February 2025 – Letters From My Bed

Believing in your worth.

Throughout most of my life I have often been guilty of not believing in myself and my worth. Understandable, that leads to having quite a closed mind with little imagination. If I don’t believe in myself then how on earth can I imagine the things I’m capable of achieving?

There are things I know I’m good at. I know I’m good at helping others, sometimes to a fault or beyond the limits of my health. I’m getting better at managing those boundaries with myself, it’s not been an easy battle to quit the people pleasing mode when it’s been my default for my whole life. I’m good at listening, I’m good at compassion and kindness.

In recent years, I’ve learned that I’m quite good with writing too. I’m certain my English teachers would agree, it was never my strong point growing up. Once I found what I needed to write for, it became very easy. I’m sitting in my pyjamas, throwing a ball for Riley, all the while writing this without much thought input. Like I said, when I’ve got something to write and it’s important to me to do so it really is quite effortless most of the time.

I’m good with animals and animals are good with me. We share our gentle souls that make connecting so beautiful.

But here’s my stumbling block and I know people will read this and this “are we really having this conversation again?” See I want to continue helping people, I feel certain that I can. But what I lack is the imagination and the blind belief that what I write has meaning to others. Yet, I continue to write and while I do take the odd break, I’m always back because I know somewhere along the line it might just help someone.

This belief block is a hurdle for me because I have this fear of sharing my blogs. I know that blogging in general doesn’t get the traction it used to before the days of TikTok and Instagram reels. Where is the market for someone who is good with words but has absolutely no interest in making videos of their life and spending hours editing them? Kudos to those that do this by the way, genuinely I am in awe of your bravery and the ability to just do it. I however, do not have the mind of an entrepreneur, I just sit wishing I did instead.

I’m a tech luddite. I don’t even write on word or use my laptop. I open the notes app on my iPhone, tap away for 10-20 minutes and shove it on the blog. Job done. Nice, easy and low energy.

So where do I build the belief in myself that will help me take this little corner of the internet further? No one wants to read an essay posted alongside a random image on instagram. I love the people that do read my content, friends, family and strangers. Sometimes I’m blown away when I see 20 people have read a post. 20 people who have spent a little bit of their time reading what’s happening in my life that day or some experience that I’ve cared to share.

I guess, as I’m experiencing more days with better energy I’m trying desperately to think how I want to spend that and how I want to earn a living going forward. I know I’m a little way off being able to get a job, but I like planning and I don’t like unknown certainties. I have to look forward and think what I want my life to look like, and ultimately I know I don’t want to spend the majority of it stuck in an office doing work that doesn’t enrich my life and my soul. I want a life of meaning, I want to feel accomplished and I also have to plan a life that does allow for my limitations and unexpected flares without having the stress of explaining to a boss why I can’t come in and no I don’t know when I’ll feel better either.

Which leaves me wondering how I can lean on my strengths to make a living. Or perhaps what I could do that covers the bills and still ensures I can spend the majority of my time doing what I love – helping others. The reality is that right now I am doing what I love. I love my life, I love the slow pace, the low stress and the ability to give my health the rest and peace that it requires. But one day, there will come a point where finding the way to earn a living with my new body and new health is a necessity.

I thought about crocheting Moses baskets and selling them, even making them to order, but I don’t think my body would cope with that too well. I then thought about operating a service where people can donate their wedding dresses for others to hire, because everyone deserves to feel beautiful on their big day regardless of their budget, but then you’re relying on that actually being a desirable service that others need and the income isn’t guaranteed. Mum suggested I send some of my writing to papers or bigger blogs and online magazines. Then I thought perhaps I start writing about things that people do want to read, or even writing pieces that people have commissioned (if that’s even a thing). Perhaps I become a disability advocate, sharing not just my own stories but other people’s too.

The bottom line is I don’t know what to do and ultimately whatever I do will only ever be successful if I truly believe I can make it that way. That’s for me to work on and perhaps when the right idea comes along I won’t have the doubts that people will invest in what I can offer because I’ll just know that it’s right.

A day of beautiful people and the reality of public transport as a wheelchair user.

I’m now home, in my pyjamas, covered in potions and lotions and hot water bottles. I travelled to London to meet some members and volunteers from UKCVFamily and I got to experience just what it’s like to travel as a wheelchair user. I had both great experiences and humiliating experiences.

But first I’m going to skip to the middle of the day, where I got to meet 7 other wonderful people who share my experience of the last 4 years. I exited Stratford station and immediately felt overcome with emotion, so I took myself aside to take a moment. I knew I’d be emotional, I always am when I meet fellow injured folk, but I felt I needed a moment to be proud of the fact I’d made it and to be able to enter Starbucks without tears streaming before they even said hello.

Lorraine came and met me at the door and I finally got to embrace the woman who has personally given me so much support and love over the years. We went in and I got to see everyone’s beautiful smiling faces and give Brian a much needed and deserved hug before I marvelled at his beard. There are too many amazing things I could say about this man, The Beard, but everyone deserves a friend as loving and supportive as he is. Kay, Dominic, Ange and Jac were quick to say hello and I felt so welcome and at home among everyone. Claire joined us shortly after and once welcome hugs, tears and introductions were done we made our way up to M&S Cafe where it was significantly calmer and quieter than Starbucks.

In a way, none of these people were strangers to me. We not only share our reactions to the vaccine, but we’ve spent years sharing our highs and lows with each other, holding each other up when needed and cheering each other on for all the wins too. Today was no different as we got to share our stories in greater detail, laugh like we’d been friends for decades and even sniff and share a nifty tub of CBD cream. There was no embarrassment or judgement when we shared the hardest parts of our situations, just deep understanding and compassion. Most got sandwiches and drinks, while Kay and I opted for full cooked dinners and the time just seemed to disappear. In fact I was very disappointed to have to leave, I could have stayed there for hours more and probably wouldn’t have noticed how much time had passed.

With a promise to arrange a Wiltshire meet up with Kay, I said my farewells and wheeled myself off to tackle the journey home. At this point I really was on cloud 9. I was so fucking proud of myself and what I’d achieved, not just in making it to London, but in doing this huge journey alone as my first outing with my chair. To finally meet the people who have saved me time and time again and who I truly love and cherish so much.

But wait…where the fuck is my purse?!

Yes, dumb dumb here couldn’t find her purse anywhere once she got to the station. I looked everywhere and ended up calling Lorraine to see if it was on the table, and as she answered I suddenly found it in another pocket. I’d bought a new jacket for the occasion and had already forgotten it had four pockets rather than two. Panic over, until I missed my tube.

I got through the station gates and down the lift to the subway proper, which is about where all fell to shit. I don’t ever use public transport, and can count on one hand how many times I’ve ever used the tubes, and only ever with someone else who knows how they work. I knew I needed the Elizabeth line, but I didn’t know which platform of the two I needed. I’d got into the tunnel, hoping to ask a member of staff to direct me, but what I was faced with was hundreds of people barreling towards me in all directions and I got stuck. I said excuse me, I repeatedly said excuse me but not one person acknowledged my existence. I couldn’t turn back, I couldn’t go forward, and I’m not ashamed to admit I started to panic. I very carefully turned on the spot and very carefully and slowly tried to make my way back to the escalators to find a member of staff or a sign. SOMETHING. I eventually found a member of staff who honestly made me feel like I was interrupting his very important schedule of standing against the wall, likely ready to help people who needed it but hoping no one did. Eventually I got him to direct me to the lift I needed, I just had to face the tunnel again.

So, big girls pants on and off I went. But now, somehow, it was even busier and I was even more invisible. I slowly moved forward until I found that I couldn’t move at all. People were rushing in all directions, cutting right into me and my chair, giving me absolutely no space to edge forward even more. And the lift I needed was down and on the right, meaning I had to cross through the traffic coming the other way. At this point I was having a full blown panic attack. I was overwhelmed, overstimulated, out of my depth and entirely invisible to every single person around me.

Suddenly from behind I hear “OI, get out of her way” and then there was a man beside me, lit cigarette in hand, asking if I was ok. I’m ashamed to admit that I would initially have judged him for finding him intimidating, yet here he was going out of his way to make me feel safe and seen. Still in a panic, I could start to see people listening to him. He was like a lolly pop man with the attitude and ability to clear a path in the most ignorant of people like a celebrity body guard. He parted the sea of people often with a “no I said fucking stop and let this lady through! Come on love, you go. NO, I said NOT you!” He checked to make sure I knew where I was going next once I got to the lift and carried on with his own journey like he hadn’t just saved my life. At least that’s what it felt like.

It felt like I’d be stuck in that tunnel, unable to move until the wee small hours when the bulk of the ignorant were tucked up at home or sipping cocktails at one of the thousands of bars in the city.

I got to the platform and the final tube that would get me to my train on time was there waiting. I found a member of staff and quickly asked her to help me get on. She told me to go to her colleague with the ramp two carts down and he’d get me on. I bumped up the speed and raced down the platform, arriving at her colleague just as the doors started to close. “But wait, she said you’d help me get on the tube!” “Sorry love, you’re late”.

He got me on the next tube and told me someone would be waiting to get me off and they’d get me to my 14.35 train at Paddington. I got off and as I found with my journey to Stratford, what they actually do is take you to the lifts and fuck off. In fact on the way, the GWR staff handed me over to the TFL staff to take me to the train (as I’d booked) and they stood there and argued the toss about who was going to take me, one of them even saying “can’t we just radio someone else to do it?”

So, flustered, confused and sweaty, I tried to remember where to go. He told me it was Platform 1 I needed, and thankfully Paddington is much more civilised and I felt I could breathe enough to ask a member of public to direct me.

I raced onto the platform and to the station office to be told, “the train leaves in 2 minutes on platform 10, you’re not making that one love.” FFFUUUCCKKK. He was very friendly and chill about it, explaining he would book me on the next train and there would be no problem rearranging my Passenger Assistance. “Great, when does it leave?” “4pm.” I asked whether there was one sooner, “surely that can’t be the next train?” Nope, he could book me onto another that would leave at 3, but would required a change over at bath. Fantastic, more fucking train hopping. Did I mention I hate public transport? Or most things containing the name public.

Anyway, I’m home and my train landed in Westbury just after 5pm – and hour later than planned. I cannot fault the GWR staff or service. My journey to Paddington was actually a breath of fresh air, the wheelchair parking was in first class and they still insisted I have complementary hot chocolate and biscuits. They were patient, friendly and not once was I made to feel like an inconvenience. In fact they all raved about the wheels on my chair, checked in with me mid journey and offered encouragement when I didn’t quite get my steering right and knocked things. TFL staff could really learn a valuable lesson from them who left me feeling humiliated, incompetent and unintelligent. But worse still one never felt more invisible.

I initially wondered why I didn’t see another wheelchair user on the tubes, but I now understand why. Perhaps it was coincidence, or perhaps it’s because everyone from the staff to the fellow passengers just see you as an inconvenient obstacle, a burden on their day.

I didn’t sleep well last night, I was up from 3 am. Witching hour as many of us injured call it. I woke with limited energy, but the stress from my journey home used more body battery than I used from the moment I woke up to the moment I left my friends in M&S.

Now I’m home and resting, trying my best to reflect only on the best parts of my day. But I wanted to share it all here, because travelling as a disabled person is hard. But travelling as a wheelchair user can be both freeing, and degrading all in one.

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!

Health and hope.

Friday was a big day. The wheelchair was very late being delivered, which meant I didn’t get to see Laura, Kalie and Amy and meant that I had a little stress meltdown. I don’t do well with plan changes or unexpected issues that mess with my scheduled plans. I build myself up for plans, I prepare, mentally and physically, everything is organised so my anxiety is chill and it quickly unravelled.

Nevertheless I now have a wheelchair! Seeing it again in person, I was reminded just how bloody big this thing is. That was the intention, the chair is specifically to allow me complete freedom in nature for long walks and adventures. While knowing it can get me round most shops, that wasn’t the key focus when choosing a chair. So we’ve got to work out some storage as it’s a bit of a beast and we don’t have an enormous house. I can’t get it out the house myself, we don’t have a ramp and aren’t sure if a ramp would work. I also need to look at getting a boot hoist on Motability so I can get it in and out the car myself.

Anyway…

I took it for a quick walk yesterday morning with mum and Riley and bawled my eyes out. I was finally experiencing the feeling of a brisk walk, I could feel myself moving through the atmosphere. I felt so free and alive again. Riley’s a way off long walks but I did manage a little bit with me holding the lead and him trotting alongside me. He was completely unbothered by the chair so I have high hopes for the future.

Getting the chair now also meant I could spend Friday having help working out public transport. There is a little UKCVFamily meet up in London on the 27th and I couldn’t attend as it would be too much physically. Now I have a chair I just knew I had to find a way to meet everyone, which meant public transport. I HATE public transport. It’s not because it’s dirty or anything like that, I get anxiety and sensory overload, I also feel the energy of everyone around me, which means that public settings are draining for me. I also get confused with working out trains etc, especially these days where my cognitive decline makes working out anything new a challenge. But the members were on hand to support me and I’ve booked trains and tubes from Westbury to Stratford, along with booking passenger assistance. This means someone will meet me, loads me onto the train with a ramp and take me to my “seat”, and vice versa for disembarking.

As long as I don’t think about the journey, I’m very excited for Thursday.

This feels like a big year for me, I’ve really come into it as a new person with a different mindset. I’m in my healing headspace and it feels bright and full of hope here.

My goals include being out more, reducing the use of pharmaceutical medications and focusing on natural healing. I’ve made great leaps with my energy levels and it’s come from nothing but avoiding low histamine diet to keep the MCAS at bay, watermelon and a newish supplement regime. No shit, nothing that causes additional side effects and nothing that I can’t bloody pronounce. All this has also resulted in a decrease in my inflammation and allowing my implant to work more efficiently.

I’m not healed. I’m coming up to 4 years post vaccine and this has been the first sign of improvement. My physical issues aren’t improving, my incontinence is getting worse despite my best efforts with endless pelvic floor exercises and as I mentioned my cognitive issues aren’t improving, in fact in some areas they are declining. So I’ve increased my brain training exercises, I’ll keep assessing supplements and if they work I’ll keep them. I hope to work with a kinesiologist this year, but initially I’d like to work on getting rid of the horrendous drugs that are doing more harm than good and making the improvements I can myself.

I don’t know what the point of writing all this was, I guess one some level it’s for accountability, but I felt the urge to write and so I did. I still write journals how I always do, I open the notes app and just type without much thought until I can’t think of the next word. It’s a brain dump and it’s also really refreshing to share my mindset with others. I saw Hannah this week and she told me I was glowing with energy and looked really good, the best part was that I actually felt really good. That afternoon my head pain was super high and I’ve been a bit off balance for the last 4 days, but I’m full of hope and hope can take you really far if you let it. So 2025 is the year of trusting my gut, and I truly hope that by doing that it will allow me to better help others because that really is what I want to do with this whole experience.

I’ll add that I think I know why the last few days have been off balance, aside from me foolishly trying to use all the energy I’ve been gifted; grief. I deeply miss my darling Bella and I’ve been feeling this week as much as I did the week after I said goodbye. Riley is here, making me laugh and keeping me entertained and is wonderful company, but that doesn’t stop me mourning the loss of my first soul-dog. This increase in energy is wonderful and it’s filling my mind with big dreams and a wish list of places to visit, but I do wish Bella was here to share this with me. Of course I know that the Bella she was at the end wouldn’t have enjoyed any of this, but I wish she could see the Chloe I am today, the Chloe who has hope and a smile for what the future could hold.

As usual I haven’t edited of proofread this, so my deepest apologies for all errors and I hope you’ve had a bright weekend with those you love!

A full and exciting day.

I’ve got a very big day ahead of me, so it’s lucky I’ve woken with brilliant energy levels. Yesterday I wasn’t so lucky and it was a forced day of rest which seems to have done the trick.

First order of business is Riley’s vet visit at 10am for his second lot of vaccinations, weight check and a check over of how his skin is healing. Following this it will be a big petshop shop as we’re running on treats which are absolutely essential.

This afternoon I’m seeing Laura, Kalie and Amy. I cannot wait! Because of the inquiry and getting Riley I haven’t seen my friends since the beginning of January, so I’m loving finally getting to see everyone on the days mums working at home to cover Riley. Tuesday I got to spend time with Han and Arlie, so I’ve no doubt my heart is going to feel so full by the end of today.

This evening I’m co-hosting a UKCVFamily zoom social. We held more of these during the Inquiry to give members a place to decompress at the end of the day, but have continued with 3 a week since as so many find them helpful and comforting. The welfare of members is so important, and I’m looking forward to this evening as well because I love seeing everyone.

But, before both of those social interactions something huge is happening. I’m getting a delivery with 4 wheels. The day has finally come that I get my wheelchair!!

The fundraiser has done better than I expected and I’ve added what I’ve managed to squirrel away myself. Mum has given me an interest loan to cover the deficit. The loan was offered and agreed on last year, and I’m aware just how lucky I am to be in this position. It’s a worthwhile opportunity that I can have paid off within a year so I’m not too concerned. I know I wouldn’t be here at all if it was for every donor and every person who shared my fundraiser, so an enormous thank you goes to all of you. Your actions and generosity are the sole reason this lady will finally have back some independence and freedom at last.

To say today is a big and busy day would be an understatement, but I’m very excited. I’m also very anxious and I have a knot in my stomach, but I know that this aid is going to allow me to experience more of life. So I will continue while ignoring the negative voices in my head and the internalised shame at even needing this, because it’s not my fault and it’s really not a choice. For now, it can bring me to great things in the hopes that one day I may not need it.

The vets are done, so now it’s the wait for the chair delivery. It was a great appointment and Riley is officially NOT underweight! I couldn’t be happier, and his ideal weight is actually the same as Bella’s was, where we were all expecting him to be a 30kg+ dog. Now I have to break the news to him that his food is being reduced!

Beautiful souls.

It’s a special day today. I’ve signed Riley’s contract and submitted his adoption fee. But it isn’t just special for that, it’s special for the lady who enabled me to rescue Riley so soon.

A fellow injured woman, Gracie, contacted me not long after Bella’s passing. She sent the most beautiful message, a message that came with a gift. Not only was she reaching out to express her sympathy at my loss, but that she’d like to pay the adoption fee when I found my next soul-dog.

But most importantly she’s been with me through everything since then; through my grief, through my decision to foster Riley and through every milestone and set back since he’s arrived. She’s supported, guided and advised me. In truth the last 6 weeks would have been a lot harder were it not for her calming manner and endless reassurance.

That brings us to today, where she has not only paid for Riley’s adoption, but donated more on top to help pay for my wheelchair.

I’ve said many times how lucky I am to be where I am, to have met the people I have and to have had so much support and generosity from everyone I’ve crossed paths with. This wonderful woman, despite her own suffering and on the day of her vaccine anniversary, chose to do something so incredibly selfless to better not just my life, but Riley’s too.

When I lost Bella I didn’t know how I’d cope, and I coped by running away from my grief. By running away so I didn’t have to face the pain, the loneliness, and all the places in the house my darling girl should have been. Bella hadn’t been herself for a long time, and she hadn’t been the bubbly pup I knew for even longer. It was an honour to have shared my life with her and to have learned so much from her calming presence, that I just couldn’t imagine that I’d be lucky enough to find such a strong connection again.

I didn’t expect to find myself offering to foster a dog just a month after saying goodbye to Bella. But he had Bella’s eyes and I can’t explain why, but I just knew I needed to help him. I certainly didn’t expect to find myself with a dog who carries so much of Bella in his soul. His soul and his shared spirit of Bella has helped my own healing heart.

I still miss Bella and I think I forever will. But today I got to formally adopt this beautiful dog in honour of Bella, and because of a wonderful lady called Gracie.

Gracie – if it wasn’t yet clear, I am so grateful to you. You’ve opened my heart and I get to share that with Riley for many wonderful years. I hope you’re snuggled up with your pups, knowing that you’ve changed our lives today. I don’t think I’ll ever feel like I’ve thanked you enough for that. 🤍

A day for me and MY dog.

I feel quite emotional today. Not sad emotions, at least they don’t feel heavy. But I’m close to tears and I’m unsure why.

The itching hasn’t been great, but today it is better. Saturday night I was up from 2-5am feeling like I had burning ants running over me. Last night I woke briefly, but was asleep just as fast.

The rescue called today, they’re sending Riley’s adoption contract over this afternoon. I think this is likely the source of the emotions. I’m incredibly grateful that an injured friend has offered to sponsor Riley’s adoption, she’s been a great source of support as I’ve worked with him the last 6 weeks. I’d be adopting him anyway, but it means the adoption money I’ve put aside can go to the wheelchair fund. I also reached out to a dog trainer to help with Riley’s lead walk.

I’d consider myself fairly good at training. I’ve always been interested and so it’s always been something I read on regularly. But I never expected to get a dog that needed to start from absolute basics like Riley and his loose lead walking leaves a lot to be desired. That’s probably unfair, he tries, but he’s hit a plateau that I can’t seem to break. I’m aware he’s still adjusting to this new way of life, with all the food, toys and love he could imagine. So he’s learned his basics and essentials and I’m just focused on making those bulletproof in all situations and with all people. A bit like Bella, he’s pretty good for me but doesn’t always respond to others.

I’ve also asked this trainer to help me train him to walk alongside my wheelchair and to help ensure he has unbreakable recall while out and about. His recall is good, but while I’m still lead training him it’s not something that’s been practiced out in the fields when he’s not within a metre of me.

I’ve gone on a tangent. But Riley and charity work has and will continue to be my focus. Both bring such joy to my life that I didn’t know I needed so badly. And the charity works gives me this sense of purpose and drive that I only ever experienced when competing in powerlifting. I truly believe I am in a very lucky position right now.

And that’s not even mentioning the energy levels! Today I woke up with 91% body battery. Ninety-fucking-one! My head isn’t too fantastic today, so I’ve chosen to have a slow day. Lots of training and playing with Riley and then sitting with a puzzle in between. It felt like a steady pace was what I needed despite the energy levels. When my head is bad the energy feels inaccessible, so it’s best to let the head take the lead and guide my plans for the day.

The other good news is that I can order the wheelchair within the next few weeks. Whether I go ahead with that or wait until after my dad’s 60th (5/3) I don’t know. Because I also need to order Riley a new crate; one he fits comfortably in and that he can’t get his nose or paws stuck when trying to open the door!

So that’s today. It’s been nice to take it a little slower after all I’ve been pushing to achieve the last few days and focus on the little things and some charity work. These days are equally as filled with achievements as the busy days. And I’m sure when I feel ready I’ll release the tears and let them have the freedom they’re requesting from me!

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.