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.

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.

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.

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)

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!

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.

The Courage Needed and Compromises Made

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

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

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

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

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

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

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

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

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

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

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Spotlight on the fundamentals of the Infinite Dreams Collection!

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

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.

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. ♾

Click here for the Infinite Dreams Catalogue

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

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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.

Confessions of a Bed-bound Mum Surviving Without Energy

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

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

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

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.

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.

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?

5 Last Chance Opportunities To Show Unconditional Love

5 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.

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.

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.

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

There’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.

Free affirmations printable download

Taking a Chance on Me

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

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. 

   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 words! 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…

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?

5 Morning Affirmations To Guarantee A Successful Day!

5 Morning Affirmations To Guarantee A Successful Day

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

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

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

 

What are Affirmations?

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

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

Set Positive Intentions

 

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

 

 

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

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

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

How Affirmations Work

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

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

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

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

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

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

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

My Journey with affirmations

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

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

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

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

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

5 Morning Affirmations to Guarantee a Successful Day

5 Morning Affirmations to Guarantee a Successful Day

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

You can download these here: Morning Affirmations

I am full of gratitude and inspiration affirmation

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

Blank Affirmation design for personalised affirmations

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

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

Sign up today for your free printable Affirmations cards

References

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

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

 

My Not So Secret Poetry Diary – A Date with Anxiety #copingwithanxiety #poeminspiration #mentalhealthblogs #chronicblogger

My Date with Anxiety

It’s been a tough ten days in my chronic illness warrior body, so I wanted to share with you some of the things I’ve been feeling – eek, it’s time to get real peeps!

I’m going to reflect briefly on what’s been happening to my body and mind each day. But hey, remember this is me writing so, even though I’ll be totally honest, I’ll make sure there’s a positive to everything! This is the story of my Date with Anxiety.

I keep a diary (not a journal) and use it to pace my daily activities. Randomly through the year I write little notes of my strengths and personalised affirmations. Then in the evening I write 3 positives from that day.

Friday 7th December

I couldn’t sleep last night, it’s been disrupted all week, but this was next level. The pain was intense and relentless and I couldn’t understand why. A friend visited me yesterday, which had made my day. She never stays too long and spotted when I was flagging. I hadn’t napped either so I expected knock on effects, but why was it SO bad?

At 3:30am my heart started racing and I was breathless and dizzy – losing control. This panic attack came out of nowhere!. I got up to use the en-suite and collapsed, but my amazing husband Joel woke immediately and rushed to my side. Then he hugged me tight, that hug that let’s me know I’m not alone!

I ended up taking a strong dose of diazepam, but I still didn’t get much sleep and when my carer arrived at lunchtime I was stressed, overwhelmed and exhausted. She took such good care of me and was extra gentle, seeing me so poorly. I recognised at the end of the day that I’m a very lucky lady to have such wonderful souls looking after me!

Saturday 8th December

Hardly any sleep again last night! The meditation and breathing techniques I normally use didn’t help and the day was littered with panic attacks, feeling like I couldn’t breathe. I was on full anxiety alert. Thankfully Joel was amazing with me through it all again and encouraged me to go downstairs for a change of scene.

Before going down I had a shower which was an accomplishment in itself. I still had panic rush up on me again and I just wanted to run away! But Joel guided me through it all, holding my hand I calmed down. Eventually, drained and emotional, I managed a 10 minute nap watching TV, on Saturday evening and finally got some relief.

I’ve not had a flare like this in years!

Sunday 9th December

I’ve managed to sleep much better at last, but I feel battered and bruised from the state of alert my body’s been in the last few days. I know my brain has had the acute stress response or fight or flight. This is exhausting as despite having a large toolkit for dealing with stress, I’ve struggled to access these strategies whilst in a state!

I’m being kind to myself today and have prioritised getting downstairs to be around my boys, so that they can make me laugh and help me heal. The mental bruises take just as long, if not longer than physical to heal, but I’m slowly building myself back up.

This link explains what might happen during a panic attack.

Monday 10th December

I’m still feeling fragile today, but at last my body has decided to catch up on some of the lost sleep. I’ve cat-napped all day, with a little break at lunchtime when my carer arrived. I have no idea what we were talking about but we were cackling away! Joel was working downstairs (a little cushion for me – knowing he’s around even if he’s busy) and commented on the cackling as soon as he did pop upstairs!

Now that I’m trying to process my feelings, I was brave and decided to write a poem about the feelings I experienced. It’s important to reflect on any kind of anxiety attack however you do it, but sweeping it under the carpet won’t help you in the future!

Tuesday 11th December

I finished the poem this morning when I woke up early. Most of my poems are at least started when I’m either not getting to sleep or waking early. This was an early morning finish! I love creating the poem on a lovely background, using stock photography, which is perfect for sharing on social media. I loved the reaction this poem received!

I also chose to explain a little about what I’d been exploring when I wrote this poem. However, I’m not yet used to being so open about my own mental health whilst I’m still fragile. But I’m committed to raising awareness and always think about the fact that what I write might help just one person!

I talk about my anxiety levels rising as the lack of sleep and increased pain added up. But although I’m drained, I do have a strong mental health toolkit – full of strategies that I practice regularly. I know how to use these help build myself back up. Knowing that I’m my only priority in this instance is key to bouncing back!

Well, I thought that I’d got my groove back as the week went on but I’ve struggled again the last few nights, especially last night when I managed about 90 minutes all night. Thankfully I dozed all morning, catching up a bit on all that lost sleep from pain. However, I’ve managed to keep the anxiety in a box by using my toolkit. See below…

No mental health blog is complete without a few top tips.

If you or someone you know suffers a panic attack, try these tips!

• Exercise

Exercise is one of the quickest way to deal with the raised stress levels that come with a panic attack. My physical illness stops me from going for a run (think flight…), but I can do some bed yoga, even though I take it even more carefully than normal! Some good stretches and shoulder rolls are a great way to shake it off!

• Talking through the experience

A panic attack is our body’s way of telling us we’re in danger. It’s unlikely you’re in any danger, but tight chests and trouble breathing are all primal reactions to danger. This can trick the mind, almost like a tripwire. So rationalise and talk your physical feelings through with someone. The more you practice, the sooner you’ll interrupt the signals between the brain and the body and if you do this when you’re not in the acute stage, the quicker your training will kick in when you do feel anxious or panicky.

• Laugh, Smile and spend time with your loved ones!

What can make the stress disappear more than having fun with your friends and family. Make time for each other, put down your phones and other technology and talk. You’ll notice how often I talk about being with Joel and my boys. They make me laugh out loud every day and the feeling is mutual. It’s one of the strongest things we have as a team and we are definitely the reason for all of us usually coping so well!

• Relaxation and Mindfulness

I talk about meditation and mindfulness in most of my blogs because they are the easiest ways to relax. You can train your brain to take it slowly and/or meditate daily so it calms and controls your breathing. Then you automatically have these skills to help you relax during an anxiety attack. Body Scan Guided Meditations are ideal (search YouTube) and I are some of the easiest meditations to start with. You may find that something else relaxes you, such as taking time to be present or sitting in nature.

I hope that this sneak peek into my world has helped give you an insight into panic attacks and how they can come about. I have let you in to these thoughts because I believe that mental health is as debilitating as physical health can be. They are also often intertwined and life can be tough and lonely if you keep it all inside. I feel very strongly that sharing my experiences is vital to ending the stigma that surrounds mental health. I only discuss this to raise awareness, I’m not seeking sympathy!

If there’s one thing you have learnt from my Date with Anxiety or one thing that you can take away to help yourself or your loved ones, then please let me know in the comments. I’d love to hear from you.

**AND if you’re not affected directly, then please remember that you never know what someone is going through, so please take the time to listen and talk to each other!

I’ve referenced these websites and blogs whilst writing this post:

Anxiety and Panic Attacks- Mind.org

6 ways to switch off the fight or flight response

Understanding the stress response

How the flight or fight response works

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.

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!

• 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,

• 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.

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

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? 

Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.

So why the change of heart?

In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.

What is a support group? 

• A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
• Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
• A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
• A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
• A bridge between medical support and self-help

Why I joined online support groups

Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.

So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions.  I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.

Finding the right fit

I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.

When I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!

When it no longer does what it says on the tin

In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.

But I couldn’t get away from the drama.

Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.

As an empath, I’m susceptible to getting  too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.

Would you benefit from an online support group? 

I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)

Pros

1. Gaining self-worth or a sense of purpose
2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
3. Getting support in times of stress, depression or anxiety
4. Being anonymous allows you to vent or discuss feelings openly and honestly
5. Staying motivated to manage your physical illness or mental health
6. Gaining control of or feeling hopeful for the future
7. Raising awareness of invisible illnesses, disabilities or a specific disease
8. Getting practical feedback about treatment options, benefits or worker’s rights
9. Feeling empowered by supporting others or working successfully in a team
10. Accessible when it suits you, even in your PJs, leading to more participation

Cons

1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
2. Increased negativity due to constantly discussing aspects of your illness or disability
3. Interference on posts with unhelpful comments or incorrect information
4. Written communication means that inference or tone can be easily misjudged
5. Participation online may compound isolation from other friends or family
6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
7. Reinforcement of negative emotions and negative remarks to other participants
8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
9. Comparisons of whose condition or experience is worse
10. Possible use the environment to prey on vulnerable members

What is needed to create a good social support network? 

• Those running the group must be very clear about what support is available and when.
• Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
• Conflict needs to be handled professionally.
• A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.

Do online support groups work? 

The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.

In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.

When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.

Finding my own way

I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.

References

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

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!

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