Tag Archives: chronic illness warrior

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 found an agency that could tailor to my needs which as they are non-medical (I don’t need to be washed or hoisted)

Two Hands in a handshake pose, A woman with manicured nails holding hands with someone else.
Accepting the help that’s offered.

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.

Anyway a lovely gentle lady, let’s call her H, started just 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 S came into the picture. 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!

A person with long red, ginger hair pulled over their face with a pair of Black Rayban Sunglasses on so it looks silly,
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!

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.

Both 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.

Two people are holding hands with one lady holding a black, young person’s hand as though reassuring them. This is surrounded by a blue border with the Title at the top saying ‘The Courage and Compromise in Accepting You Need Help’. By Laura McKee Strength of Tears

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!

Chronic Illness Bloggers

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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. ➡️

If you like what you see in the catalogue or Etsy shop you can get a 15% discount code by signing up to my VIP access area.

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.

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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

How to stay sane when stuck in bed with chronic illness or recovering from surgery. An insider’s guide

Staying level headed with debilitating pain. 

Those of you that already follow my story know I’m no stranger to surgery. I’ve  had my 3rd brain stent surgery for IIH (Idiopathic Intracranial Hypertension ) on 15th November. I was aiming to get downstairs on Saturday and I made it. It’s so important to have goals to keep you motivated. I had a family day yesterday too!

But I’m going to be spending this week in bed again recovering, as expected. My pain levels are high today and I had a bad night’s sleep, but I don’t regret it. Days with family are what keep you going . My condition is extremely debilitating but I’m not seeking sympathy; I share my experiences to raise awareness!

Please note: if you have questions about IIH, any chronic illness or mental health concerns; please speak to a trained health professional. These tips are about self care and any advice I share is based on my own experiences.

I shared this selfie on social media, 10 days after surgery. It was youngest’s 13th birthday and I was in bed, fed up that I couldn’t celebrate. The response to this post has been amazing. I received lots of supportive messages and my husband, Joel, was asked at work how I stay sane and positive when I’m stuck in bed for weeks – struggling to get to my en-suite bathroom at times.

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So here’s my guide to staying sane as a chronic and invisible illness warrior! 

  • Don’t fight the pain! I used to be determined not to give in to the pain and I’d push myself to do too much too soon, making my recovery take longer. Now, I try to listen to my body and have retrained my brain to know that it’s okay to rest, This has taken years of making mistakes, until being taught to recognise and change patterns in my behaviour by my coach, Josie (details below).
  • Ask friends and family to tell you when you’re looking tired. It’s easy to miss signs that you’re flagging, but don’t shy away from asking those close to you to say if you look like you need to rest. If someone tells me I look rough I’m not offended, I just realise that I do hurt a lot and may need that pain relief!

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  • Remember your condition doesn’t only affect you. A delicate ecosystem occurs for most familes when someone has a chronic illlness. This means any change has an effect on family life. If you’re the one in constant pain, then your contribution to family life is probably limited. For example, I usually do online grocery shopping and am usually the mediator. Plan for those times when you can’t make your usual contribution. Try asking a friend to pop to the shops or do some jobs around the house, so your partner doesn’t have to do everything!
  • Give yourself time to recover. I always seem to forget how tough living with daily high level pain is or how hard recovery from surgery is. So I tend to think I’ll cope better than I actually can. Now I set myself goals and break these down into smaller steps. E.g restarting your physio or getting dressed before venturing downstairs. Whatever goals/steps you take need to be all about you! This is the time to practice self care! Maybe keep a pain diary or notes after surgery, so you can look back at what has worked for you in the past,

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  • Be honest about having visitors. Let’s be honest, the novelty of surgery soon wears off and friends might get bored with your chronic illness. You’ll probably stop getting as many flowers and cards, but hopefully your friends will still support you as much as ever. For me, receiving a text cheers me up, but having visitors (when you can) is vital! You’ll get a mental boost and it breaks up the bedroom boredom. But, if you’re in too much pain; be brave and postpone. True friends will understand and if they don’t, then you don’t need them!
  • Keep a gratitude journal. I spend time every day reflecting on what I’m thankful for. I write 3 positive things in my diary every night or the following morning, This can be anything and it’s the little things that count when you’re recovering from surgery or a bad flare. Washing my hair, managing to eat a proper meal, having a snuggle with Joel or a giggle with my boys mean so much to me in that acute pain phase. I’d suggest starting getting into this routine before surgery. It’s also really nice to share these with friends or family!
  • Meditate. I can’t explain how much meditation helps keeps me calm in hospital and in the following weeks. I download my favourite meditations (in case there’s no WiFi) on my phone and take my headphones to block out the horrible noises on a ward. They also help me sleep between hourly obs through the night! I also use techniques I’ve learnt to visualise my happy place to lie still during a procedure or anaesthetic. You can read my tips for meditation here.
  • Use affirmations to visualise positivity. Ok, so I know the word meditation may have scared you off, but stay with me! Using affirmations has been the key to staying sane through 3 brain and spine surgeries this year! I also use affirmations cards from TheYesMum  (@theyesmummum on Instagram) daily.

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My coach Josie, from Worry Freedom created personalised affirmations to help manage my worries, which are mainly about how surgery impacts my family. She turned each concern into a positive affirmation, such as ‘I am proud that my boys have built resilience’. I record these as voice memos on my phone and listen to them before, during and after my stay in hospital. They’ve helped me to stop worrying about everyone else and concentrate on my one job – healing.

  • Ask family to spend time with you in your bedroom. When you’re always in bed, it can get very lonely. So, whether it’s snuggling with Joel watching TV, having a chat about the day or watching a film with everyone on the bed; having my family come to me is so important. For example, we ate youngest’s birthday meal in my bedroom, so that I could still be a part of his special day.
  • Entertainment. I’ve always been against TVs in bedrooms (personal choice), but after my first surgery Joel set one up in my bedroom so I could watch my favourite comfort movies. It’s stayed! I rely on my iPad so when we realised this was going to be our new normal, Joel set up Apple TV so I have lots of choice. I’ve also have audible and Spotify so I can listen to gentle music or spoken word on the days when I can’t open my eyes.
  • Bonus Tip – When you’re doing better, but still stuck in bed or the house I think you need a hobby. Many chronic illness warriors craft and this helped me not to feel so lost when I’d been diagnosed. I’d taken silversmithing classes before falling ill, so I began making beaded and up-cycled creations. Now I run my own online business with an Etsy shop. I’m closed whilst I recover, but I’ll be posting more about this as I prepare for reopening. You can see what I make on my social media pages too. ⬇️

Paprika Jewellery & Accessories

Paprika on Facebook

Paprika on Instagram

Paprika on Pinterestl

Paprika on Twitter

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So these are my top 10 tips for managing to stay positive, or at least rational when can’t do anything. But hey, we’re all different and these are just what works for me, If you’ve got the money to invest in working with a coach, do it! It’s all about finding solutions and a good coach can change your outlook! I had counselling after diagnosis, when I was still grieving for the life I’d had. If you’re struggling please talk to your GP/Doctor straight away!

Are you recovering from major surgery? Do you have a chronic illnesses? I’d love to hear about what you’ve tried if you’re housebound or bed-bound. What tips do you have to keep rational and level-headed? 

Chronic Illness Bloggers

A poem for all chronic illness warriors ‘It’s okay to rest!’ #chronicillness #chronicblogs

Are you a chronic illness warrior?

Do you fight the pain everyday? Do you even get cross with your body for not doing what you want to! I do, but I’m working hard to remember that it’s okay to rest!

I hope this helps you if you feel guilty for doing nothing. Just listen to your body!

Design

It’s okay to rest!

My body fights the constant pain
And drains all my energy spares.
My body ransoms my attempts to move
Yet soothes the grief for what was.
My body tricks my brain into a spin
Though wins with time to calm my mind.
My body taunts with glimmers of light
When nights are long and sleep is gone.
My body is learning it’s okay to rest
But tests the deal that I’ve made to heal.
My body and mind still fight the pain,
But gains most when I concede to rest.
Now I believe that it’s okay to rest!

Copyright Laura McKee 2018

Chronic Illness Bloggers 

Life as a bed-bound workaholic. #chronicillness

Stopping work due to ill health usually leads to a feeling of loss and purpose. For workaholics, giving up a career just adds to the grief of a previous life. If you’re also mostly bed bound; it’s almost impossible to give in.

On being a workaholic 

Design

I’d wanted to teach from age 5 and I loved it from the moment I stepped in the classroom. I was a workaholic, working nights and weekends, to try to make a difference.

Teaching is so much more than a job, you never stop thinking about some aspect and with you take on many roles.

Design

When I had my boys I worked part time, but was still working a 40-50 hour week. A workaholic is compelled to keep working and creates a life that’s out of balance. Read more here. Being a mum always came first, but I always felt the need to be doing something. Just a workaholic in another role; feeling like I couldn’t do either role justice. In hindsight; I know I gave both roles everything I could.

Becoming Bed-Bound

If you’ve read my story, you’ll know I had to stop teaching when I became ill. When we came to the mutual decision that I should be medically dismissed, I knew it was best for everyone. However, I struggled with the reality of having to bow out, from my bed, with no farewell, after the 14+ years I’d dedicated to my profession. I still wish I’d done more, but I’m proud of all that I achieved and that I had some influence on so many little lives.

We realised that becoming bedbound had a silver lining. I could now just enjoy the most important job I had and put everything I could into motherhood, without throwing life out of balance! We love that I’m more present and less stressed. Now I love hearing the key in the lock, anticipating my boys coming to see me.

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However, as a workaholic, even a bed-bound one with brain disease, I still needed to be DOING something. So I began making jewellery and soon discovered Conscious Crafties Marketplace The site was set up to give those with chronic illness, disabilites or their carers a sense of purpose again. You’ll find this statement on the site’s homepage.

‘A community of talented artists and crafters who are living a purposeful life by changing the way humanity perceives those living with Chronic Illness, Disabilities or Carers of those affected’

This amazing community has helped me connect with others who understand what we’re going through. I’ve made many true friends and am living a purposeful life. But, I’m a busy minded person and so volunteered to help Karen (the founder) run the site. Everyone tells me I do too much, but I thrive on helping others and love organising things. But I was juggling all of this and more, from bed, and it was beginning to impact on our family time, so something had to change!

Breaking Free

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Making the best of family time

I needed to break some of the bad habits I’ve developed over years of being a workaholic. But I have the best motivation; to bring balance in to my life. I’ve looked at my behaviour patterns and found I was spending far too much time on social media. I’m now slowly re-training my brain to know that it’s okay to rest!

Josie from Worry Free told me that ‘My JOB is to heal. By giving me a role/job of healing and rest, I have that all important role we crave and am now a resting workaholic! Such a simple idea, but so effective; I’m already breaking bad habits,  doing less and achieving more. Ultimately I’ll have more quality time to spend with my family.

 

Chronic Illness Bloggers

#IIH life in the slow lane!

I’m finally posting an update after my 2nd surgery, nearly a year on, so thanks for your patience while I’ve been in the slow lane! I’ve been on a rollercoaster journey with my IIH (Idiopathic Intracranial Hypertension) over the last year.

WHAT’S BEEN HAPPENING?

In June 2017 I had my second skull surgery and 4 weeks ago I had the same operation on the left. They have removed the C1 vertebrae mass on both sides to make space for the jugular vein that was squashed; preventing blood draining from my brain. I use a plumbing analogy to explain this. If you think of the veins as the pipes, you’d remove the blockage at the top first, because if you remove the top blockage beforehand, you’ll just create a bigger blockage below. This is how my surgeons work, slowly and methodically to ensure that all surgeries are exacting.

The surgeries have been difficult for us all. I’m not scared of surgery, but I worry about how my boys and Joel will handle the added pressure. This time, I’ve asked for help from the wonderful Josie Brocksom of Worry Free who gave me strategies to help me deal with my concerns and trust that Joel would be able to cope with the additional pressure, which of course he has. She has also taught me that it’s ok to rest, so this time I have let myself stay in the slow lane so that I can heal!

I’m lucky enough to be covered by private healthcare. One of the biggest perks is having a private room of course, but I love the food too! Yes, really! I’ve been waiting to show you this photo of the yummy lunch I had the day after my surgery last year. Just look how good that was! I just had to order the same this year too!

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Before I continue, I wanted to address a question Joel and I get asked so often:

HOW DO WE KEEP SO POSITIVE?

As with everything in life, we have some choice. Of course, I have no control over how the IIH affects me, apart from my pain relief. However, I do have control over how I manage to stop my high pain levels, from affecting my mood. Myself, Joel and my boys also choose how much we let IIH affect our own lives and time together.

I’ve been able to share over 20 years with my best friend. Joel is affected by IIH just as much as I am. However, amongst experiencing all my of pain, constant worry and looking after us; he works incredibly hard in a tough job. He is also an advocate for carers through the Family Matters team across the whole of Lloyds Banking Group! He keeps me going and picks me up when I fall. He makes me laugh til it hurts and ensures that the children have emotional, physical and comical needs met. I couldn’t ask for anything more and I know I’m lucky to have him by my side at every step.

I can’t say all is peachy, as of course it’s not: I still cry, get frustrated and have meltdowns-I’m only human! Joel and the boys keep me fighting this disease and get on every day. We’re open with each other and share our experiences with others who just get it.. We also have the opportunity to raise awareness of how to stay positive when chronic illness affects a family, and we are both very proud to do this!

THE SURGERY

When the wizard has (my ENT specialist surgeon) removed part of the C1 vertebrae, he gets as close to the nerve as possible; without it being dangerous. This is only done for the few like me, by the team in Cambridge. They’ve developed procedures to reduce unwanted side effects and they explain everything so well. They are now developing other studies and sharing their findings with the medical world.

I was only in overnight both times and have a drain in which helps to limit the chance of having unwanted side effects. These are shoulder weakness, trouble swallowing and a hoarse voice. It’s too gross to show, but here are my post op selfies!

2016-feeling warm and puffy!

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2017-Looking amazing on oxygen all night due to low SATs

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The operations have both been successful. The scans show that the jugular vein is no longer under pressure and the blood can flow freely through the veins there now.

NEXT STEPS:

During my pre-op testing (ct venoplasty/venogram), my neuro radiologist found arachnoid granulations pushing on my stent and narrowing the flow of blood. These are normal lesions found in the venous channels that allow the CSF to flow into the venous channels. These are rarely found in the transverse sinus, however, and unfortunately they are growing around and through the stent in the left side. This explains why I started to go down hill again a few months after last year’s surgery, so I will need a procedure to stretch the stent and push the granulation back.

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Unfortunately, I also need a stent in the right transverse sinus, so I have been referred back to the neuro radiologist following our check up in Cambridge yesterday. It’s good to know that we are moving forward surgically and it means that I can focus on my goal of reducing the morphine even more. The transverse sinus is part of the venous system in the brain and allows the blood to drain from the back of the head. If you’d like to know more, I have a reference to this medical article here.

Last year’s surgery was such a success that I was able to travel abroad, have a 40th birthday party and generally spend more time with my family. This is my priority and as I was able to reduce the dose of morphine I take in the morning a few months ago, I now need to get back on track with that as I come out of the other side.

I’ve big plans with my family this year and although I always suffer, it’s so important that I try and enjoy my life as much as I can. I don’t know how much I will recover from this disease. This means making the most of life NOW! This is why we decided to visit the Imperial war museum yesterday on our trip to Cambridge. This was only my second trip out of my bedroom since surgery. Although I only managed half the visit in the museum and the other half lying down in the car, I’m amazed that I was able to do tbis and even though I’m exhausted today, I’m still finishing this blog!

As it’s only a month post op, I can’t say much has changed; although I haven’t passed out since, which was happening weekly beforehand. But, I feel like I’m turning the corner now and have every faith that symptoms will continue inproving quickly, as soon. I had such a positive response from last year’s surgery,  I feel positive that I will continue making baby steps towards achieve my goal to reduce my meds and increase time with my loved ones. So, I’m still in the slow lane, but I’m happy here for now whilst I carry out my job of healing, and continuing to rest!

Please check out my social media accounts and stores if you’re inspired:

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http://www.twitter.com/happyiihgirl

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Chronic Illness Bloggers