Today, I woke up feeling like I needed to write. It’s true that I’ve not been writing a lot recently, I’m barely even journalling. Instead, I’ve been living, living and resting. I feel like many things have happened, that each deserve their own post. However, I just feel too exciting to break it down and drip feed it to you, so this may be a little longer than my usual ramblings.
Last time I posted, I wrote about my two very successful appointments and there’s no updates there. But I have been doing a lot of the research homework I was given by the FND neurologist, which has led me to make some changes to how I manage my time and energy, especially off the back of a really rough winter.
The winter saw my baseline energy level dip quite a lot, which has made everything so much more challenging. So, I made the decision that I had to be intentional with where and how I spent that energy. I knew if I wanted to achieve my 2026 wish list, I had to reduce crashes, reactions and stress. What some may not know, is that when you’re living with multiple chronic illnesses your body is always under stress. Then add in MCAS where you react to stress and CFS where you haven’t got the energy to deal with the stress or the reaction, and it’s a really shit cocktail. It’s like having a go at Ninja Warrior UK, in a wheelchair.
I have a few tools in my arsenal to reduce my stress levels, but then there are the normal life stresses which I have to actively avoid. That’s not to say things don’t piss me off, believe me they really do, but I have to use my tools to release that frustration or anger. Arguably the biggest tool for this, is to either write about it or handle it in the moment. I’ve been a life-long people pleaser, so saying when something annoys me isn’t natural, but I have to learn to release things. Eckhart Tolle says, if you can fix something in the moment, then do so, if you can’t, then accept it as if you have chosen it. I live strongly by this and it’s helping me honour my own beliefs and what’s in my heart.
But what has all this led to me achieve? I started the year strong by ticking going to a festive light show of my wish list. Hannah and I had a lovely, and freezing, evening at Longleat. I got to eat a burger and just have a laugh the whole way round. I always feel self-conscious when I first use my wheelchair around friends, and this was the first time Han had seen me use it. But as with everyone else who’s seen be in it, it felt so normal. We had a good laugh when my wheels got stuck on the walkway through the lights and I couldn’t turn. It was just a brilliant evening all round and a great memory to start the year off with.
After this, but not because of it, my health got the better of me. I was reduced to doing very little, with lots of pain. Adding health appointments didn’t help, the anxiety and apprehension drain my energy. This down time gave me the big wake up call I discussed above, the realisation that if I was going to achieve anything this year, I had to make some big changes and be strict with them. And it’s been hard. When your health rarely lets you keep plans and see your loved ones, you will start disrespecting your health to do things. Disrespecting is probably the wrong word, but I wasn’t honouring my bodies needs. If an on the day invite arrived, and I didn’t have plans, I’d accept it. Even if that day was clear to allow me rest for plans later that week, or if accepting those plans meant I also had to have a last-minute bath that I didn’t have the body battery for. I just did whatever it took to try and see my loved ones.
Now? Now my diary is planned at least a week in advance. There are no activities planned on consecutive days. Lower-level activities like a dog field with Riley I can book on my rest days, providing the following days activity isn’t high level. Some weeks, I’ll have two social activities planned, other weeks I’ll have none. It all depends on what’s been scheduled the week before. This doesn’t always go to plan either, because most days my body doesn’t cooperate with whatever is in my calendar. I have to make a judgement call each morning, an assessment of how I’m feeling, how my body battery is, how my sleep was and then decide what I can manage, and if a plan needs adjusting to make it accessible to me that day.
That being said, there was a last-minute plan that came up that I threw the playbook in the bin for. On Thursday April 16th, the report for Module 4 of the UK Covid-19 Inquiry was released. In summary, it was disappointing for the vaccine injured and bereaved. Though we were acknowledged by Baroness Hallett, who said, “Those who were damaged by the vaccine rather than protected deserve proper recognition.” It’s a very powerful sentence, but one that isn’t reflected in the recommendations made.
Despite repeated requests, the Inquiry had still not published the hundreds of case studies submitted by UKCVFamily members. Case studies that the founder, Charlet Crichton, spent months supporting and guiding each member to write. She worked with everyone individually to write a 500-word statement of their traumatic experience post-vaccine. Not just those who were injured, but those who lost family members to the vaccines.
That Saturday morning, the Chair of Trustees and award-winning author, Caroline Pover, video called me. Both still in bed and sleepy faced. She had an idea, could I help? Yes, yes I fucking can. If the Inquiry aren’t going to follow their motto of “Every Story Matters” and release these case studies, then we will. Sarah, the Safeguarding Trustee, Caroline, and I worked tirelessly for five days. Writing, editing, proofreading, emailing, more emailing, gathering consent from everyone who submitted a case study, and then the back and forth with queries. There was a lot of emails. Saturday morning, we started working and on Wednesday evening, Fallout from the Rollout was sent to Amazon for publishing.
The Monday prior to this, I started reducing my pregabalin again. That was why I had a clear two weeks, because I didn’t know what reaction I would have. Last year it saw me presenting to A&E and asking to be sectioned for my own safety, so I was making sure I was prepared for whatever came. The only thing I didn’t prepare for was how it impacted my sleep. I sleep through the night every night, but it was entirely non-restorative. My body’s stress levels weren’t reducing overnight, and I wasn’t getting enough REM, so I was waking each day with 20% body battery. To avoid crashes and flare, I try to avoid dropping below 20% body battery. Waking up with only 20% was torture and this lasted for over two and a half weeks. Starting the book, just five days into the reduction was a huge challenge. But not one I regret.
We poured over every single case study with love, respect and compassion. When we had to make edits, they were minimal to keep the case study as close to the original as possible, to keep the voice of the person who wrote it. The emotional toll of those five days cannot be underestimated, because every single case study was personal to us. These were the stories of our friends, our family.
For me, everything that happened, happened exactly the way it should. It felt so right that it was us releasing those case studies to the world, because to us those voices really do matter; they always have.
To have been part of the publishing team, working with Caroline and Sarah for this project was a real honour and something I don’t think I will ever forget. The pure adrenaline rush, waking up Thursday and seeing the kindle copy had been released and being the first one to order it. Then watching throughout the day as the hardback, paperback and audible were also released. What a fucking rush. I will forever be grateful to Caroline for inviting me to work on this project, and I will always be grateful to the members for trusting us with their stories.
The following weekend was my sister’s birthday, so I had very little time to recover and come down from my high. A huge thank you here goes to Sarah for reminding me that I had run out of L-theanine.
I rested as much as I could, but the weather was heating up and my body was throwing up more warning lights. I have orthostatic intolerance, which is mostly manageable, until it gets hot. This means that I get tachycardia when stood up, or sitting. This leads to dizziness, feeling faint, fainting, sweating, and fatigue. I did what I could, but ultimately by body was not getting the rest it needed. Nevertheless, Sunday came around and we had a family lunch planned.
We kept it simple with a pub lunch, and I’d been eating really well to avoid histamine, so I decided that as long as I didn’t have MSG, I’d eat whatever I fancied. This day I also met my sister’s boyfriend for the first time, so I put my mask on and set off to have a fantastic afternoon. And we did have a bloody fantastic afternoon, full of laughs, good food, and terrible jokes. Often the family dynamic can be tense, but this was just incredibly relaxed, and everyone had a great time celebrating my sister’s birthday. Naturally, this didn’t mean she escaped being roasted by me – it was Sunday after all.
For her birthday gift, I was going to be ticking something not just off my bucket list, but also off hers. I’d managed to get us tickets to see Lucy Spraggan at the Cheese and Grain, Frome. My diary was mostly clear from her birthday until May 1st, the day of the gig. I’ve not done a gig since the vaccine, I have terrible sensory issues, particularly with light and sound. It’s why I have tinted glasses and dark sunglasses for outside, along with multiple ear plugs for each occasion. I was nervous for how I’d cope with a gig, indoors, and big crowds. It turns out I had nothing to worry about.
My mum picked my sister up from work and brought her home, to save me that journey. The evening was all about energy management; Lucy wasn’t getting on stage until the time I’m usually asleep. They had a Greek food van at the venue, so we were going early so we could be as relaxed as possible, have some food and be ready for the early entry I’d arranged.
We arrived, got some drinks and ordered our food. We found a quiet table, where we could just sit and chat while we waited. Food arrived and it was bloody marvellous. If you hadn’t noticed, food is a theme for me, I try to enjoy it when I can and when I’ve prepared to eat something risky. I had antihistamines and mast cell stabilisers; I was going in hard!
The next part is irrelevant, but funny. My routine is I eat, and then I take my evening medication which includes liquid pregabalin. So, in a busy car park with a queue snaking round, and people still arriving, I stood there with my syringes measuring out my dose. I realised I was being watched by the next car, who gave me a big grin, so I can only assume they thought I was preparing to have a damn good time.
In we went, and thanks to the early entry and my wheelchair, we had time to refill our drinks and make our way to the front. And I mean right at the front; I’ve never experienced that before. We were at the barrier and Lucy, and the support acts were just a few metres away. I thought I’d struggle with the lights and sounds, but this was an acoustic tour, and I didn’t need ear plugs or anything more than my normal tinted glasses.
What a fucking experience for the memory books this was. My sister and I have been Lucy Spraggan fans for over a decade, and we both find her and her music relatable in different ways. To share this evening with Tash was something really special, and we both cried a lot. To make it even better, I didn’t fall asleep!
The day before, I’d slept terribly, so I expected to really suffer, but that didn’t happen. The L-theanine had arrived on the Tuesday, and my sleep was improving. So, despite not sleeping well the night before, I was sleeping very well since. I got into bed at midnight, and I can’t even manage midnight on New Year’s Eve, so waking the next day was tough but it was a restful sleep.
If I’d have done this last year, or even a month ago, I’d have been sent into a torturous crash that would have lasted weeks. However, I coped for the gig and I’ve coped since. And the only thing that’s changed is building better habits and being stricter with my time and energy. Along with supplements and nutrition that support by body in its recovery.
To add to it, on the Wednesday before the gig I went wedding dress shopping with Laura and Kalie for Laura’s wedding. I’ve never done this before so I was beyond excited. We had the best time, with Laura looking beautiful in every single dress she tried on. I think Kalie and I had the most fun, getting to pick through the dresses for Laura to try and I obviously cried. This was a really lovely, intimate experience than I’ll treasure.
I’ve achieved more big things this year, than I have in the last five years. And my health is worse; that’s the crazy thing. I have LESS energy, but because I’m working with it rather than making it angry, its rewarding me with these experiences. It’s like a Gremlin, with all the rules you must follow and if you don’t then everything is a challenge.
Learning to say no to plans or cancelling plans already made has always made me feel incredibly guilty. My friends and family all have full-time jobs, families, pets, children, and husbands. I’m just me and Riley, and on the face of it I have all the time in the world. Before this year, I would think that I should work to everyone else’s schedule and availability, because I’m always desperate to see my loved ones, I never feel like I get to see them as much as I want to. But the reality is that for about 10% of my time I am functional and trying to push that to 15 or 20% is detrimental to my health and to my life. By honouring what my body and health needs for that 90%, I get to truly enjoy the 10% and not get stuck in the crash cycle
I have to use my wheelchair and not be embarrassed by that. I have to eat food that doesn’t excite me to reduce reactions and enjoy occasions with “unsafe” foods. I have to allow people to help me when I need it. I have to say no to plans that don’t fit in a week that’s already been carefully planned, and sometimes I have to cancel. If I do these things, and that list doesn’t even come close to all the things I have to do, I get to really be able to experience more of what life has to offer. Because what life has given me this year has been incredible, I can’t explain how monumental it is to truly enjoy a lunch out and being able to be fully present rather than dulled down by pain, fatigue, brain fog and intense MCAS reactions.
This Saturday, I’m going to Gloucester with mum for a day out with my brother, his fiancé and my niece and nephew. I’m really excited to see how much I can enjoy of the day, just a week after my first gig since the vaccine when normally I would still be bed bound. I look forward to telling you all about it, and how the rest of this year goes. There will inevitably be ups and downs, I don’t doubt that I’m going to get it wrong at times, but I know I have the support of everyone around me and I hope there will be more ups than downs to come!
