Tag Archives: chronic pain warriors

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! 

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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. 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.

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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

5 Morning Affirmations To Guarantee A Successful Day!

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5 Morning Affirmations To Guarantee A Successful Day

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

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

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

 

What are Affirmations?

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

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

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Set Positive Intentions

 

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

 

 

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

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

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

How Affirmations Work

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

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

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

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

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

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

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

My Journey with affirmations

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

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

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

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

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

5 Morning Affirmations to Guarantee a Successful Day

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5 Morning Affirmations to Guarantee a Successful Day

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

You can download these here: Morning Affirmations

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I am full of gratitude and inspiration affirmation

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

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Blank Affirmation design for personalised affirmations

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

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

Sign up today for your free printable Affirmations cards

References

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

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

 

Chronic Illness Bloggers