing and eventually became more than friends.

Girl with medium length, blond hair making a disgusted expression

I’d describe Joel as a realistic dreamer. He adapts to every situation and gets a job done but then he’ll fantasise over idealistic homes and awesome guitars. He dreams of not having to work ever again, so he can paint and play music all day and maybe study for fun!

One of the games he plays with the boys is ‘lottery dreams’ which is pretty self explanatory. They’ve eyed up many mansions, fast cars and had myriad wild dreams. I love that Joel has always encouraged them to delve into their imaginations as playing this game’s just not my bag. Well, it wasn’t!

But then I got brain disease and my thought process changed and as time went on I knew I had to reevaluate my life plan. I had to learn to be more impulsive and grab the opportunities to live on my rare better days. I had to learn to stop doing and even how to rest; in fact I’m still learning that. But I had to get real and accept this was my life.

Questioning My Purpose

 A photograph of blue sky and mountains in the background. In the foreground is a grassy hill with a signpost saying 'why' and a ?
Why Am I Here?

Accepting this life has been a huge deal! When I became ill I thought I’d be back in the classroom after a change of migraine meds. But that didn’t happen, I was left undiagnosed for months. When I was diagnosed, I was told treatment would be a long process but I thought I’d be back teaching after a few brain surgeries. Just like that, yep really!

I was angry about this disease for ages and had a side order of guilt and despair. Quality opportunities for me were as elusive as the hope of being pain free. I wasn’t clear what my role was anymore and all that I knew was fading; I had no idea where the end point was!

It took time to sink in that ‘long’ in this case meant marathon long; life changing long. It made me question my role and my sense of purpose was destroyed. It didn’t look anything like the life I’d planned and I had no backup option. I was a mum, wife and teacher. Brain disease had pulled the rug out from under me and messed up our lives.

Living In The Shadows

A single tall and spiky green Cactus Stem
The Grieving Process Cactus

I got lost in a desert of all consuming pain and hadn’t noticed the grieving process cactus spike I’d trodden on. I ways keeling over, dehydrated, unaware that I just had to wait for the cactus to bear fruit for the sweet syrupy nectar of a quality life. I coulhdn’t even feel that cactus back then. I could only see what I thought was the fix; surgery. Read my story here.

I was living in the shadows, in danger of letting this rare condition make a total eclipse of my life. The Black Dog was snarling and snapping at my heels every day so I needed to tighten the leash. I realised that I was being sucked into a vast black hole and I couldn’t hold on much longer. I felt like I’d been left to rot but knew I couldn’t let go of the edge.

I realised I had to weigh up the quality of life I had with one of taking risks and grasping all the opportunities I could. I wouldn’t let myself succumb to the darkness so my GP sorted urgent support from a counsellor. I felt like someone had my hands and wouldn’t let go!

The counsellor pointed out the cactus spike that was stuck in my shoe the whole time! I got hold of it and let myself start the grieving process for life pre brain disease. I let my inner mid-tantrum toddler out. I needed to be heard to began to accept the situation I was in.

The grief and anger I felt meant I was starting out on an equally long journey to heal my mental pain. Joel and the boys mattered too much for me to let go so I worked out the etchings of a plan with my first counsellor and slowly I began to rise.

A Determined Woman Will Always Rise

"And Still Like Dust I Rise" Maya Angelou quote on a sunset background with a silhouette of a tree and an African elephant with a man riding it, lifting its trunk.

As I began to resurface I knew I needed more to think about than watching TV and eating. I realised I had more resources than I thought and started to use those I knew I already had. Being Mummy, Wife, Teacher and Cook was enough to still feel needed. It was a start.

When my counselling sessions finished I was in a better place mentally but physically my health worsened. I joined online support groups and found myself helping others in similar situations. I made some genuine friends but I was putting too much energy into helping those who didn’t give anything back.

I guess my nature is to nurture and I enjoyed shining some light into their day. It was a distraction from my pain too but I caught myself checking my phone every 5 minutes as it was my only connection to the outside world. This wasn’t healthy and I lost sight of shining the light on myself. I needed something more than this but I was still lost.

Then one day I was reminded that I’d been going to silversmithing workshops for years before I was diagnosed. I’d loved every minute in that workshop and my toolbox was just sitting there waiting patiently. It was time for me to rise up for myself again.

Reconnecting With The World

They say creativity can transform lives. It’s known that well-being and self worth can be improved through music, craft and art. Creative therapy involves expression beyond words. However, I’d never considered myself to be creative until I picked up those pliers and the sheet of silver. I thought that this might be the perfect soul healer for me.

I taught myself to make beaded jewellery as I couldn’t safely work with the silversmith’s tools. It was a wonderful distraction from the pain and boredom. My friends wanted to support me and I started getting orders. Soon after, I realised this thing might have potential and opened my Etsy Shop ‘The Paprika Jewellery‘.

Paprika Jewellery & Accessories Logo with 3 handrawn red chilli peppers.
Paprika Jewellery & Accessories

Joel’s recently told me that although he was inspired by my focus he’d been concerned by inability to dream. He thought I’d struggle when the day came to retire. Ok, so I didn’t retire but I’m so glad he’d bought those silversmith workshops for me that birthday.

My first sale to someone I didn’t know was such a high. Really I had no idea how to run a business, but it was an epic distraction. I took it at my own pace and any sale was a bonus back then. I didn’t realise it at the time but I’d found a sense of purpose again.

As my self esteem improved I decided to start a blog to help me process everything that Brain Disease threw at us. I was embracing the grieving process now. My blog focussed on raising awareness of my story, IIH, and challenge the misconceptions of migraine.

People loved to hear about my journey and my blog engaged others affected by IIH. I was sporadic with my writing as it was such hard work for my brain. It still is but don’t tell anyone! Yet again I was helping others but I’d found my own sense of purpose this time.

I took a total break from everything in 2018, as I had 3 surgeries. I really needed that rest and I focused entirely on being with my family. By now I’d recognised the importance of my role as a wife and mother so I took this seriously. I realised how lucky I was to be at home every day so that when the kids and Joel came home, I could just listen to them.

If I was teaching I wouldn’t have had this opportunity so I embraced it. I’ve become the family facilitator. I’ve been able to support the kids learning and build a stronger family bond than I could have done in my old life. Now I celebrate the little things too.

Taking The Opportunities

Since recovering from my surgeries I’ve been building up my energy whilst learning to pace myself. But there’s so much I want to do right now so I’m practising matching the energy I have with the energy I need. I’m ready to grab every opportunity and achieve all I can.

I still spend most days in my bedroom as going downstairs is enough for a wipe out. I can use the opportunity to write, make jewellery and rest so I can make the most of the better days, doing what matters most; being with my family (maybe even going out) and seeing friends . I still crash afterwards but it’s worth it to be with those who matter most!

I’m focusing on my new jewellery collection and the relaunch of my shop at the moment. I’ve putting into practice the things I’ve learnt about business when I was resting. I’m excited to develop my vision of writing and creating jewellery from positive themes.

Yellow banner with a sunset image with silhouettes of trees in Sussex countryside. With Paprika Jewellery & Accessories written in the sky. Next to the image it says ‘Luxury Jewellery & Accessories from and for the souls, positivity for you now and hope for a vibrant future.
Making Jewellery and Accessories to share love, hope and positivity

The potential my writing has to empower women was a key factor in my decision to create gifts or treats which bring hope for the future. It’s a bigger task than I’d expected as I’m also giving my whole shop a makeover. I pushed myself at first but realised it was too much. So I’m practising balancing work and wellbeing to achieve my goals without overwhelm.

Whilst starting this new chapter, I was approached to write for Teva Pharmaceutical’s ‘Life Effects’ Patient support. It feels amazing to be sought out to blog alongside some amazing advocates, let alone getting paid for it (boom)! I’ll be writing a blog every 2 months for them but they my health comes first, it’s slap bang in the contract so I’ll pace myself!

My bio photograph for the Teva Pharmaceutical Life Effects Patient Support site in a instant photo style frame. I’m wearing red sunglasses with wavy hair pinned back, against a back drop of evergreen shrubbery.
My Life Effects Bio photo

When I wrote my Bio for the site I had a bit of an a-ha moment as I was reading it aloud to Joel. He stopped me and pulled me up where I’d written that I was an ‘aspiring’ writer. I want to write a book and see this opportunity to work towards that, but Joel made me recognise that I’m already a writer. Apparently a talented one at that according to Joel.

We discussed why I’d written that and I ended up unpacking a lot of the self doubt I’d been feeling since being offered the role. However I’ve now pitched my first blog idea, which went down with a 100% yes straight away 🙌. This will be my next blog and I’m so happy to be using my story to help others. Keep an eye out as I’m sure I’ll keep it on the down low.

As I’m always working towards something now, I have to plan my time carefully to prevent overdoing it. Flare ups happen and still hit from nowhere sometimes so I have to be flexible about what I do each day. As I work on both blogging and getting a business going again, I have to check in with myself so I don’t burn out from self inflicted expectations.

I’m so excited to see how my hard work for my shop pans out and to see where this writing journey takes me. Believe it or not, I’m actually daring to dream a little about both of these things. There it is, I got to the whole me dreaming bit at last! ✨

The Promise of Quality of Life

How Brain Disease Promised Me Quality Life Opportunities wording on a cream background. A lady with dark brown hair is asleep on a cream soft blanket with a cream puppy in her arms.
How Brain Disease Promised Me Quality Life Opportunities

A long and winding path has brought me here; to a place where I feel incredibly lucky to be surrounded with live and support. A place where I am still achieving things even when I’m mostly bedbound, a place I never dreamed I would be.

The pre Brain Disease Laura would be proud of me now. I’m still focussed but I now dare to believe that there’s more out there for me. My surgeries have lifted the brain fog enough for me to kick daytime TVs backside and do something that matters. My optimistic view on life has helped me but finding so many silver linings along this journey has been my soul food!

Questioning my role has been liberating. If I was teaching I wouldn’t have discovered other talents and explored what I have to offer. I definitely wouldn’t have had the guts to pitch my heart to the world. I wouldn’t have discovered my naturally empathetic nature and I certainly wouldn’t have felt a need to offer positivity and light with those who need it.

A cobbled path through building at night. Lit with small fairy lights above and leading to well lit buildings at the end of the path.
The lights leading the way out of the shadows

In the lights that scatter the Brain Disease trail we’ve found morsels of glue which have reinforced my bond with the boys. Ok so maybe mixing teenagers and glue isn’t the best use of a metaphor but the relationship I have with them now is more important than I ever thought it would be. Their company is the biggest reward for getting through the pain!

I know Joel is proud of me for the effort I’ve put into my own wellbeing; which is a work in progress. His belief in my writing ability is empowering and I couldn’t run my business without his bucketfuls of support. He helps me dream and believe that I can. His trail of breadcrumbs led to my hope and determination so I could make it out of the shadows.

My perspective on life has changed completely due to IIH and has opened my eyes to the amazing opportunities out there for me. Although the positives can’t undo the abrasive nature of my pain or how it wears away on all four of us; it has shown that we can still live a quality life. So, directly because of brain disease I now rise, even stronger than before.

What has changed the way you look at the world?

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Chronic Illness Bloggers

✋ Hey there! You could really help me out. Just one minute of your time to press that share button helps me so much! You’ll literally make me do a bed-bound happy dance. Now there’s an image for you! Go on, you know you want to! 

About Laura

Introduction

Laura is a former primary school teacher, blogger, poet and jeweller living in Sussex UK. She is a positive thinking, mum of 2 teenage boys and is happily married to Joel. Laura is an IIHer, chronic migraineur, patient advocate and mental health campaigner.

After developing a debilitating brain condition, IIH, in 2014; she sadly had to give up her 14½ year teaching career. Soon after being diagnosed, she turned her life long love of writing into this blog to document her journey with chronic illnesses. This evolved into raising awareness of disabilities, chronic illnesses and mental health.

Laura runs the Mission Migraine Twitter account, which raises awareness that migraine is much more than just a headache. Laura started her own business Paprika Jewellery & Accessories after starting to make jewellery as a distraction from the pain.

She writes poetry to explore her own mental health and well-being. Laura writes about positive thinking and living her best life, despite her conditions. She hopes to inspire others to find their own sense of purpose, whatever challenges they face. Continue reading About Laura

Green background with two patterned semicircles on either side of banner. Text say 'All Confessions Are Oddessys' by Raymond Queneau

Confessions of a Bed-bound Mum Surviving Without Energy

Woman in grey vest and pink trouser sitting in a white bed with a laptop open. Bottom third in green saying Confessions of a bed-bound Mum
Confessions of a Bed-bound Mum Surviving Without Energy

What I need to confess

I often get asked how I cope with constant pain and Joel is asked daily how on earth I keep so positive. I even ask myself how I do this whole Mum act whilst being stuck in bed 85% of the time. So I’ve decided it might be time to confess that…

  1. I’ve been rejected and accepted for living in bed
  2. I’m not always positive and productive because I’m always in bed
  3. Stuck in bed with no energy, I honestly don’t cope
  4. It’s humorous how some of my ‘stuck in bed’ care is curious
  5. I realise my support network helps me survive being stuck in bed

Woman with black curly hair laying in a fetal position. She looks sad or hurt and has pulled the cream sheet up under her
Photo by Paula Lavrador

Just in case you thought I’d gone all Negative Nelly on you here, I haven’t, This post is about surviving!

But there is contemplaining in this post. I’m owning the hidden side of the warrior: the thin skinned; dirt dishing; ranting foot-stomping anti-hero. I’m owning up to my inner 5 year old, throwing her toys out the pram!

I hide my negative side, but if I’m being open about living with chronic illnesses, then I have to admit I’m not always positive and that, my friends, is okay. I need to learn to say to myself that it’s okay not to be okay, too!

Being rejected and accepted 

If you knew me before I became the brain diseased Laura, then please know that I probably don’t mean you as I have a cathartic moment here (unless it is you). Then you have a choice to make – contact me or fly away for good! Harsh I know, but…

When I first fell ill and could drive, make my own lunch and put my kids to bed; most people stuck around. But when I was so ill I couldn’t get out of bed, things changed. Some have shown where their priorities are, so if you’re waiting for me to contact you, then bad news – I won’t be. I’m too stuck in bed, in pain to do that! 

I don’t miss anyone that chose to leave my life, as such, but their selfish actions still play on my mind. What hurts most are the life event friends (marriage, babies etc.), those I thought of as close friends who no longer want to be there for me. It sucks to admit that, but I have to use my energy on my friends that get it.

I love the friends that stuck around when this disease started eating away at the Laura I was (I’m mostly all there now); the friends who’ve never doubted me. I can’t tell you how much I appreciate them accepting me as I am. Thank you to those of you who don’t bat an eyelid when I cancel plans; for sitting on my bed with your legs up, getting your own drink, listening when I ramble on and telling me off for doing anything, like that’s normal. You keep me going on the dark days.

For my full story read this: Learning To Live One Day At A Time – My story so far

*Disclaimer – this will not be as good as The People v OJ Simpson  – True Crime Story

I’m not always positive and productive

Bert smiling in his pinstriped suit, hat and white gloves, adjusting his blue bow tie. He's smiling at Mary Poppins who is dressed in pink with a pink hat and also smiling.

I wake each day hoping to do so much, but I just don’t have boundless energy. I do feel like I’m betraying you by even hinting at negativity when I push for positive energy so much. But, let’s be honest, no one can be positive every second of the day; unless they’re ‘Cor Blimey’ Bert or Mary Poppins.

However, life as a bed-bound mum is pretty shocking really. I try not to think about it in the grand scheme of things, so I fill my day with distractions. But despite knowing when enough is enough, I struggle to act on what my body is telling me. I’m in constant pain, whether in bed or seeing friends; so despite being so ill I’ll push on.

Genuinely I often feel uncertain, not knowing how I’m going to feel each day. Sometimes I can’t even guesstimate my pain level on waking, as it can change in minutes. I plan my day ahead but I’ve learnt to adapt plans. However, this is when I can be unproductive and it can result in one of these things happening:

  • I force myself through the day, thinking it will pass
  • I keep busy but end up not finishing anything in my planner
  • I forget about the one thing that does need doing
  • I don’t meditate or give my mind some space
  • I don’t move much – no bed yoga or even my physiotherapy exercises
  • I rest all day and let go or I just get really bored
  • My body decides to sleep all day, so I get nothing done

Red misted forest background with a quote by Albert Camus saying 'A Guilty Conscience Needs To Confess. A Work Of Art Is A Confession'.
Guilt for no reason is hiding anger at oneself

I find it frustrating and have so much time to think, stuck in bed day after day. I do have a Guilt Goblin that chips away at my self belief. The trail of red mist lingers with a sour taste of culpability. My self anger can last for days, but Joel’s my knight in shining armour who kicks that spurious fiend back to the Goblin Gaol and curbs the self sabotage.

I feel a little dishonest about only just opening up about how dark some of my days are. I’ve not tried to hide it, but my naturally positive outlook means I bury the negativity. I know the only person putting pressure on me is me, so now I need to find balance by permitting myself to let that anger out to break the goblin’s curse.

With no energy, I honestly don’t cope 

I admit that I feel drained and rough around the edges but I have some control so I can cope. I’m scared that If I allow myself to feel negative, there would be a BOGOF deal on. I’d end up with a double negative and they don’t do nobody no good!🙈

The problems which arise for those of us with chronic illness come with fat globs of failure and guilt. It can be overwhelming even though these feelings aren’t validated. I can use up more energy fighting the dark days; instead of saving it for better ones.

So I’ve realised that if I let myself rant, I can save my mind from splintering. My safety net is in the power of words and if I put my energy into going full James Joyce mode, letting my thoughts flow on to the page, I may make some brain space. I admit  it’s exhausting to let buried guilt free but I have to, before it poisons my future self.

To be able to cope with it all alone is too much and it isn’t fair to transfer all the pressure on to Joel. So even though it’s hard to do, accepting help has allowed us all to use our energy wisely. I can focus on being a mum and we can focus on family life.

A woman sitting criss legged on a bed in a dark room. It has one window with a blind down.
Confessions of a Bed-bound Mum Surviving Without Energy

Some of my care is pretty curious

Joel and the boys are still my main carers, even though they’re unpaid – shh! They still manage to make me laugh every day, often about my own care needs! Doing that constantly is too much to ask, so I have two Carers that help me on weekdays.

Helen and Sam are both very different characters on top of knowing my needs, we  have a good giggle most days too. They do pretty standard physical care, such as making sure I wash and eat. But they also have to cheer up a lonely, bed bound 41 year old who lives in the dark, the literal dark and sometimes the dark filled mind! 

Helen’s a gentle soul and brings an air of calm with her. She seems to have the ability to make me say and do sillines and I think I make her laugh most days! Sam’s a more recent addition to the team. She gets everything done, despite her clumsy limbs and we giggle our way through most days. She’s also owns being weird and I love that!

I’ve let you in on some of the darker sides of being a bed bound mum, so now I’m up for sharing what goes on beyond the scenes, why all of my Carers need to be on it with me and maybe have a little bit of crazy about them too… in a good way! 😜

  • They have to make sure I’m safe, especially using the walker around my room as I get over confident thinking I can do it, but I don’t always see the collapse coming or Sam falling over it herself, when she brings the extra kooky. There’s a need for me to have constant reminders not to bend over to pick up everything I drop. If I had £1 for everything I dropped each day… I’d have to um… give it to everyone that picks it up for me I guess. Then there’s my lifeline, the bane of my life. It makes me feel soooooo old, but I have had to use it once, when I fell in the shower. My boys and a carer, who’s moved on now, were here but there was a  problem as none of them responded! They all thought the noise was something other than my lifeline – a phone message or a dial tone!!
  • Doing the laundry is always a big job of washing, drying, folding etc, but I’m quite particular and my funny ways get muddled up when 3 or 4 people are doing the same job. I want some clothes rolled; my towels must never go out on the washing line; I have a specific drawer system and I like my clothes hung in a certain order. And that’s me not even me being picky! The funniest thing is that Sam often puts my clothes away inside out. I don’t really mind but one day I mentioned it to Helen. When she left, I saw that she’d put the sheet on my bed inside out and thought I wouldn’t notice – as if! As Joel puts it, he doesn’t give a shizz (sort of), but he knows how much it bothers me as a weirdo! 
  • Any carers that work for me have to know how to make me a smoothie – it’s the law! They have to understand the love for coconut anything and avocados in everything. They have to know how to use maca, baobab and cacao powder and the joys of mornings and spirulina (they stain everything green!) They have to have the patience to clean my bamboo straws and make the occasional smoothie bowl. Then they have to remember every ingredient they’ve used so I can put it into my weight loss app. I’m not fussy or anything, I just don’t have an appetite and lots of deficiencies. They have to remind me to eat 3 or 4 times! 
  • I’m used to a room full of chatter and do like a natter. I don’t mind alone time, but I just need a little bit of life to break the boredom of living in one room all the time. However, they only have a short amount of time here so they have to get used to having to tell me to shut up 3 or 4 times and have often been found backing out the door while I keep talking.  Then they have to make it out as fast as they can before I start calling down the stairs at them! They also have to try and follow my crazy brain and plot twists before reminding me what my point was or whether to just go with it! 
  • Then there’s the wheelchair – the fun of fitting it in a small car and putting it together without trapping the seat belt in the wheel (so many times 🙈). If we get to that point, it’s not as simple as it seems, then we have to make sure that we’ve parked where I can actually use it or not. Sam’s been a carer all her life but my boys do a better job driving!! 😂 Firstly she parked right next to scaffolding which made the path too narrow. Then she nearly toppled me out down the curb with no attempt to reverse. I shrieked in time and she managed to bump me over the metal ramps instead. When we arrived at the tearoom, she parked up and we ended up playing musical wheelchairs as we found out it was booked up. When we tried to get away we were already in hysterics as a couple had watched the full show from their outside table. He ended up rushing to help when my wheels got lost in traction over the cobbles and went into wheelspin. We ended up going back and driving to an alternative!
  • Then there’s the alternative remedies, Mindfulness and meditation. They bring me a herbal tea when they get here, but not if I’m meditating – then they have to leave me be for a bit longer. They have to understand bed yoga in case they walk in and I’m doing some strange movement. They have to get used to my essential oil diffuser and the coconut oil that goes on my body hair and  in smoothies. And then, only then, do they get to embrace the world of the miraculous Migracap as demonstrated below- an ice hat to help with the pain.

Laura sat in the car, wearing a brown coat. A black Migracap (hat with ice packs at all pressure points) on her head with a very pale face.
Me in pain in a Migracap.

I’m sure there’s more, but the main thing is that I’m surviving and they support they give me enable me to be a good mum. 

Read more about what I get to up to in my days here:

A day in the life 

I realise my support network helps me survive

Mix the combination of Joel and my boys with Sam and Helen and I have the perfect mix. I haven’t always had it easy with finding the right carers, but Sue who owns the caree agency is a very good friend and we’re all happy, she even comes in sometimes. I’m so lucky to be able to call my carers friends.

I can confide in both Helen and Sam and that is a crucial part of my care, especially on the darker and more painful days. Also, I’m still youngish so I need to be able to be friends with the people rummaging through my knicker drawer!

The vital role my friends and family play in my support network is crucial. I’ve spoken a lot about my friends in the past and how important their role is. Nothing has changed. Those friends that made the choice to stick by me are the people who keep my spirits lifted. 

I can’t talk about my support network without mentioning my Dad. He’d stay over when Joel was away from work, until recently. The boys have now taken on this responsibility. He still takes Youngest to swimming lessons and will be there for music lessons, engineering club and anything else pick ups, at the drop of the hat.

With all this support, I know someone will be there for me, whatever, whenever and wherever I need. The role each person that stands with and by me my through my journey is what helps me to do more than survive with this rare disease. I thrive!

The most important thing anyone in my jigsaw of support can do is to make sure I preserve energy for mum duties. They will all tell me off for talking too much and if my pottymouth alter ego is allowed out to play, well… I think I may have a sense of humour. I think that answers the how I cope question. You have to find the funny! 

Lastly…

It feels good to admit that I’m not always positive. I imagine you’d guessed, but if I didn’t feel safe from the support I get, then I wouldn’t be able to admit it and own it – well nearly. Getting better at understanding my lack of energy is an on-going study, but I’m learning that if I stop comparing myself it helps. This all helps me cope.

The support I have is undeniably what helps me be a great mum.. bed-bound or not. Those Friends, family members and Carers that form my support network are like the special shells that whisper in my ear at the end of every day that I did it. That I survived even without boundless energy and that my kids did even more than that!

What helps you cope with chronic pain or illness?

Chronic Illness Bloggers Continue reading Confessions of a Bed-bound Mum Surviving Without Energy

5 Last Chance Opportunities To Show Unconditional Love

5 Last Chance Opportunities To Show Unconditional Love5 Last Chance Opportunities To Show Unconditional Love

I’ve been thinking about all the things I wish I’d said or done and didn’t get the chance. I imagine most of us have have experienced this. So I’m going to talk about last chance central, unconditional love and how you can still have a loving relationship with chronic illnesses. I’ll be sharing 5 opportunities I believe we should take to show limitless love.

**WARNING This blog contains possible triggers surrounding death and loss of loved ones. So although this blog is mostly about love if you feel uncomfortable whilst reading this, please stop and if necessary, speak to a professional.

This blog is based on my own experiences. I am not a doctor and all thoughts are my own, other than attributed quotes. If you need medical advice speak to a professional.

Bucket Lists

Before we start talking last chances and unconditional love, I need to get my thoughts on  Bucket lists off of my chest and I need to ask you this:

If You Had Only 24 hours left to live, What Would You Do?

I’m asking, because there’s myriad possible answers so choosing one becomes, well, tricky! I guess Space would be a mission 😜. I guess this is how bucket lists became a thing, but I’m not one for that kind of idiot box cheese.

two green pails on ground
Photo by hitesh choudhary on Pexels.com

I mean, why write a list of things you want to do before you __⌛, when you could just get up off your arse and do them?  In my opinion, the idea’s been hijacked by social media disease and become another thing you have to have!

Don’t sit around thinking and planning, get on and do the things you dream of because one day you may no longer have a choice. If you have the chance to do what you dream of every day, then go for it. But chuck that icky bucket!

** Of course when someone is diagnosed with a terminal or degenerative illness, they should grab that bucket and do everything they can. 

Chronic Illnesses and Last Chance Decisions

Having a chronic illness can change your viewpoint and may need you to adapt your lifestyle, meaning you may miss opportunities. I think this has the potential to create a shift in your decision making.

You might:

  • Grieve for what could have been or
  • Choose to take a different path and make the best out of the situation
  • Feel held back from taking chances
  • Be left in a position you’d never imagined could be you.
  • Change what you thought of as or
  • Feel that unconditional love has reached its limits
  • Become dependent for support with money, travel or childcare
  • have your partner or child become your carer
  • Feel too sick and weak and remain where you are
  • Might take opportunities, even when you feel worse after doing

When you’ve been given medical clearance, be kind to yourself,  showing unconditional love to yourself before you give it to your loved ones. Please don’t let those countless opportunities pass you by just because you have an illness.

My Own Last Chances

These are the stories of last chances I wish that I’d taken had I known it. **This may be distressing reading.

As a Mummy I’ve felt the loss of my baby born unresponsive and whisked away from me. On the ward, the cot by my bed lay empty. Joel and I were told he was having a 4 hour fit. Not knowing if he’d make it or have brain damage, I feared I wouldn’t get the chance to hold my boy alive. We’re very lucky as he pulled through at the last minute. He’s more than fine now, but this still haunts me. It’s the worst last chance I ever had to imagine.

img_3377
My lovely Nana

As a granddaughter I’m sad that my husband never met my Nana. She got sick not long after Joel and I started seeing each other. Sadly she died 2 weeks later, so I never got the chance. If the odds had been stacked a little differently, she would have welcomed him with loving arms and adored our boys. She’d have been an awesome Great-Nana.

As a daughter in law I’ve wished many times that my boys had been able to meet their Grandad. Nearly 14 years on I still regret that distance mattered. That 5-6 hours in a car was so far for us then, so he only got to hold Eldest once. How I’ve wish he could see how immense both our boys are and that we’d see him fill with love and pride. He’d have got to play his pranks on them and taken them on many spontaneous adventures, I’m sure.

As a wife with an incurable brain disease, I’ve seen my husband’s face as I go down for brain surgery. Surgery with a likelihood that it’s fine, but no mistaking the less than 1 in 10,000 chance of a stroke or worse. I see that last forlorn glance as our eyes meet when I leave the ward. Then I see the relief when they wheel me back.

Unconditional love
Relief That I’m Safe After Surgery

Last Chance Decisions

When I was first diagnosed I knew one thing was never going to change. I knew that Joel was always going to be there for me as I knew our love was unconditional. I knew how strong our relationship was from when we nearly lost Youngest.

As my condition got worse, I realised that I was grieving for the last chances to live the old Laura’s life. I gave up for a while and it got messy at times, but Joel put mine and the boys needs first, much more than I could have comprehended at the time.

I can’t even contemplate what he’s been through when I was so ill. I began to realise how many opportunities had been taken away. I pushed my body but I soon learned I needed to listen to my body.

Balancing Needs and Wants

When I finally realised I needed to create balance we could begin to understand our new normal, but still be The McKees. I still wanted to do more but I couldn’t ignore the needs of my family. As I can’t plan for how I’m going to feel,

On a better day we make the most of it but then spending days in bed to recover. We take it day by day and grab every opportunity we can. I’ve realised that we can only control what’s happening, right now!

Living for Now

missed opportunityThere’s myriad opportunities to take a chance every day. I wonder how many we miss and how many might be seen as successes, or if it’s as Thomas Edison said..

I have not failed, I have just found 10,000 ways that won’t work.

Imagine all those missed opportunities because we think there’s more time. Time to grab chances for us or to show kindness to others. We never know a situation, so little thing we do, may make their day.

Affirmations encourage us to grasp opportunities as they arise. It helps us live for the moment and grasp last chances experiences. One such as ‘I let go of fear and guilt’ help me restrain the little guilt demons that haunt me!

When it comes to the future, if I use the ‘I am courageous’ affirmation, I know that everything is going to be okay. If I say ‘I surround myself with positive people’ I know Joel will be there for me if I need him.

I’d love you to experience the freedom and comfort these cards bring, so you can grab the set of positive affirmations that I’ve made for you. They’re only available until March 31st and I’ve put the link at the end of this blog post.

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Free affirmations printable download

Taking a Chance on Me

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Joel and I in 1998 in my last year at Uni

Joel finished his degree a year before me and that left him having a huge decision to make. He had to base it on the 7-8 months we’d had. Thankfully Joel decided to stay in Canterbury working in a supermarket for the year.

I didn’t realise how much commitment he was making at the time and I wonder what would have happened if hadn’t taken that gamble on us. We moved to Sussex and our level of commitment stepped up a notch when we bought our first flat. 

One day we were talking about the future and he just said ‘shall we get married then?’ I seriously thought he was joking but he wasn’t, so I agreed. It wasn’t planned so that there was just a thought in Joel’s mind and he ran with it was part of the magic.

We married in August 2003 and still balance each other perfectly. He has encouraged me to take more chances and I’ve helped him be more focused and plan more.

Unconditional love

Unconditional love is a powerful term, meaning love and affection without limitations; when you’d do anything for that person no matter what. This is usually between parent and child and is the sentiment behind marriage vows; a promise to love no matter what.

Unconditional love is something you have to work at and develops over time, rather than the ideal of love at first sight – sorry romanticals. You shouldn’t ever feel like you’ve failed if a relationship doesn’t work and is never a reason to stay in an unhealthy relationship.

“It is a minute-by-minute decision by both parties to remain committed to each other… Love is expressed by a person’s actions… [and] best expressed when a person chooses to put another’s needs above her own.”

Everyday Health Article

5 Last Chance Opportunities to show unconditional love

These points are based on my experience of 21 years of very few arguments, raising 2 boys who usually handle disagreements with respect and empathy and 15 years as a Teacher. We take opportunities to show unconditional love. These are my own opinions and ideas. * However, If you feel you need relationship support, please seek professional advice.

  1. Never go to bed on an argument. If an argument is over something small, take 5 and consider whether it’s worth wasting time. It could take just one of you to back down first, especially if you’re the parent.  You may feel wronged but apologising for how you reacted is likely to dissolve the tension. If it’s more serious with your partner, you may not feel ready to make up but be honest and say ‘I’m not ready to talk about this tonight.’ Try to plan time to talk properly in the morning. Then say good night. If it’s with your child/ren, tell them you love them but you don’t like what they’ve done. This needs to be made age appropriate but try to make as little drama as possible and say goodnight as usual. You can reinforce it in the morning. When you talk about it, be specific and don’t attack. Try this structure: ‘I didn’t like it when (action) because it made me feel (_). It was because (obstacle) I’d prefer it if (ideal solution). Teach your kids this too so you can all make up quicker!
  2. Good relationships are built on trust and loyalty
    Trust and Respect

    Build your relationship on trust, honesty and respect. In any relationship you learn how to deal with conflict. This TED article (although about the workplace, it has six great tips). Positive language and actions are important to acknowledge. Reward positive actions with a note or a little treat for adults as well as kids. If you show you’re noticing the small stuff, it makes the big stuff easier and you’ll build layers of trust. Be aware of how you bring up issues within the family. It’s vital that any problems are addressed quickly and honestly. Use the structure in #1 regularly so it becomes normal. Embrace vulnerability so hearing what others say becomes much easier. Creating an environment where listening is valued is so important for building respect. When you know that what you say matters, you will become more confident and positive. When you become positive, you will inspire positivity. The cycle of positivity, reward, positivity begins!

  3. Put their needs above yours. When you decide to share your life with another human, you’re making a commitment to meet their needs. You’re there to grow together in any form of relationship. As adults our emotional and physical needs can be met too by cooking a nice meal or taking them on a surprise holiday! The point is, is that you think about your partner, so my fellow bed livers, we can meet our partner’s and children’s needs from our sick beds by asking about their day. If you’ve got a busy life, don’t let this get lost in life noise, don’t take your relationship for granted. We’re all different so some of us need extra support to do this, but if you meet their needs they’re more likely to reciprocate. It may be something to discuss in your relationship.  If one person in the relationship becomes dependant due to illness or disability then this can create strain, but you can still meet your partners needs, you just need to think it through. If you have young carers, meeting their needs can be a worry, but be reassured that you can still do this. If you want some tips, read more here.
  4. Be Affectionate with each other. With children it’s easy, they’re usually pretty affectionate unless their teenagers, although we still give ours a kiss goodnight. (boom, down with their street cred😜). It’s really important to make the effort in our adult relationships because “forms of physical affection…were strongly related to the…satisfaction the participant felt with the relationship and the partner.”     Psychology Today We’ve found that establishing affection at any transition, such as waking up or getting home, we’ve become more affectionate and it deepens our connection (yes still, after 21 years). Those hugs and kisses build positivity and happiness. Although some find public affection difficult, I think it’s important in a relationship; especially around your teenage children! We’ve always loved to hold hands in public (although trickier in a wheelchair). “Affection produces feelings of intimacy, security, significance, and respect in a relationship.” Everyday Health
  5. Show them how much you love them.

They say that actions speak louder than actionsandwordswords! So show you how much you love them by getting creative. Whatever works for your kids: show your love by slipping a note in their lunchbox, sitting playing Lego for hours, leaving notes on the fridge and snuggling in front of a movie. With your partner, focus on them regularly to keep a healthy relationship: giving a foot rub, sending texts during the day, writing poems or creating art from photographs!or organising a date night. And don’t forget to always listen to them! Make what you do romantic and do it at least once a week. Just don’t be repetitive. Or creepy. Or boring. Or immature. Or creepy….

In conclusion

In my opinion, if you wait to do the things you love, you may just miss that chance. Bucket lists and waiting for another day may mean that you missed your chance. If you ever missed that opportunity to show your love and something happened, well….

If you’re reading this with a chronic illness, then this can be even tougher for you to think about. I’ve tried both waiting and pushing through, but in the end I’m up for taking a chance.

Someone took a chance on me and we’ve built conditional love for each other and our boys, of course. But we’ve had many tough times and we’ve been lucky enough to make it through. I hope someone has or will take a chance on you.

I make sure my children know how much I love them every day. I make sure to kiss my husband every time he leaves the house and when he gets home.

Don’t wait to do anything, show you love your someone at every opportunity and don’t sweat the small stuff. We never know what’s about to happen…

Affirmations for a better you
Positive Affirmations for a Better You

You can help yourself achieve the things you want to do today using Affirmations. I’ve mentioned these above.  I’ve created a set of Printable Affirmations that would for setting the tone for a good day Grab a copy of this when you sign up to my occasionally regular newsletter today!  You still have until the 31st March to get your free printable. 

Sign up for your Printable Positive Affirmations Freebie

I make sure my children know how much I love them everyday. I make sure to kiss my husband every time he leaves to go to work and as soon as he gets home.

My point is – Don’t wait to do anything, show you love someone at every opportunity and don’t sweat the small stuff. We never know what’s about to happen! So, if you start living for now, today, then what would you choose as the first thing you’d do?

Chronic Illness Bloggers

Continue reading 5 Last Chance Opportunities To Show Unconditional Love

5 Secrets for a Strong Relationship with Teenage Carers

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5 Secrets for a Strong Relationship with Teenage Carers

Young Carers

According to the ONS (Office for National Statistics), there are 149,000 young carers aged between 15 and 19 – about twice as many as in the 10-to-14 age range. [There are about 23,000 children under 9 who are carers].

There are about 50,000 Young Carers looking after someone with a Mental Health Condition in the UK. There are thought to be 3 in 5 Carers who have depression themselves, due to their role.

I aim to share the secrets that have guided our journey. They’re intended for younger families, caring for any family member, but are aimed at those with a teenage/young carer. I’m even sharing some free printables for you at the end of this post.

This advice is based on my experienced teacher viewpoint, but mostly that of a bed bound mum of 2 teenagers, who happen to be my Carers. It’s been tough, but we’re stronger than ever, as a family and individually, because we’ve worked at it!

My family

As the teen years approached our family, I feared the worst; especially as I was now chronically ill with a debilitating brain disease. How wrong could I be? I absolutely love it. We’ve just adapted our parenting style by listening and responding to each other.

With strong foundations, that Joel and I had worked hard to build together, it wasn’t hard to tweak our interactions. As our boys grow into young men, at 13 and 15 and 6ft+, we’ve found we actually enjoy spending time together – I know, crazy right?

I’m incredibly proud of both of them for all that they achieve. Their teachers recognise their awesomeness and they amaze me with what they achieve, both in and out of school. That they’re able to do so well, with so much else to deal with, is exceptional.

But I’m not delusional! I know not everyone has this and our life isn’t perfect either (erm – teenagers and brain disease involved). However, we’re a happy and loving family with amazing relationships. They are my motivation to keep positive every day!

If you want to find out more, read My story so far

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The McKee’s mucking about Christmas 2018

Parenting Styles

The secrets I want to share with you can be implemented into your family with just a little work. We are have our own parenting styles and there’s no right way. So it’s normal to go through phases of feeling like we’ve sussed it and others like we’ve fluffed it!

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So even if you’re a nailed it with some to spare parent; a doing your best, fair and square parent; a making a mess, laid out bare parent; a higgledy piggledy, up in the air parent; a tearing out your hair parent or a feeling guilty you’re not there parent, these secrets could work for you.

 

What Does Caring Involve For Me

I have a PA (carer) every weekday lunchtime, from an agency providing consistent care. These are some of the things I need help with:

  • Waking up after sleeping all morning,
  • Make me lunch, normally a smoothie as nausea stops me enjoying food
  • Making sure I have accessible water
  • Helping me to get dressed as needed and getting out my clothes each day
  • Picking anything up I drop as I can’t bend down
  • Do chores I can’t such as laundry, emptying bins and making beds
  • Preparing meals or freezing food for another day
  • Organising my medications
  • Enabling me to be more involved with the boys e.g. supporting us bake cakes
  • If I’m well enough taking us out for a cuppa or to the shops

I have a great relationship with my carers and we always have a giggle. I need laughter in my day and they bring it! They’re also always there to listen.

The Impact Caring Can Have

Being a young carer can have a big impact on the things that are important to growing up

  • It can affect a young person’s health, social life and self-confidence.
  • Many young carers struggle to juggle their education and caring which can cause pressure and stress.
  • In a survey, 39% said that nobody in their school was aware of their caring role.
  • 26% have been bullied at school because of their caring role.
  • 1 in 20 miss school because of their caring role.
But young people can learn lots of useful skills by being a young carer.

Carers Trust – Young Carers

When we realised what life was going to be like, Joel and I didn’t want the boys lives overshadowed by caring. We’re lucky enough to have PAs, so the boys don’t miss school, but it can be hard to make school aware of everything they carry with them.

Worry and anxiety have affected their mental well-being and both boys have had to learn how to cope with complex feelings. Life as a young carer is tough as we can see in these quotes.

Carers UK’s annual survey (2015) with over 5,000 carers across the UK revealed that 84% of carers feel more stressed, 78% feel more anxious and 55% reported that they suffered from depression as a result of their caring role, which was higher than findings in 2014.3

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 I’ll discuss how we manage teenage mental health in my 5 secrets below.

Being My Carer Every Day

The boys bring me breakfast and dinner make sure I have water and snacks every day. They know how to support me physically and sort anything Clumsy McClumsypants here drops or spills; like the glass of water in (yes IN) my bedside table this morning.

They need to know what to do if I press my life line and what to say to the Lifeline care team. They’d have to stop playing Xbox and may need to support or help me up if I fell. They may need to help calm me down if I was having a panic attack.

The boys have had to get used to another new cleaner being in their personal space and form bonds with my PAs. They’ve been carers for 4 years now, so are used to it, but there’s still restrictions, such as having to be quiet each morning while I sleep.

They told me the other day that their friends have to do more chores than them. My response was to ask if their friends have to make sure the house is secure and answer a doorbell every time theory mum drops something. I said I was clumsy, didn’t I?

Building a Team

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How many kids would go to their parent and tell them they don’t do as many chores as their mates? This is just one example of how we’ve worked hard to build a family dynamic based on trust, honesty, empathy and care.

We’ve all had to learn coping skills and adapt as time goes on. The stress shows at home mostly, so it’s been important to use the same strategies around their behaviour. This has led to the strong relationship we have now.

As they’ve grown up and I’ve become a little bit more stable and aware, we’ve trusted them with more responsibility. We’ve just managed two nights with Joel went away for work. My Dad (who’s always stayed before) was just down the road if needed.

They wanted to cook tea unsupervised and probably not the tidying up afterward. They have to put the hens to bed, safely away from any foxy loxies and check Jasper Cat is in for the night. I had to be trust they would put the house to bed securely too.

They amazed me with how they coped with all this responsibility. There was no time to think about having house parties or sneaking out the house to meet up with a friend! (not that we’d know anything about ever doing that).

The way Joel and I choose to do this at the beginning, has shaped how we’ve handled the cards we’ve been dealt. Everyone chooses their own path, so I’m not making any comparisons. this is just my experience. Everyone’s path is unique, so follow yours.

But use my 5 secrets to help steer you. Firstly I just need to make it clear that we sought medical advice and were referred to social services for care and support. I’m not a health Care professional, so please ask for help if you need it.

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5 Secrets for a Strong Relationship with Young Carers

  1. Asking for help is the first step. Talk to your GP.  Talk to school. Ask your kids how they’d like the help. You might need family therapy so do try it, if offered. If support given is not right for you, ask for an alternative. The skills we learnt, recognised and have since reinforced; have shaped our family’s daily lives. We learnt how to talk about our feelings, whilst being respectful. and to speak honestly, without breaking trust. I recommend organising a named teacher or pastoral care and make sure to keep them in the loop. This is individual to your needs, but be prepared to fight for this, as support is in high demand. Mental well-being for you all is key.
  2. Let them be angry with the illness. Structure ways for your children to release this, safely. Help them understand that it’s the illness that’s changed everything. The whole family will grieve for life before chronic illness, so explore ways to cope with that. We used diaries, art therapy, music and a good old shout and swear session (oooh, controversial). We’ve found that music is a lifeline for every carer in the family. Being able to lose yourself in a distraction is a lifeline for carers and you!
  3. Develop open dialogue with the Young Carers in your life and find ways that allow them to discuss what they’re feeling and experiencing without fear of backlash. The silver lining of being a bed bound mum, is having time for my boys to talk to me about their day or about something worrying them as soon as they get home.
  4. Find time for everyone to set one goal at the start of each day. You could introduce Affirmations to reinforce positive thinking. See the end of the post for more details and free printables, available til 31st March 2019. Set a time to discuss at least 1 positive from their day. Create a regular time to air issues and reinforce positives.
  5. Give yourself rewards! A really important part of feeling able to succeed, is by rewarding positive language and behaviour. The rewards can be for anything, big or small. Rewards can be verbal praise, but making time for a family reward is important to reinforce positive thinking. For example, you could go out for lunch, bake a cake together or watch a movie in bed. Let them choose most of the time, but it has to be agreed by everyone. The point is to reward the whole family regularly.

To adapt these for younger children

  1. Involve school as soon as possible, both the class teacher and headteacher should know. School may offer extra support, which can be invaluable. Play and Art therapy is in short supply, so if you’re concerned speak to your GP!
  2. Talk to them about what’s happening in a way they’ll understand. Help them express their feelings using puppets, library books and roleplay (Drs/patient).
  3. Tell them why you’re going to hospital/in pain etc. They may know more than you expect, so let them lead. My rule is that if they’re asking about it, then they’re ready for answers. Just be prepared for a ‘why, but why’ session!
  4. Ask them what they want to do that day on the way to school, you may even find out more than asking at the end of the day! Start a positives jar by everyone writing (for them if needed) ONE positive from their day. Set a regular time, to open the jar and read some. My favourite pulling out ‘cuddling with my Mummy’ on a bad day.
  5. Make time for rewards, they don’t have to cost anything, just do things as a family.

A last word and some links!

I want to help others have positive experiences, even on tough days. So I’m sharing these secrets for you. Families are unique, though, so there’s no one size fits all. Take what you want from my 5 secrets, but remember these things are key:

Ask for help! Young Carers may have to do more at home than their friends, so schools should provide support and make allowances.

Make sure everyone truly understands and enable your kids to express how they feel. Create a safe environment and look out for signs that you may need to step in.

A great team relies on good communication which is honest, loyal and respectful, so be a good role model. Recognise small wins! Celebrate at least one good thing from your day.

If the life you want for your family seems a long way off or you’d like some reassurance you’re doing okay, then I hope this post has helped. Please ask me questions in the comments and tell me how you make life positive for young carers and your family.

Resources 

Carers Trust -Support for Young Carers

Young Minds – Looking After Yourself aa a Young Carer

NHS – Young Carers Rights

Carer Gateway – Advice for Parents & Teachers of Young Carers

Carers UK – Hidden Depression

Chronic Illness Bloggers

Sign up for New & Exclusives – Help for Young Carers

Do you want to be the first to know what’s coming and get your hands on exclusive deals? I’ve created a set of Printable Affirmations that would be perfect for setting the tone for a good day for Young Carers, as mentioned in Secret number 4 above. Grab a copy of this when you sign up to my occasionally regular newsletter today!

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✋ Hey there! You could really help me out. Just one minute of your time to press that share button helps me so much! You’ll literally make me do a bed-bound happy dance. Now there’s an image for you!

How To Focus To Stop Being Flooded With Worry

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How To Stop Being Flooded With Worry

The Worry Flood!

What on earth am I going on about? Worry is a part of human nature and is a shared experience. However the way everyone experiences worry is another thing…

I know this idea of a Worry Flood might sound strange, but bear with me and I think you’ll see what I mean…well, I hope so! I can only describe it in ‘technical’ terms as a weird VaVoom drop and then the rush of worry that floods you from head to toe!

More simply, this is that feeling in the pit of your stomach before your heart races! The sickening sinking feeling that joins in can last seconds or days. I imagine there aren’t many people that haven’t experienced it at least once in their lives

The extent of worrying for you and me

Unfortunately some of us (*raising hand awkwardly even though no one’s home) worry to such extent that it can cause debilitating anxiety or even panic attacks. This is when worry has gone from flood to tsunami and your techniques stop working.

You might be in a very similar situation to me, but because of all sorts of factors, you may be able to brush off that Va-voom feeling quickly. Then take a deep breath to reboot, gain your composure and can carry on with what you were doing.

However, when I forget to check myself, worry quickly swirls into a whirlwind. Guilt, doubt and fear enclose me and I get caught in the eye of the storm; in panic mode until the dust settles. This happens less and less as I’ve had help from experts.

I’m not an expert, so if you feel like this, please seek medical advice.

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Worry becomes anxiety or panic.

Worry is experienced to varying extents but everyone shares that initial adrenaline rush. That heart quickening and stomach sinking feeling, is a common experience, but there are vast differences in how you and I then react. The extent of one person’s worry is almost impossible to comprehend.

How does worry affect you? Are you a worry wort or chronically concerned? And why the heck does worry exist? First, the science geeky stuff behind what you and I feel and experience.

Why does worry exist?

Life is full of uncertainty and this is what drives solutions and new ways to look at things. You can only prepare so much for things that are going to happen, at some point. When you can prepare, you’re able to take back some control of the situation.

And that’s the key point: Control!

You only have control of what is happening to you now! You can’t control what has happened; good or bad. But you can learn from your mistakes and successes to shape your future decision making so even without full control, you forge your path.

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A lack of control… Photo by ehsan ahmadnejad

Having a lack of control over the future is often that pivotal moment when apprehension turns into worry. You can only solve possible future problems to a certain point, before you literally can’t prepare anymore.

You might start trying to predict every eventuality; asking ‘what if’s’ and going over and over problems. All of that is going to dredge that worry monster up – I’ve been there!

How to react to feeling flooded with worry

If you’re still here then I’m guessing it’s pretty likely that you’re a worrier. Hopefully you’ve learnt how to handle worry so you can avoid destruction. It’s vital that you do build these strategies up so that Worry doesn’t stop you living your best life.

I’ll throw you some life lines a little further down the page, so stick with me a bit longer and learn the skills I’ve built for the least disturbance in my life.

But first the sciencey geeky stuff!

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The Sciencey Geeky Stuff Photo by Toni Cuenca

a) You put up barriers, like sand bags, doing all you can to avoid failure. You avoid any vulnerability, that you are never budging from that comfort zone. You’ll miss out on learning about your potential and becoming a stronger person. You stop living!

b) You’ve built defences so you don’t have to worry about anyone or anything. You see where the day takes you. Not the best long term plan, but I get it, you’re protecting yourself. You could end up living a very lonely life though.

c) You let the water freeze around you, creating a protective bubble. When you start to feel uncomfortable, you give up and take the easy option! You’ll forget what the world has to offer to you.

I’ve just described 3 examples of The Stress response: fight, flight or freeze. All primal examples of how animals respond to fear. I’ve explained The Stress Response in this blog: How to Create Clarity in a Busy Mind in 15 minutes

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Photo by Darrel Und on Pexels.com

I also wanted to share this article by James Clear about The Evolution of Anxiety. James is an author and photographer who shares the latest scientific research about human habits and potential.

A giraffe makes immediate choices such as: “When you are hungry, you walk over and munch on a tree. When a storm rolls across the plains, you take shelter under the brush. When you spot a lion stalking you and your friends, you run away.”

“[M]ost of your choices as a giraffe (…) make an immediate impact on your life. You are constantly focused on the present or the very near future.”

Animals live in a state scientists call an immediate-return environment. However, as we’ve evolved we’ve lost that immediate reward of food, shelter or safety.

“Most of the choices you make today will not benefit you immediately. (..) [E.g.] If you save money now, you’ll have enough for retirement.  (..) [The things we] worry about are problems of the future.”

Humans live in a Delayed Return Environment. “[This can] lead to chronic stress and anxiety,(…) because your brain wasn’t designed to [work in this environment]”

Why do you need to know this?

You need strategies that help you respond to today’s societal expectations. You need techniques to help you avoid stress response. Ideally these need to be so practised that they’re what you turn to in a split second, when you recognise your triggers.

This takes time and dedication, working on yourself and ideally having an expert to guide you. I’m years into this and still get tripped up sometimes. If they’re available at your fingertips, you can press pause on the Worry Flood and get back to dry land.

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Build a dam to divert the Worry Flood into canals Photo by Quintin Gellar

You build a Dam by de-watering (in this case) the habits you’ve used for years. Then you learn  distractions and ways to create calm. Once you’ve done this you can use floodgates to divert the Worry Flood in to a canal, giving you more control to deal with smaller sections of the bigger problem.

Once you’ve curbed your anxieties you’ll be more equipped to counteract the Worry Flood. The less your thoughts are eroded the less you’ll struggle. You’ll be armed because use you’ve built barricades and have a safe place where to continue to grow

How it feels to be flooded with worry!

I’ve been out of my depth many times and lately I’ve been struggling;  worry that has been overwhelming at times. I’ve failed to recognise the Amber alerts and have become engulfed with anxiety and panic attacks. So I have to start rebuilding again.

I realised I’ve been stuck in this whole delayed return environment phase. Behind the scenes, I’m developing all I need to launch a better Paprika Jewellery & Accessories. But the reward is a way off yet and with the pressure I put on myself I just didn’t spot the triggers!

I’ve spent the last few years building easily accessible skills. I used them regularly so when it comes to times like this; I’d have some control to slow down the flood. When I realised it hadn’t worked, I ensured to get my routine back. Now I’ve got my sights back on my main goal of being well enough to spend time with family and friends.

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How to Focus when that flood warning is given

So I want to share my top tips for controlling the Worry Flood, by diverting the overload into canals where I could catch smaller sections of water. This allows me to use my strategies to rebuild, dealing with smaller sections of the bigger problem.

These skills have become my go to, picked up through research, forums and work with qualified practitioners. They’re personalised for my triggers, but I’m able to share them in a way that you can developthem for your own needs. Remember, it’s not just building walls and they may need you to step outside of your comfort zone! 

 My Top Tips for Worry Flooding

  • The 1st thing you do each day is set yourself just 1 goal that you commit to. This can be about anything. Check in with yourself a few times a day to see if you’re on track.
  • At the end of the day, write a done list! it feels really good to reward yourself by knowing what you have achieved and think less about what you haven’t. I try and make this really positive and celebrate things I’m happy, proud and grateful for.
  • Use a timer to focus on productivity. I do this when writing and on social media. I need to balance time spent online with energy for my family and friends. You can download a free planner here- How to Create Clarity in a Busy Mind in 15 minutes
  • Plan to keep yourself on track. I love planning, but use my long term goals to keep on track as I write my planner each week. If I don’t achieve something, I rub it out and reorganise. Breaking down a problem into chunks make it easier to control.
  • Block similar work together. For example, I find all photos I need in one go, instead of with each blog. This is just right now that I’ve explored what works for me.
  • Use music to set the tone. I really missed music when I was really poorly. I’m bringing it back in to my life gently, but with purpose. I use an album as a timer; a playlist for productivity or ambient sounds for concentration.
  • Use the notes on your phone to keep track of your ideas whenever and wherever. I use it to plan my writing or to keep track of medical notes. I know I’ll always have what I need for some control in unplanned or stressful situations.
  • Recognise the little voice in your head. Don’t miss the Amber flood warning, practising your best on the spot techniques. I write stream of consciousness rants to stop me going over something that can’t be changed. It’s also helped me stop saying sorry so often and use more positive language than negative.
  • Meditation is the best skills to learn if you worry. It helps you build layers of protection and grounds you. Learn when to be vulnerable and when to let go. You can learn quick centring techniques easily. I meditate every day and I’ll tell you why in this post. 5 Meditation Myths Stopping You Relieve Hidden Stress
  • Learn breathing techniques. It’s especially effective when for me, when I feel that first wave of worry. Try putting a hand on your heart or stomach and take a few deep breaths to compose yourself.  There are many techniques, so experiment to see what works for you. I recommend this guide: 1 minute breathing exercises
  • Live in the moment. As I’ve said, now is the only time you have control of your next choice. Step outside your comfort zone and embrace life right now. Be present and live to your fullest potential. If a planning freak like me can do it, I’m sure you can.
  • Develop a sleeping pattern that works for you. So 8 hours in a dark room at the same time each night, might be your thing, but let’s get real; this isn’t going to work for everyone. I sometimes get no sleep due to pain, bleurgh…. But if I sleep well, I cope with the pain better. Find things that help you relax and try setting a bedtime routine. You should be more equipped for handling worries.
  • Face your fears. I’ve embraced things that scare me from my bed, so try not to get hung up on bolstering barricades. Do something that makes you uncomfortable. I think you’d be surprised by how it makes you feel and the response from others!
  • Affirmations are statements you can use to manifest your potential and strengthen your self belief. They help me so much that I’ve designed a free printable available until the 31st March, if you sign up to my newsletter. Check out the link at the end of this post. Here’s a guide to use them to set yourself up for a very productive day. 5 Morning Affirmations To Guarantee A Successful Day!

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Learn from my tips to develop your own strategies for worry and anxiety Photo credit Natalia Figueredo

In Conclusion

I hope I’ve not been too metaphor happy, so these are the key points to take away:

There’s many ways to protect yourself from too much worry, so explore and find what suits you. Build up layers of protection, whilst also being vulnerable, Step outside your comfort zone and remember the power of diversions.

Fight, flight or freeze (stress response) are reactions to perceived threat. This is a primal response, but we know experience that from stress and worry. We also have to wait for reward most of the time, which can heighten our anxiety. Develop skills and strategies that give you some control and help reduce the extent of your worry.

When planning ahead, focus on leaving room to reflect. Writing your concerns can help stop you overthinking.. You can only control right now, so practise different strategies that focus on letting go of control.

*This is based on my own experiences and is just my opinion, unless referenced. If you are struggling with stopping worry overload, please seek medical advice.

I’d love to know how you focus to cope with worry in the comments! 

Chronic Illness Bloggers

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How to Create Clarity in a Busy Mind in 15 minutes

 

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How to Create Clarity in a Busy Mind in 15 Minutes

I don’t know about you but the beginning of the year is a busy brain season for me. I’ve been creating goals, working on new ideas and doing lots of training. My brain’s been on overdrive, with so much that I want to do this year! I’m going to share my own busy mind experiences with you and my top tips for clearing mind clutter.

Thinking Ahead 

Our brains can easily go into overdrive when we start acting on our goals and it’s tough keeping all that information in our heads. I wrote about planning the year ahead in this post:  How to Write Awesome 2019 Goals Without Feeling Overwhelmed

  • I’m sharing my social media plan printable with you. It’s great for anyone who wants to limit time on social media, but I did create it with Chronic Bloggers in mind. If you want productivity over busyness, grab it at the end of this post ⬇️

My problem with plans, is that I want to just crack on and forget I’ve got brain disease! I’ve always had a passion for planning, but it doesn’t always go to plan. I go full-on Laura mode, with ideas taking over every tiny bit of headspace left I have left. The bits not backlogged with blood and CSF. Ewww, sorry for that image. Wondering what’s CSF? ➡️ What is Idiopathic Intracranial Hypertension/IIH?

I’ve not planned properly, since having left teaching, but this year I got busy creating planning grids for my blog, email and business strategies. I hadn’t planned to make them, which messed up my plans. 🤔 I was trying to do it all, forgetting to review and adapt and I gave that anxiety monster a VIP pass! As I practise grounding strategies often, I was able to calm my busy mind quickly and worked on strategies for organising my thoughts.

Write things down to make sense of your thoughts

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To Do Notes are ok if they have some structure to them

 

If your brain’s overworked, get a pen and some paper and write your thoughts down. I don’t think ‘to do’ lists, are a productive way to form clear ideas from jumbled thoughts. They’re great for quick reminders, but not so great for bigger issues. So what could you use instead? Here are my top tips for creating clarity in a busy mind.

I normally use a diary but this year I decided to try a more structured planner.  Structure is important for focusing  your thoughts, whichever format is for you.

 

 

 

I brought my planner from StarCreationsCo on Etsy   It’s great because:

  • It has a yearly and monthly calendar for planning ahead ✅
  • it has a space for me to write my goals ✅ (I want those everywhere)
  • It has a monthly page of squares for bullet journaling, so I can test the idea ✅
  • It has space to plan, reflect and add your most important jobs ✅
  • Most of all it’s really pretty and I can add stickers and washi tape ✅

You can see where I’ve rubbed out where I’ve planned too much here. No filter…

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My planner has a week to view and is formatted to helps me organise my thoughts on paper

Reflection 

At the end of each day I always write 3 positive things which happened that day. There’s not quite enough space in the planner. So I’m using a gorgeous diary covered in recycled vintage Korean fabric from my friend’s lovely Etsy shop – The Vintage Bookworm. I write:

  • I’m Happy because…
  •  I’m Grateful for…
  • I’m Proud of…

It’s so important to reflect on each day, each week, each month and each year to have a success with positive mindset! Take time to celebrate your successes, big or small. Reward yourself with a pamper, a bubble bath or just a pat on the back. These rewards trigger the pleasure centres of our brain and make us want more positivity.

 

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An overly busy mind leads to overwhelm

An Overloaded Mind

When things get too much and start to become a mess in my head, I create head space by getting my ideas down on paper or notes on my phone. I’ve been creating structure so I can be productive and focused. I’ve made a social media plan a free printable for you ⬇️

 

 

My anxiety is usually from having an overloaded mind and this still gets the better of me sometimes. Structuring my thoughts and writing them down always calms my mind. I’m sharing the strategies I’ve built up over time with you and some I found on these sites;

Anxiety Canada.com  and Anxieties.com

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How To Create Clarity In A Busy Mind In 15 Minutes

 

Top Tips for Creating Clarity in a Busy Mind in just 15 Minutes

 

When One Big Problem is Bothering You

  1. Set a 15 minute timer and free write – This is a cathartic activity and works best with a real pen and paper so that you can let your thoughts spill onto the paper; clearing your mind clutter. If you avoid doing this your problem will get just bigger in your head. If you write it down, it may not seem as big a problem as you thought!
  2. Speak to someone you trust – Find someone you know is a good listener, such as your partner or good friend. Set ground rules before you start and be clear that you’ll only spend 15 minutes talking about this. Going over and over the problem will create more negativity and isn’t good for your headspace. Say it, listen and move on.
  3. Act on your negative feelings, before it becomes a problem – Are you feeling Stressed, Nervous, Frustrated or Anxious? Set a 10 minute timer and use this feeling to turn the problem into a question – e.g. Why am I anxious about going to the doctors? Then quickly list the reasons that come up. Write your answer down using positive language i.e ‘I can stop feeling anxious by writing my questions’.
  4. Be solution focused
  • Using a 3 minute egg timer – write down your problem. You can create a mind map or flow chart if visuals help you.
  • Turn over the timer – write down your negative feelings about this problem. You may have many or just one. Write them as one main sentence about why you feel that way e.g. I feel really nervous about this job interview.
  • Turn over the timer – write down what’s stopping you solve this e.g. I’m nervous because last time I forgot to say…! Be specific and don’t make assumptions.
  • Turn over the timer – think about your ideal solution or a 1st step. Write this down e.g. I’m going to make notes on flash cards so I remember to say…

Some problems will need more than 15 minutes to solve completely, but these strategies can be adapted. If you ignore these big problems they’ll start to affect your health.

How to Cope with an Overactive Mind in 15 Minutes 

  • Exercise daily – Daily you say? Yes, daily! I don’t mean a full on work out, we’re talking about 15 minutes here! You could: Take a 15 minute walk round the park, do 15 minutes of reps/sit ups etc or try a 15 minute morning yoga stretch. Exercise helps clear your mind and releases serotonin, which makes you feel good! Even from bed I do bed yoga (Yep, it’s a thing) most days. *Please make sure to check with you Doctor before starting any new exercise routine.
  • Set a daily worry/thinking time – This one might sound strange, but you can retrain your brain by setting a regular time to sit quietly for 15 minutes and let those thoughts free. This only works if you’re able to distract yourself the rest of the day as we don’t want to lose you down that rabbit hole before you get to that time.
  • Carry a little notebook and Pen – This one might seem obvious, but it’s a must. I tend to use my phone’s notes, it just needs to be portable. Offload your thoughts quickly before they get too heavy. If you’re a night worrier then keep one next to your bed too. Just set a timer for 15 minutes.
  • Meditate regularly – Many of us struggle to fit this into our lives or think it’s too hard. I’ve used meditation daily since becoming ill as it’s known for creating calm. At first work on controlling your breathing and let your thoughts come to mind. Then let them go by focusing back on your breathing. A guided meditation will talk you through this process and there are loads available for free on YouTube or apps, such as Insight Timer. This is one of the top 5 things that help me stay positive. I’ve written more on this here. These are both great guided meditations for beginners.
  • The Honest Guys Body Scan Guided Meditation
  • Jason Stephenson Beginners Guided Meditation

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Use Meditation to focus and create space for your thoughts, before letting them go.

  • Turn negatives into a positives  – Set a 15 minute timer and grab a piece of paper. Draw a vertical line half way and write everything busying your mind. Then look at each one separately and try to turn it into a positive statement. E.g I’m not sleeping well, I’m so tired  | I will go to bed early and sleep will happen. This redirects your thoughts and establishes positive language, which helps you to remain focused and find solutions quickly.
  • Use Affirmations for daily positive thoughts – I use these to focus on the big dreams, I dare to dream. They help keep me positive even on the worst days when pain and/or anxiety are off the charts! Affirmations are positive statements or intentions that tell your brain___ is totally going to happen! Using these daily can help you become who you dream of being! I’ve used them successfully for three brain and skull surgeries 😵. If you still want to be rid of negativity, I can help. I’ve created a set of affirmations for my Etsy shop and you can get your hands on a free sample today. See details below ⬇️
  • Use a strategy to reduce the time you spend on Social Media – Let’s face it, we can’t get away from social media and as a blogger you need it. I take a total break or limit the number of sites I’m on when I need to rest. I recommend using an app to schedule your content ahead. You can be more productive by planning in bulk so that you can focus on engagement for 15 minutes before you post. If this is your style then please download my free social media planner printable below ⬇️. I created it for Chronic Illness bloggers, but it can be adapted for anyone.

Social Media Planner for Chronic Bloggers

Social Media Planner for Chronic Illness Bloggers using 15 minutes Engagement time before posting

In Conclusion 

Please take away the most important message from this – You need to write your thoughts down to make sense of what you’re stewing over. Set up regular habits to kickstart a cycle of positive thinking, reflection and reward. It’s really worth taking 15 minutes to convert your thoughts into beautiful ideas or solutions and it’s just as important to look after your brain as the rest of your body! Try out some of these ideas to find what works for you!

I’d love to hear from you if you try any of these out or want to share ideas that help you. Sharing is caring and with mental health, we need to keep an ongoing conversation!

Before you go…

My Etsy shop The Paprika Jewellery aims to support positive thinking by creating designs from positive themes. Jewellery & Accessories made from the soul, for the soul.

Want to be the first to know what’s coming and get your hands on exclusive deals? Grab a 15% coupon code for your next purchase in my Etsy shop and a free printable sample of my ‘Positive Affirmations’ by signing up to my occasionally regular newsletter today!

Click here to subscribe and grab your freebies! img_2933

Chronic Illness Bloggers

5 Morning Affirmations To Guarantee A Successful Day!

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5 Morning Affirmations To Guarantee A Successful Day

Hey there, are you someone who needs a bit of a boost in your day?

Maybe you’re feeling like you’re missing the mark at work, that your relationship’s doomed, that you’re useless because you’re chronically ill or that you’re just having disastrous days.

job12-280-chim-00918If you’re a negative thinker or a self-sabotager and the life you want seems a long way off, then this post’s for you! I’ve got tips for making positive changes by just spending a few minutes a day on affirmations. There’s even science to back that up! So now with your morning coffee you can start your day the positive way!

 

What are Affirmations?

Maybe you’ve heard of Affirmations but think they sound sappy or too out there. Maybe you don’t think they’d help as you’re ok, just not as successful as you’d hoped. Stick with me and I’ll show you how affirmations help you build a positive mindset.

Before I start you off on your journey to a successful day, you need to know what the deal is. I first heard of Affirmations about 15 months ago and now spend a few minutes each day on them. I think much more positively now and want everybody to realise they can find positive in every day. Here are a few simple tips to help you!

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Set Positive Intentions

 

Affirmations help you set an intention for that day (or however long you need it for), starting with ‘I am’ for example. They’re a great tool for helping you think more positively and if used regularly, each day will be more positive! OK, so your thoughts won’t change overnight, but I can assure you that they’ll work if you stick with it.

 

 

You use something you want to feel, do or happen and write it as though it’s already happening. So instead of ‘I want to feel loved and happy’. Your affirmation says ‘I choose love and happiness’.

You may have to do a little bit of work to crack the code at first, but you’ll soon be starting your day the positive way. So if you’re feeling low or a bit meh; then this is such a simple way to structure your thoughts and create a positive loop:

positive thought = positive actions = self-worth = positive thought and so on.

How Affirmations Work

For an affirmation to work fully, you need to trick your brain. A bit like changing the TV remote’s batteries, you need to put negative and positive in the right place. Instead of matching them to a symbol, you need to rewire your thinking, especially if you’re a Negative Nelly!

To rewire your brain, you have to make Positive Polly drown out Negative Nelly. To do that, you need to say the affirmation out loud, more than once! Just like exercise to improve our physical health is repetitive, any exercise to improve our mental health needs to be repetitive. Practise makes Positive!

To Create this positive repetition, you could write them in your journal/diary, put them on a memo board/fridge or record them using a voice memo app and listen to them wherever you are. I use all 3 of these for maximum impact!

Each time you create these positive responses from affirmations, your brain kicks in the reward mechanism. I won’t get too sciencey, but if you use affirmations about your most important values, your brain will soon begin to have positive reactions.

These positive reactions create a reward, such as increasing your self-worth. Once your brain gets a reward it will want more. You’ll start thinking and acting more positively. You’ll value yourself and feel a sense of purpose. You’ll want to look after yourself more and start creating more positive than negative in your life.

I want to start you on this journey, so read on and see how much it helped me and get yourself set the 5 affirmations to start your successful day.

**Disclaimer – this won’t happen overnight! You’ll have to put the work in!

My Journey with affirmations

One of my favourite affirmations is ‘I replace anger with compassion and understanding’. When I first picked it from my set of cards, I wasn’t having the best day. I was angry with myself about something (I’ve no idea what) and almost put it back in the pack!

When I say I was angry with myself, I really mean that I felt guilty about something I probably should have done. It’s always been a habit of mine, but when I was still  processing my chronic illness I felt like this a lot!

Anyway, I left it on display for a couple of days and as suggested, I read it often and would say it too myself in my head every so often, as I wasn’t cool with saying it out loud at first. I started to feel calmer soon after making that choice to keep that card.

I started to feel less frustration and guilt and began to feel more positive. As I stuck with it, I found those Negative Nelly feelings were getting drowned out by Positivity Polly.

The more positive I felt the more positive action I took with my self care, which led to more positive thinking. And so the cycle continued and I was hooked!

5 Morning Affirmations to Guarantee a Successful Day

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5 Morning Affirmations to Guarantee a Successful Day

So this is what you’re here for. If you’ve skimmed to get here then do make sure you know what you’re doing, you cheeky thing! I’ve made one for you and a blank one to put personalised affirmations in.

You can download these here: Morning Affirmations

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I am full of gratitude and inspiration affirmation

  1. I am full of gratitude and inspiration
  2. Today is a wonderful new day, full of success
  3. I am open to positive change
  4. Today I will share my knowledge with others
  5. My ideas are worthy of being shared

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Blank Affirmation design for personalised affirmations

These are simple affirmations for success and to use each morning to set you up for a great day. Why not have a go tomorrow morning and come back and tell me about it!

If you’d like access to more free affirmations, then just sign up for my news and exclusives emails, using the pop up form or the link below. 

Sign up today for your free printable Affirmations cards

References

https://www.louisehay.com/affirmations/

If you’re really into Science then this explains why affirmations work and what effects they have on the brain. How Self Affirmation affects the brain

 

Chronic Illness Bloggers