vaccine – Page 2 – Letters From My Bed

Is hope safe?

I think it’s difficult to talk about how hard it is to have hope, when it is also the thing that keeps you moving forward. But, if you know me, you’ll know I’m going to give it a go!

As someone with chronic illnesses, hope gets me through the day. Whether that be hope for tomorrow to be gentler, or hope that one day I’ll be able to afford my own home and be able to live independently – which of course means I hope to find a way to generate an income.

I no longer hope to get better, I simply hope to not get worse. This change for me felt necessary, because hoping to get better meant bitter disappointment that would often send me into a spiral if I didn’t catch it in time.

It’s nearly been 5 years since my adverse reaction to the Pfizer vaccine, and I held so tightly onto my hope that at times I required therapy three times a week. I didn’t cancel my gym membership for nearly 7 months because I hoped this would be temporary.

Then I fought, I used the hope I was clinging so tightly to, to fight to get help and treatment and tests and referrals. And every single appointment left me with a fresh wave of anger, disappointment and grief. I developed medical PTSD, genuine trauma from these appointments because I was clinging onto that hope so tightly. That’s not to say the trauma was my doing, but it left me vulnerable to the dickheads I’ve met on this journey.

Next month I have an appointment with a FND specialist at Southmead and in therapy last week I spoke about how hard I find it to be hopeful. What do I feel instead? Trepidation, mostly.

While most around me are feeling hopeful that this is going to be the door that opens up avenues to progress, treatment and rehabilitation, I am almost rooted to the spot by my fear of disappointment. Even while the doctors tell me how hopeful they are, I find it difficult to contain my snort of derision.

I may not have seen this specialist before, this for me is an entirely new department, but the raw memories of what my hope has done to me mentally and physically are ever present as I draw nearer to the appointment. I hope I don’t get gaslighted or ridiculed, I hope I go in with an open mind and open heart, but I know I’m approaching this like I would a sleeping tiger. Gently, careful not to leave myself open to attack.

To prepare, and be armed with everything they could possibly require, I need to form a list of all my symptoms to date, including the ones that have eased. This means looking at my health as a whole, going back over the last 68 months to identify everything. I cope by refusing to look at my health as a whole. I take each day at a time, I assess what I feel like in the morning and go from there. I don’t go to bed worrying about how I’ll feel tomorrow, and I don’t wake up worrying about how I’ll feel tonight. In this moment, what have I got and what’s the best that I can do for me?

As a chronic illness patient, I’m a doctor’s worst nightmare – no, I have not been tracking my symptoms daily for over 2 years. Because then, while also not holding so tightly onto hope, my mental and emotional health are easier to manage. Each day I wake up with no change or a decline is a disappointment, so I’m not going to remind myself of what yesterday, last week or last year felt like. The same as every time I take a step I’m shocked that I don’t walk normally, I don’t need to add to this constant grief cycle.

When I had to do my PIP review, it required me to go through my original PIP application and see what had changed. I wrote about it at the time, but I can tell you it was a fucking lot. Everything had changed. I thought I could get away with “see before” across each section but those hopes were quickly dashed. That review was quite a traumatic experience for me and one I hope not to repeat as I prepare for this appointment.

Instead of hope, I identify myself as having ambition. A deep, burning ambition that I don’t know how to use. I know, with my whole soul, that I’m here for a purpose and I will spend this year trying to find an avenue that I can apply that ambition to.

Ambition feels safer somehow, because I don’t take ambition to appointments where it can be damaged. Hope gets damaged at every appointment. Yet still, every single day, I sit here dreaming of creating life of my own in a little bungalow. A home built around my needs, a little place where friends and family can visit and a sanctuary I can rest whenever I need to. I hope for this because I hope for a day I can built a life on my terms, working with my health rather than against it.

I’m already working towards it, not financially of course, but in trying to build a life on my terms. That’s where I apply my hope, the hope for a gentler tomorrow and a hope not to get worse. But I can no longer take hope to appointments with me, it’s too fragile after taking so many hits.

In case it wasn’t obvious, I haven’t been writing. Genuinely, not one journal since I last posted. I feel like I’ve been at capacity, not necessarily in an ‘I can’t cope’ way, but in a I need a break way.

I’ve taken a break from a few things recently and the outcome has been good for me. I found I was spending all my energy on appointments and fighting for help, but that’s left me with nothing to spend quality time with friends and family. The medical fatigue and PTSD means it’s just not as simple as booking and attending an appointment, it’s the impending doom and anticipation, it’s the upset to my system, my MH, sapping energy away from being able to have any meaningful experiences and joy with those I love.

So while I’m going through Urology, with the first appointment being at the start of July, and going through the withdrawals from pregabalin, anything else is being put aside. I’m taking a sabbatical from chasing and fighting and choosing to spend that precious energy on just enjoying life where I can.

As a result of the withdrawals I’ve also taken a step back from handling active safeguarding incidents. I’m still involved and liaising, but I’m mostly focusing on the admin side while working closely with the safeguarding lead trustee, whom it’s a pleasure to get to know better and learn so much from. It’s better for me mentally and right now a lot more manageable.

When I was 20 or 21, I finally saw a rheumatologist who told me I’d likely be in a wheelchair by the time I reached 40. I was young, struggling immensely with joint pain and the limitations it was causing me and this sentence lit a burning fire within me.

A wheelchair by my fourties?! I think the fuck not.

I’d gained some weight after starting a desk job with excess time for cakes and snacks but had recently got myself a dog, Bella. So between walks and hiking my weight had shifted a little, but it wasn’t enough to stabilise the joints in the rest of my body. But I’d made friends recently with a lady who introduced me to a private gym in bath – Relentless Training – and it wasn’t long before my love for lifting began.

It was hard work, and my body protested. At times it required the trainer to hold my hands on the lat pull down where my grip was failing or I’d use straps which felt silly for small weights but nevertheless they were necessary. Over the course of 12 weeks it all got easier, I’d dropped a significant amount of weight and gained a LOT of strength. But most importantly I was now off all pain medication for my joints and I could do the lat pull down without strapping myself in.

What followed was a beautiful journey where I explored various activities with incredible friends. We’d run every Sunday, a 6 mile circuit which to start with I could only run in 2-3 minute bursts and my knee would desperately try to dislocate. But we pushed on and I started being able to run for longer until I was able to run with my friends for the entire route. We did tough mudders together which were fantastic fun and we’d take our dogs to coffee shops and pubs in bath to eat well earned cake and delicious foods while we plotted our next adventure.

Soon came the time for me to move to a normal gym local to me, where I was introduced to the world of powerlifting. A world where I found my dream sport, where I excelled and learned so much more about myself and my body, pushing limits I didn’t know existed. All because my friend Cat introduced me to Emma, who introduced me to weight lifting at this gym in bath with the Steve’s. A gym where we’d push our limits while laughing, swearing and dancing in between sets. The shout of “HUSTLE” still echoes in my mind.

I thought that was me set. I thought I’d cracked the code on how to look after my body and keep my joint stabilised. I didn’t know this would happen, that a simple vaccine to protect my loved ones would fast forward me to that rheumatologists prediction.

But ever the overachiever, I got a wheelchair at 31, not 40.

Now I have new dreams and aspirations. I know I’m still very limited and likely to be that way for some time, but I’ve been thinking about getting more independence. I’m still limited to the point of not being able to consider working, unless there’s an entrepreneur with a canny business idea that can be run from home with no energy. The reality is that I can’t wash daily, or even every other day. I’m always behind on my laundry because of fatigue, I don’t get to cook for myself daily and I can’t do much in the way of cleaning regularly. I do spend the majority of days out of bed, but I have to stay resting in bed until 11am. My life is very small and very slow, ruled by routines. I exercise Riley daily, I read, I do the safeguarding admin and most days I still have to sit doing nothing.

But I’ve been looking into the idea of social housing to gain some independence and feel like an adult again. I don’t know how it works and need to look into it properly, while looking into how I actually manage in my own knowing that I rely on mum for all the shopping and the bulk of cooking and cleaning. But I feel for sure there must be some way I can make it work. Me, my chair and my dog.

It’s strange the way your dreams change. Before when living with Hannah and our dogs, my dreams were to continue finding myself, to be happy and to keep gaining more wins and titles in powerlifting – maybe even some records too. Now I dream of being able to look after myself, to be self-reliant and to cook my own dinners.

The first step I’ve taken towards gaining independence is selling my beloved A5. It was my dream car and I absolutely adored owning and driving it. But things change as we know. Driving a manual has gotten harder for me, so even short drives around town are exhausting. If you think how quickly my legs become uncontrollable when walking, and then trying to use those same legs to repeatedly change gears etc. It’s not been easy and I’ve been ignoring it.

I kept my car for various reasons, aside from the fact that I lost everything else to the vaccine, so why the hell should I lose my car too. But it was my only access to independence, even though for the first few years I’d regularly be unable to drive. But I also saw my car as my rainy day fund, the only asset I had left that I could use when I was well enough to start building a normal life again.

Now though, that car is a hindrance. I couldn’t travel independently with my chair, so while I got the chair, I still couldn’t do a food shop on my own or take Riley somewhere different for a walk. I loathed longer drives, all the trips I have to make to Southmead were a drag.

So I sold it and 3 days later I ordered a car on the motability scheme. I’ve chosen the Škoda Enyaq estate, which is being fitted with a boot hoist next week so I can travel with my chair on my own, and I get to collect it on the 22nd.

This period of being stuck at home without a car hasn’t been easy. I’ve been really struggling with my health the last few weeks, but despite that the feeling of claustrophobia and isolation is real. It’s a lot like the first 3.5 years of this where I could barely get out and see friends or family, couldn’t even pop up to the shop to get out of 5 minutes. But at the same time, my health has demanded the down time, and despite all this time at home I’m still behind on laundry, washing myself, cleaning and I’ve done little cooking. I’m just not well enough for it right now.

So that’s me. This is a long one and that’s probably because I haven’t been writing. Again it’s something I’ve not had the energy for, my head and body have been at capacity and so trying to write hasn’t felt possible. I’ll try and write more, but it’s not a promise as I have to listen to my body. If there’s one thing I’ve learned it’s that I have to pay attention to the cues I’m given and set boundaries so I can honour my bodies needs.

I’ll end with a little note on what’s really kept me going these few years. When I was competing and training I had a lovely coach, Mark. A softly spoken, gentle giant with a big heart. He once said to me “I’ll never programme something you can’t do.” Now, all these years later I still apply that to my life and all situations, I trust that the universe won’t give me more than I can handle.

Love to all 🤍

An afternoon with Bella.

Today I found it in my heart to finally try and make progress on my last paint by numbers of Bella. This was custom ordered from a photo I took during a winter sunset on Bella’s first ever beach trip, over 11 years ago.

I started doing these about 8 months after the V when I needed creativity and exercises for my hands when I lost fine motor skills. This was by far the hardest one I ordered, with so many tiny sections and 48 different colours. My tremors became too bad to continue and I haven’t touched it for at least a year. Then I found I couldn’t face it after losing Bella, even though my tremors have reduced.

Today I found I really struggled to hold the paint brush without pain and a weak grip, which made control very hard. The same way I can hold my cutlery but I struggle to cut tough or crispy food. Instead of admitting defeat I grabbed a bigger brush with a wider grip to hold and focused on the large black area across the bottom. Then I sat back and cried, with both grief and pride.

V injury is messy and I can sometimes forget to cheer for myself over the little wins. Today I’m proud of myself and that I found a way around my limitations to spend a bit of time with Bella again.

Wagons aren’t rolling.

I’ve hit a wee problem with my wheelchair. The car I use cannot have a boot hoist fitted due to the long sloping boot lid.

So I’m not sure what to do. My PIP review has been extended as they’re so backed up, it was due February 11th and has been extended for a year. As we’re past that date I can’t get a car lease via the Motability scheme with a boot hoist, and if I could it would mean losing £301 a month roughly for the lease payments. I don’t know that I can afford that, and going through financial stuff is my biggest source of stress and anxiety after years of being in debt.

I don’t know if a ramp would work, the chair weighs 37.4kg. If it works it would still mean some manual handling to shift the chair to sit horizontally in the boot which I don’t think I can do. The car isn’t worth a whole lot but it’s mechanically sound, I don’t like the idea of selling it for peanuts knowing I couldn’t get a car in as good condition mechanically for the money I’d get from selling. That would also leave me trying to find up to £3000 for a boot hoist to be fitted to said new vehicle, and whatever work would be needed to make sure it was in a safe condition.

Motability seems like the sensible way to go, but it could be over a year before my PIP review is complete. This leaves me a little up shit creek until then, and only if I found I could afford to lose the mobility component of my PIP. I’d still have to sell my car to cover the cost of the required advanced payment.

Honestly, when I see people rant on social media about how easy people on benefits have it I don’t think they really understand the issues we face daily. I couldn’t get help to improve or prevent my physical disabilities, my doctor thought a chair was a great idea but didn’t tell me about the wheelchair assessment scheme which could have helped with funding. I’ve had to fundraise so much, and now I have a loan repayment plan in place with my mum to cover part of the cost of the chair. I swore I’d never enter into debt again, but the torture of being unable to do anything was the deciding factor.

It’s never quite as simple as it may seem. The support should be there, the treatment options and testing should be there, but they aren’t. There is a whole community of us who are just left to muddle on as best we can, hence some like me have turned to fundraising to try and improve their health or living situations. But that conversation is for another blog at another time.

If anyone has any bright ideas of the best route forward from here I’d welcome the suggestions!

What in the watermelon is going on?!

I think I’m starting to really learn the power of food. As you know, my fatigue issues are improved by eating a low histamine diet. But a fellow injured lady, turned friend, has spoken many times about the power of watermelon on energy levels.

I’m on day 4 of eating watermelon for breakfast and lunch, and if not lunch then a few small snacks before dinner. Yesterday, between 11 and 1, I played with Riley both inside and out (with me stationary), walked him for 20 minutes, bathed him and then bathed myself. Dad came round for coffee, and then I relaxed with a puzzle and checked in for a zoom social with UKCVFamily members.

Today, by 2pm, I’ve folded my laundry, cleared out my wardrobe, properly, so I was able to put it all away, stripped and washed my bedding which is now on the airer drying. I then hoovered my room and the upstairs hallway and out the last few bits away. I now have a clean and clear bedroom where it can be a peaceful space once more. Unfortunately, as a result of the increased activity, I now need to have another bath and pop another load of laundry on due to a larger accident than usual. These things happen.

This evening I will have to make my bed again, so I’ve just loaded up on some more watermelon in preparation.

I’m sure some may wonder how I’ve managed this given the physical limitations, but the tidying and organising my wardrobe was done entirely while sat down. The only physical part was the hoovering, bathing and taking laundry down. And obviously later it’ll be making my bed and I think I will likely need to ask mum for some support with that. Though if I know me, I’ll likely try and do it myself in stages as I’m very particular about how my bed is made.

This may all my psychosomatic, it may come with a heavy price in a day or two, or maybe even in an hour or two. I just don’t know. But right now, as I sit in my clean room waiting for my bath to run, I can’t help but feel a little hope and I’m very pleased with myself. I have to admit that I felt good, and that’s both joyous and terrifying. I don’t recall a time in the last 4 years where I could have done this much within 2 days. Maybe the call from this friend with advice may have also given me a boost.

It gives me hope. While my physical limitations remain, and I’m very close to being able to order the chair, these energy levels could be life changing should they stay as they are. If I can build up to being able to cover ALL my basic care needs myself, it could then lead to me being able to consider what sort of work I may be able to do.

I don’t want to get ahead of myself, it would still be a long and challenging road ahead. I also know that I felt this good after my surgery initially and 2 weeks later it all came crashing down. But if I can feel this way for two days there’s no reason why I can’t find the solution to maintaining it for longer. I just hope that it doesn’t take me another 14 months to find this energy again if it does disappear.

The downside is I’ve had an increase in night sweats and waking through the night, which leaves me very groggy in the mornings. I still have to give myself until 11am before I consider doing anything other than lying down. I’ve also being unbearable itchy from my hip up for days now, and it’s particularly bad at night. I’ve not found the cause, but my skin is very fragile so my stomach and chest are now covered in petechiae despite my best efforts not to scratch. However, this is a positive journal entry, and I will hold onto this hope very carefully.

Forgetting to live.

I wonder, often, what I ever did to deserve the people I have around me. The ones who cheer me on, give me the lessons I need, and the tough love!

Last night a lovely friend called me to give me a lesson of sorts. The short is that I should be so afraid of what may come that I forget to live.

And that got me thinking – what life do I want? I’ve said before I’d be ok if this is my best, but what would I do with it? I love writing, but I don’t have an inspiring mind. I write what I feel, I write what’s real to me and sometimes words of encouragement for others when they need them. I hoped, should I get more mobility, that I’d become a dog trainer. The reality is that I’ve never had the mind to understand how to monetise the things I’m good at.

I don’t know what I want my ‘career’ to be. I use the change in term deliberately, because what I do is very different to what I want my life to look like. The answer to that I already know.

I want my life to continue being full of love. I want to laugh often, I want to see more of the world and I want to experience the little moments that become the big memories with those I love and who love me. I want to continue helping people. In truth, I hope that I can continue volunteering as I do with UKCVFamily for as long as I am able, I couldn’t imagine ever not doing that. It’s the first ‘job’ I ever felt such dedication and drive for, a job that isn’t a job, it’s not work; it’s a privilege. It’s an honour to help those who saved me, and it’s a cause I feel extremely passionate about. I meant what I said, I always want to be a part of the solution and I will always have deep love for the members and volunteers.

I’ve digressed…

I want to make memories I’m proud of, but mostly I just want to know that at its core, my life is a happy one.

I’ve only lived a short life so far. 31 years isn’t a lot and I have a hell of a way to go. And the point my friend made was right, I am FAR too young to be so worried about what may become of my health that I forget to enjoy the life I already have. I’m sure there will be some deep thinking on the horizon while I try and work out what I can and want to do, and a thought for all the things I want to try.

I said in my previous blog that I see others doing things I fear I will never get to do, but perhaps I can and it just looks a little different. Perhaps there are amazing opportunities and bucket list adventures available to me, I just need to stop thinking I can only do them if I’m able bodied again. So what if I fail, I’ll bet I’d still enjoy trying.

What the Covid-19 Inquiry meant to me.

I haven’t discussed the Inquiry much on here. It was a huge focus during January but I don’t often discuss things like this. I don’t mean vaccine injuries, it’s the political shit that I don’t discuss. It’s not good for my mental wellbeing to be involved with it. But I am involved in it, because I AM vaccine injured.

My thoughts on it are simple; could it have been better? Yes. Do I think opportunities to help the injured and bereaved can come from it? Yes, providing that the right recommendations are made and that more people are honest about our existence. We learned that everyone knew the vaccine injured and bereaved would exist, but that nothing was done to help us or prepare for us. Still nothing has been done.

But what really mattered for me during the Inquiry was the impact it was having on members of UKCVFamily. As safeguarding lead, and as an empathetic human, it was hard to witness so many struggling with the things some witnesses said, and yet they couldn’t switch it off. I get that. For weeks we were listening to a dissection of all the decisions that led to our injuries, or worse. Of course we want to know as much as we can. For me I couldn’t, I couldn’t watch it because I know absorbing heavy content is detrimental for me. But for many that did watch it, and even those who didn’t, it was and is traumatic.

The hardest thing with safeguarding is there only being so much we can do. I’m honoured to have been trusted to be a listening ear for so many, and honoured to be trusted to have this role in the first place. But we can only do so much. Hestia is an independent service offering support throughout the Inquiry. As core participants, that meant this service is available to our members and I’m so grateful for that, it’s been beneficial for many. I also learned a lot from the Trustees who helped with the safeguarding during this time, lessons that I can take on board and apply to future safeguarding concerns.

The safeguarding aside I took on some extra work to support the Trustees. Again, it’s a privilege to have been able to do so. They worked their arses off for 18 months, and those 3 weeks of the Inquiry were even more intense for them. So I got to help with some social media content alongside the extra safeguarding, which really was a drop in the ocean compared to their workload. But anything I could do to help I was eager to try!

The extra work was hard, I’m not going to pretend it wasn’t because I’m still recovering. However, I did it and survived. Even when I took on Riley just 3 days before Module 4 started. I did it all, and I’m so proud of myself because just 6 months ago I wouldn’t have lasted a day, let alone 3 weeks! I was trusted to help, which is something I’m equally proud of.

I’ve always had imposter syndrome, it stemmed from many years of fearing myself which I’ve discussed before. I know I am a decent human being, my instinct is always to help and have compassion, but imposter syndrome plays a role in trying to discredit me. So when others trust me to help, when they trust me to support them or do some extra work it’s truly the greatest feeling. To know that others see me as a good person is a middle finger up at that little voice.

So my thoughts on the Inquiry really have fuck all to do with the Inquiry. I got to do more to help a community that I love so deeply, to support a charity that will ALWAYS be a big part of me, and to work among a team of the most inspiring people you could meet. I’m proud of myself, because I really didn’t want to be here for a long time and yet for the first time in my life I’m experiencing the feeling of belonging; of being exactly where I am supposed to be. Learning and being supported by some fucking courageous humans as we all try and muddle through as best we can.

So, fuck the Inquiry (though it was a very important step in our journey), I’m just looking forward to seeing what UKCVFamily can achieve next. I’m looking forward to seeing members get the help they deserve, I’m looking forward to being a part of the solution and I’m looking forward to the lessons I can learn throughout this journey.

Winning doesn’t look like it used to.

The people I have around me, friends and family, are what hold me together most of the time. The people who want me around just because I’m me, who show joy when they see me simply because I exist and I am there. Not because of what I can do, and they certainly don’t let me see what I can’t do. That’s love.

They make plans that they know I can manage, they’ll never suggest doing something that will cause me pain, discomfort or future consequences with my health. They never make me feel less than and they’ve accepted every version of Chloe that I’ve been – both able bodied and disabled. They cheer me on when I manage to do the small things, and they cheer even louder when I can’t.

Yesterday, as you read, was a low day. So I took a lesson from my circle, and I ensured the only things I did were things I am capable of. Mum walked Riley, I hoovered the living room and sat with a puzzle. I should have bathed, but like I said that’s torture and I couldn’t add anymore torture to my day. I also have laundry to do, but I have the week to do that – even if that means multiple small, manageable, loads.

I don’t often not use the energy I wake with for achieving things or ticking something off my always-too-long to do list. If I wake with a good body battery that’s normally the day I’ll collect my medication, walk Riley, do my laundry, collect dog treats or nip to a shop to buy whatever essential item is on my list. There’s always something on that list, I’m nearly 4 years in and I’m still working out what might make my day-to-day easier and buying it. And as my condition is always changing, my need for aids grows. But despite not doing these things I still depleted my battery before bed time.

Of course I don’t do all those things in one day, that’s basically my list of monthly tasks, that I don’t always manage to get done. For instance I don’t think I’ve managed to collect my own medication since November, and often I’ll put a laundry load in first thing and by the time it’s done I’ll have to have mum help put it on the airer.

But what can I do everyday without fail? I wake up, without alarms, around 6-7.30am. I let Riley out and give him his breakfast, and then I’ll have mine. A solid 6/7 days I’ll remember to take my medication on time too, which is before 8.30am, or I’ve already fucked the day. I manage to maintain hydration by drinking at least 2l of water a day. I’ll give Riley lunch and he’ll have random training sessions throughout the day, often ones that ensure I can be sat down. I manage my incontinence and the tasks that come with that. I take my evening medication and supplements as soon as I finish dinner without fail. Riley has dinner and I ensure he has ample toilet breaks and playtime throughout the day; sometimes we play tug of war, other times it’s got to be low energy for me so we play fetch. I ensure I eat with all medication and supplements, so breakfast and dinner – though at least 4-5 nights a week mum cooks. Some weeks it’s more, some it’s less, it all depends on my abilities on any given day. Sometimes I have easy lunches like watermelon or a bit of philly on ritz, or cucumber and carrot sticks, other times it’s instant noodles – it’s got to be low energy and something that doesn’t require me being stood for any length of time. Sometimes I can’t manage to do anything for lunch.

Let’s not forget the wins I have by being able to use my own suffering to help support others like me. To help support a charity and support group full of people battling the same issues as I am.

It may not seem like a lot, but believe me when I say that existing and managing my bodies basic needs can sometimes be a real challenge. And there are improvements, for instance this time last year my fatigue was at such a level that I often couldn’t keep myself hydrated because I physically couldn’t get a drink. Or I’d lie in bed, really hungry, and there would be nothing I could do about it. Even now I ensure there is always some form of snack and a bottle of water in my room for emergencies. Imagine having to keep emergency rations by your bed as standard.

I still manage my water intake to time needing the toilet, particularly in the evenings when I am downstairs so I don’t have to go upstairs again until bedtime. This is both energy saving and managing my physical limitations. My legs often stop responding and I walk like the tin man when they become uncoordinated, or they shake, and each step is like trying to lift a breeze block that’s been strapped to your foot. So I have to manage how much I do physically as well, as doing the stairs too many times in a day brings this on as easily as a 20 minute walk.

So I have limits, but honestly being able to keep myself hydrated and remembering medication daily are big wins for me now. Remembering anything is a win.

My injury to the vaccine wasn’t just the physical symptoms, or the pain and exacerbation of existing conditions, it was the swift cognitive decline. Within weeks I couldn’t understand the work I used to do, I still don’t. I couldn’t remember the simple click of a mouse that would do the basic command I needed. My memory is terrible, if it’s not written it didn’t happen and the information no longer exists. I have to do daily brain training exercises, which help, but lately I’m aware of my memory being worse. I also struggle with verbal information processing, if you’re giving me lots of information it best be on paper!

I lost fine motor skills too – I spent months doing handwriting sheets because my wonderful handwriting suddenly turned into the writing of a 5 year old at best. I still have to work to maintain what I have, I use chime balls and daily I eat something with chopsticks. That’s not including the two rounds of physio exercises I do daily, head to toe, which I believe is likely why I’ve managed to maintain some strength. That’s also a win, to maintain my daily physio routine, because the NHS wouldn’t even give me that.

There is so much people don’t see. Someone I vaguely know may see me in TK Maxx with my walking stick and think aside from using a stick I’m fine. But that’s one of my errands, to pick up my body wash which is the only one I’ve found I don’t react to, and it may well be the first time I’ve managed to get out the house in weeks. It may also be the reason I don’t get out the house for another few weeks. Or that by doing that errand I might not even be able to bath for days and my mum might have to help me out my chair and up to bed that night. Or I might get excited by being out and push myself too far to see more than one section of the shop, buy multiple items and then have to have help with it out the car. Sometimes I’ve found myself requiring assistance out the shop with a bottle of milk and 2 types of vegetables. And some days I can make it into one stop for a bag of roysters and not use my stick – these are my favourite days, even when I’m wobbly and feeling unsafe.

But what I try to show people is a normal functioning human being. I may be seen at someone’s birthday appearing completely normal, but I’ll be on extra meds, likely feeling a little high, and covered head to toes in pain relieving gel. All so I can play the role of healthy human for a few hours and then suffer for weeks as payment. I hate being ‘seen’ now. But being able to go at all is a huge achievement.

The point I’m trying to make is that yesterday I was really trapped in my limitations, but I do have wins. Everyday I have a win, it’s just they don’t look like they used to, they’re a lot harder to achieve, and they don’t come with medals or titles. And few people get to see these wins. They look like just making it to the end of the day in as good a shape as I can manage, and that’s ok. I can accept that most of the time, but there will always be days when I cope a little less.

I’m a work in progress.

Sometimes I hit a wall. The one I’m at right now is solid.

I’m slowly starting to feel better, today my pain is slightly reduced, but I can feel it sitting there ready to kick in. My body battery is better, but I’m afraid to use it. Using it will certainly bring the pain in quicker.

Mentally I am overwhelmed, I can’t take any more in. I’ve told my mum I need a zero conversation day and absolutely no questions. I can’t make decisions, even the small ones. I’m bored, I feel like I need to do something, yet at the same time I haven’t got the capacity to do anything.

I have days like this often, particularly if I’ve done too much. It’s a standard part of the recovery period, but one I struggle to sit comfortably with.

My body isn’t hungry, though it’s craving something.

I never know how to manage days like this, you’d think I’d be an expert by now but chronic illness doesn’t work like that. Many think you should be ‘used’ to it, but you never get used to it, not really. You can accept it, but it’s uncomfortable to be in.

I miss my old life, my old body that allowed me to live and be free. I had limitations then, I was still riddle with chronic illnesses, but we had mutual respect and understanding. We could work together much more easily than we do now.

But I can’t let myself get lost in those thoughts either. I am not her now. I’m proud of where I am but I’m truly desperate for some freedom and independence. That’s what’s really lacking. I feel locked in and I just want to scream “FUCK OFF” at everything.

I dream of living in my own place with Riley, though I still wish it were Bella. But that’s life, and Riley is shaping into a good companion. I so wish I could care for myself fully, I wish I could do long walks and work again. I wish the simple act of having a bath wasn’t a form of torture for my body. I wish doing my laundry wasn’t worse than the tough mudders I used to do for fun.

I know where I am, I’ve been here many times. When my body fully crashes, mentally and physically, I find myself in a darker place where I can’t help but dream about the things I used to do while watching people do the things I fear I’ll never get to do.

I guess, deep down, I just wish things were easier. Not life, life always has its trials and tribulations, but it also has joy and fun and laughter and LOVE. That’s as true now as it was before the vaccine. But I wish the everyday mundane things that I never had to think or plan to do were easier. I watch mum doing chores and I hate how she can do in one day what I can’t in a month.

I need a holiday, some space alone and some freedom. Though I know my issues will come with me. I wish the simple act of going out for coffee wasn’t so daunting.

I’m rambling, but I have to get these thoughts out of my head to ensure they don’t fester. The reality is that I am restricted, and I am proud of each small task I manage to achieve. This crash is the result of taking on a significant workload during the 3 weeks of the inquiry. I proud I got to do any of it, even more grateful that I was trusted to help.

I’m going to keep pushing to raise money for the powered chair. I’m also going to push the doctor to refer me to the wheelchair service for assessment.

I’m scared by the fact that if they find and fix the cause of my disability it likely won’t undo the damage already done (I don’t know if I told you this, from my consultation a few weeks ago). I hate the lack of support with where I am now, and I hate that I just don’t have the energy to fight anymore. Appointments are traumatic every time and I just wonder sometimes why I keep trying. But I know that I have to, I have to know I’ve done all I can to not get any worse and to get the support I deserve. But sometimes the medical PTSD wins, and I’ve been delaying seeing my GP for weeks as a result.

So I’m going to do the only thing that seems achievable today; I’m going to eat my watermelon, take my medication and supplements and sit with a jigsaw puzzle. Sometimes the healthiest thing to do is something I can zone out into until this darkness passes. There’s no point trying to do things I know I can’t do, only to prolong the flare and inevitably fail. I have to do something I can ‘win’ and that doesn’t use precious spoons or require decision making. I’m going to ask mum to walk Riley, she already offered but I insisted it was a training day and that I’d be taking him out shortly – I won’t. I can’t. I know that now I’ve finally got through these thoughts.

I am going to share this. I haven’t shared a lot recently which I should have, especially as a lot of it has been more positive with the inquiry and the tasks I achieved. But I also have to be real, because this is a rollercoaster and I can’t expect people to understand if I don’t tell them everything. That’s something I’m not very good at, I try too hard to be ‘normal’, to stand chatting like my body isn’t screaming at me to sit down or like my mind isn’t telling me to be honest with people about what I’m really feeling that day.

I’m still a work in progress, I think we all are and always will be. But I’m trying.

I’m going to put the link to my fundraiser below. If any reader would be so kind as to share it I really would be grateful. I’m desperate to be free again and this is the only way I can achieve that right now.

https://www.justgiving.com/crowdfunding/cp-212?utm_term=x3N32Ej2R

To Charlet and her army.

A little under 2 years ago, quite by chance, I came across an online support group called UKCVFamily. That summer I joined 3 of their, now, trustees and 2 other members in Parliament.

This was the first time I’d ever met other injured people in person and I was welcomed with open arms, smiles and hugs. Little did I know then that these people would become dear friends of mine.

In fact, I had no idea quite what was going to be achieved over the next few years. Had I been asked, I certainly wouldn’t have been able to list all the things that have been achieved.

But yesterday, something monumental was achieved in front of the nation and the world. Charlet Crichton took to the stand at the UK Covid-19 Inquiry to face questions on the mammoth witness statements she and 5 others formulated for the Inquiry.

Over 400 pages of evidence, testimony and overall bad-assery, was produced over the last 18 months. This alone has been a full time job for Charlet, who did this without question or complaint while juggling her own health issues as a result of the vaccines. How she’ll be able to escape an MBE after yesterday, I don’t know!

When she sat there yesterday, oozing professionalism and composure, she articulately put across the concerns of the members when questioned. She batted down notions that none of us really know whether the vaccines made us sick – this one actually made my own bloody boil, but Charlet corrected this with such calm and composure. The last few months have been especially hard for our trusty leader, but she’s never once let up on the gas.

Yesterday was the culmination of all that hard work and it was an honour to watch her and be able to say, “I know that woman, she’s actually a great friend and inspiration of mine.”

I’m in awe of what this woman has created and achieved. I wasn’t there when she founded UKCVFamily, something that was created because while Charlet was suffering in the early days of her injury she saw a need among others to have a safe space. Putting aside her own suffering, during which she was helping with global support groups for vaccine injured, she created a UK safe haven.

Of course there are others who joined her in these journeys, not least the other Trustees – Caroline, Brian, Claire and Sarah. The ones who have held each other up and kept each other going throughout all this work for the Inquiry, alongside all the other work that has happen to make UKCVFamily a charity, to gain huge support from MPs, to speak to the press, to support the other volunteers who help run the online support groups, to arrange regular meetings online with health practitioners for the members and produce advertisements to help let other injured and bereaved find us. Of course, I can’t not mention the other volunteers, like myself, who each play their own role in keeping the groups runnings, keeping morale up and keeping our members safe.

That’s just a VERY short list of some of the things the team has achieved for this community. What they’ve done since the start of Module 4 I couldn’t even attempt to list.

I’m in an incredibly fortunate position, in that I am surrounded by inspiring people. I’m in a doubly lucky position to be able to say I’m glad I was vaccine injured. You won’t hear many say that because none of us can ever be happy that this happened to us. But, had it not happened to me I wouldn’t have met Charlet. I wouldn’t have met the other trustees and found deep friendships among the other volunteers. I spent a long time not feeling like I belonged and not feeling like I was where I was supposed to be, and then I joined this incredible team and community who each day make me a better person, who inspire me to do the absolute best I can for this community and who hold me up when I am struggling.

But mostly, I will forever be grateful to say “I know those people, they’re great friends of mine and they inspire me.”

Please take a short moment out of your day to watch Charlet and her mic-drop moments from yesterday, even if you’re not injured. In fact, especially if you’re not injured.