I had an interesting dream last night, I was a little older than I am now and able to walk a little further.
Apparently, I was able to walk enough to find myself with 3 other dogs, gifted by friends. I had a Black and Tan dachshund, an English pointer (seriously, Riley is enough, don’t anyone ever gift me a pointer), and a harlequin Great Dane (a dog I one day hope to get the chance to own).
They were all young, and I was in a small clearing in a woodland area working individually with them on their basic commands and loose lead walking. A little amusing really, as Riley still insists on very tight lead walking.
I’ve always dreamed of being around lots of dogs. About a year or two into getting sick I even researched the idea of becoming a dog trainer, with a hope to one day have my own property to run a doggy day care. But currently, I’m researching into becoming a therapist. With the only hurdle really being how to fund 3-5 years of part time education and how to achieve it when I couldn’t even manage weekly choir at the start of the year.
But it’s interesting to me that my dream was with me older, and being able to walk a bit further. Most interesting, is that today I received an email to say my “rehabilitation referral” has finally been sent. This feels quite monumental given the fighting I’ve had to do for over 5 years to finally get someone to recognise that I do in fact need help to rehabilitate or make my conditions more manageable.
I’m trying to not get hooked on the word rehabilitation, largely because it was made clear that recovery was unlikely. I’ve certainly had enough disappointments over this time to get caught up in my dreams of being healthy again.
I’ve also been thinking a lot about aging. I’ve developed skin care pigmentation changes around my eyes, the skin around them having less elasticity and forming soft wrinkles, and finding the occasional grey hair.
Frankly, I think it’s criminal that I’m aging at all. My life has been on hold since June 2021 and I don’t thinking I’m asking a lot for the aging process to also be put on hold when I don’t feel I’ve truly lived my life yet.
I always thought when signs of aging started, I’d embrace it with open arms, knowing it was a sign of how much life I’ve lived and how many experiences I’ve had. I’d have welcomed the wrinkles with open arms, knowing I’d worked hard to earn them. Thinking, somehow, that each grey hair held a story, an experience and a memory.
I’m embracing it, but begrudgingly. And with the hope that when the signs become more obvious, that I’ll have some big and wonderful experiences under my belt to help make me feel worthy of the wrinkles, greying hair and softer skin.
The consequences of my birthday actions finally caught up to me yesterday, and today.
It didn’t help that my memory failed me yesterday morning, so as I led in bed after breakfast, my Hemicrania and occipital neuralgia were ramping up for a fight. When it finally reached a solid 25/10 and my droopy face had returned, I wondered, “did I actually take my pregabalin?”
I couldn’t remember, absolutely no recall. I eventually made my way downstairs to where I keep my meds to see if it would trigger a memory. It didn’t work. I weighted up my options, and decided I was in sufficient levels of pain that I’d rather take it and end up high from double dosing, than to leave the pain getting any worse.
I didn’t get high so I guess I had forgotten, but taking it late doesn’t really have the same effect and all it did was take the edge off. Juggling chronic illness, meds, supplements, life, energy and everything else is hard work, but it’s even harder when you rarely have the capacity to create memories anymore.
It’s something I learned a lot about in the FND education course. I now understand why it’s hard to make memories or recall information (which I’ll write on soon as it’s quite interesting!) , but most days there’s little I can do about that. So we roll with it, and hope I don’t forget something major like forgetting to take my meds.
It does make me wonder sometimes why I’m pushing through withdrawals to try and come off the pregabalin. I knew I was signing up for higher pain levels, and hopefully with the really slow reductions the pain won’t be like yesterday. But it’s still quite scary to step into the unknown. However, I know the drug is horrible and I know in other areas it’s not helping and worse, contributing to some issues. It’s got to go.
It’s a bit like choosing whether to do something without my walking stick or chair. It’s a gamble, and I don’t know for certain how something’s going to go. Sometimes if I go to eat out, park right outside and don’t have far to walk, I might risk no stick. Often I find this was the wrong decision, but we know how I feel about being seen with aids or being seen as disabled.
It’s a bit daft really, because without the stick I become more disabled very quickly and it’s visually far more noticeable than if I’d just used my stick. In fact, I look like a bit of a one man rave, but I still make this mistake.
I thought having a stick that didn’t remind me of old people would help, and I suppose it does to an extent. It’s nothing exciting, I certainly can’t afford a stunning stick from Neo Walk. It’s simply black and silver with a comfortable ergonomic handle, a dress up or dress down stick. But to do things without it is a gamble, and the house (FND) always wins.
I’ve lost my train of thought now, but I know we started with the consequences of my actions. Ultimately, everything comes with a catch and I have to weigh up if that catch fits in my diary, or whether I’m mentally strong enough to handle it, or how bad it’s likely to be. Like weighing up the risks of coming off the pregabalin and deciding I have to try.
I did well for it to not hit me until Tuesday I think, I’m going to take that as another win. But I really do hurt. And the heat doesn’t help with inflammation and recovery. But I kept the week clear because I’d already decided that I’d take whatever price my body would demand I pay.
I’ve still managed to do things, which in itself is another achievement. While bed and chair rotting, I’ve been looking into what I might like to do with my life. The universe has been sending me signs, and I think I’m at a point where I need to start listening. Not that I can work right now or move into my dream bungalow tomorrow, but I can plan and take steps towards those dreams and that’s what I’ve been looking into.
It’s quite exciting actually. The one thought I keep coming back to, and I know I’ve mentioned it before, is that not many people get a chance at a do-over in life. A complete fresh start feels like a gift, even if it’s not one my body or health are ready for me to make use of yet. But I don’t want to waste it – I’m fairly certain I won’t like what the universe throws at me next if I was to get it wrong again.
So that’s me and how I’m coping with my jail time this week. Lots of electrolytes, water, rest, naps, snacks and research. It’s very rock and roll, and also very intriguing that I’m not as miserable as the pain is making my face look – which looks like half of it was painted by Salvador Dali.
Enjoy that amusing thought, it’s long past my bedtime!
I’m aware that the majority of my readers also suffer with chronic illness, so I wanted to share a little about how I got to pull off this weekend. I’m not better, in fact my energy levels haven’t recovered fully from the dive they took over winter. I still rest just as much, if not more, than I did last year. But last year I’d have never pulled this off so smoothly.
Last year I did the same family bbq, and I crashed hard and spent weeks recovering, despite cutting the day short.
I fight with my body less, I sit more, set time limits on activities and try not to feel guilty about not doing as much as mum around the house. I’m strict with my diary, and book it out like I used to when I was working.
This occasionally changes when seeing friends, I’ll get up at 10 to exercise Riley, meet at 11, home around 1-1.30pm and then rest for the afternoon instead of another activity. That’s a standard day for me, but often the afternoon activity will be something I can do sat down.
Being really structured with my day, and intentional around where I spend my energy, I reduce crashes and the severity of them. This means when I do things, I can give them a little more time, energy, cognitive function, purely because I’ve not wasted it elsewhere.
The other change is supplements and nutrition. Now I’m gonna be honest, I’m not shoving kale up my arsehole and snorting protein powder. Low energy, remember? So it’s got to be manageable and manageable for me means convenience.
I start the day with hot water, freshly squeezed lemon juice and a gut healing honey from Just Bee. This is paired with a Belvita breakfast bar and my meds. The supplements I take at this time are a strong multivitamin, I use Oxford Vitality and tolerate this well. I also take 1-2 CoQ10 from British Supplements. Two on days I need to be up and active a little earlier.
Lunchtime I take the second CoQ10 if I didn’t take it at breakfast. Dinner time is just meds. BORING.
At bedtime I take 1 magnesium and 200mg L-Theanine. If I’m going through the withdrawals impacting my sleep, both of those get doubled, if that doesn’t work then I add in melatonin temporarily.
Now the only thing that’s changed to see the improvement in recovery time, is the CoQ10 and honey/lemon/hot water in the mornings. I’d already implemented the strict routine and energy planning, but since adding these my recovery is a lot smoother and I go into less prolonged crashes. I added them at the same time, but I believe it’s the CoQ10 making the difference. It’s also helped me be able to go a little longer when doing activities like this weekend, which is a double win!
The lemon and honey have been great additions though, simply because I have a lot of irregularity and gut issues and pain. These are a lot more controlled now, including the reflux that’s been plaguing me since I was first introduced to Indomethacin in 2015/2016 and it damaged the lining of my stomach. No one warned me to take it with a substantial meal and a stomach protector. Then of course I wasn’t warned about the dangers of long term PPI use so I could keep taking Indomethacin to control the Hemicrania.
Fun fact, my neighbour has major gut and reflux issues and I recommended the honey/lemon/hot water combo to her. She reported last week how beneficial it’s been for her, as did a lady from mums work who we recommended it to also.
I also use my chair more frequently when I go out. Last year when I had it, I’d still try and push through to get round a small shop or if I was just picking up a few bits. Now I don’t fight it, because my legs are worse and I’m conscious of not pushing my body beyond its limits simply because “I used to be able to do this” or worse, thinking I should be able to do something. The self-gaslighting as a disabled person is a fucker.
If I’m just popping to the 7-11 down the road for one or two things, I use my stick, but anything more and the chair gets used. This means less energy spent, less pain, less fall-risks while out or even after at home because I’ve used my legs beyond their “safe” limit. It also means I might be able to pick up a few bits mid morning and make something simple like fajitas or salad for dinner. Two activities in the same day would be a hard no if I’d fought with my legs around the shop.
I want to add that none of this is advice, recommendations or toxic positivity. It’s just what’s working for me right now, and in 6 months it might be something completely different. But it’s important for myself to document what has been beneficial to add/change and in what way.
The routine part for me is easy, I’ve always been keen on a routine and nothing changing which can sometimes make chronic illnesss and it’s unpredictably very challenging for me. I don’t want to have meltdowns and throw toys out the pram, but sometimes that’s where it leads and I just gotta roll with that too.
Yesterday, I managed to pop out for lunch with mum to thank her for her help this weekend (I didn’t have food prep and dishes energy!). I also got to make a little joke as we passed JD Sports; I announced I needed to go in on our way back, when asked what for I told mum I wanted to treat myself to some new running shoes for my birthday. Luckily she’s my mum so she has to laugh at my dodgy humour! Instead I’ll be buying myself my annual orthopaedic pillow replacement and my increasing neck pain is telling me that the current one has reached the end of its usefulness.
None of this is to say that I find these things easy, these days and activities are still really hard for me. I’m still anxious about being seen in my chair, or using my stick – especially when I trip over it or my legs are so bad my arms start joining in. This is a new thing, usually it’s just my legs doing their own thing, but the arms are starting to do similar if they don’t have a job. I took Riley to a secure paddock the other day, and my legs and arms were going wild.
I’m a work in progress, I probably always will be, but I think recording what’s currently helping me is good because I actively avoid tracking my symptoms but tracking progress feels manageable.
What a weekend I’ve had! Yesterday was my birthday, and for anyone curious to know, I did in fact turn 21 and no I won’t show you my ID for proof. She’s on holiday.
I’m absolutely exhausted but my cup is overflowing with the love and joy I felt showered in this weekend.
Having chronic illnesses and being disabled means things have to be planned a bit, prepared in advanced and then cling on tightly to the hope that my body won’t throw on the check engine light. Somehow, I pulled off celebrating my birthday across two days with all my loved ones and for once, I’m actually thanking my body for giving me this gift.
Friday night I met with the girls at one of my favourite pub/restaurants from before. The Three Daggers in Edington is a short drive from where Han and I used to live, and I love any opportunity to go back. Han, Laura, Darcy, Kalie and I all met to have some wood-fired pizza, some drinks and a lovely relaxed evening. I even pushed the boat out and had a few gin and elderflower cocktails!
The food was to die for, but the company was what really sold the night. I honestly don’t think I could ever spend too much time with my friends, but to have them all together is a real treat and something I’m incredibly grateful for. We chatted freely about anything and everything, even discussing the proposed in-patient pain clinic I’ve been referred for, and why I try so hard to mask my symptoms when they come up. I can tell these girls anything, and I’m a truly lucky lady to have such incredible support and love. Of course we spoke about plenty else, the highs and lows of raising children, work, family. Everything was on the table and it just felt so good to share the night with them all!
Saturday, my birthday, we had a family bbq planned with my parents, sister and her boyfriend, Marek. Of course I LOVE BBQ food, and I also love being Chief of Fire and Tongs (yes, that is my official title). But to manage it takes a lot of pacing, and a lot of help from Mum too.
We spent the morning, after my usual rest period to get over how yucky I feel in the mornings, slowly working through tasks to make the day ahead relaxed and manageable. I’d do a small task and rest, and repeat until the house was presentable, garden set up, food as prepped as we could get it, and drinks cooling in the fridge.
I’d don’t really do portions when it comes to BBQ food because I want it all, so we had burgers, kebabs, corn, sausages, salad, coleslaw, potato salad. The whole works.
My family arrived and I had some more lovely gifts added to wonderful gifts the girls got me. We got drinks and went and relaxed in the garden for a while, just chatting until I was rested enough to kick the bbq into top gear. Food was cooked, eaten and we settled in to let our food go down with some cards against humanity. For which I probably owe the neighbours an apology, their kids probably had an intense education.
But before we settled down, as I went to go upstairs, I realised there were some visitors at the door. It’s been two weeks since the doorbell told me the batteries were dying and I still haven’t remembered to change them!
Han, Jordon, Ivor and Arlie were on the doorstep with a cake, candles, flowers. They sang me happy birthday, I blew out the candles (that the wind already blew out) and got the best cuddles from Ivor and Arlie! Honestly this was just the icing on the cake for my weekend, and the cake itself was magnificent! It felt like my own little Love Actually scene – “it’s Carol singers!” That they’d take the time to come by with a little song and lots of cuddles just reminded how incredibly lucky I am to have the people I do in my life, and how truly loved I am. Even more so when Ivor sneaks up for a cuddle!
Riley kept popping his head round the door to show everyone his ball, proud little man that he is, and thankfully had been on his best behaviour all day. He decided that he wouldn’t use them as bowling pins to my relief, and saved that for my dad and Marek.
I ended the day with a video call with my brother, his fiancé, Ben and Pat, and my niece and nephew, Fifi and Oscar. That rounded the day off and I couldn’t have asked for a more perfect weekend to see and speak to everyone I love so dearly.
Not to mention all the messages that I’ll have to find the energy to respond to today. So many reached out, shared memes, photos and lovely messages.
This weekend really was a big ol’ middle finger to chronic illness. To have had so much love and fun in two days is unheard of for me, and I really mean it when I say my cup is overflowing with all that love and will keep me going for a long time.
I’m a lucky lady to have so many people who care about me, support me and who helped make this weekend achievable for me. I was pushing my luck trying to do everything on consecutive days, but it paid off.
Riley was on his best behaviour all weekend, no mishaps with the bbq or knocking people over with his enthusiastic welcomes. Just a happy boy , surrounded by people willing to throw his ball and a burger of his own to join in with celebrations.
I hope you enjoyed reading this as much as I did writing it. Sometimes the stars align and let me do bigger things like this weekend. It doesn’t always work that way, and I couldn’t have done it without everyone’s support and help, but we did do it and I’m a very happy, grateful, tired lady!
Ps. This weekend ticked off more things from my “Things I want to do in 2026” list. A list generated around no longer waiting to be well to live life. We’re halfway and I’ve made cracking progress!!
Following from my last journal entry, I want to try something different. I want to try and work harder to acknowledge all the things I am, that aren’t “fat and vulnerable”.
I’ve always judged myself harshly, in a way I wouldn’t even consider judging others; in a way that I personally feel is despicable. I actively call people on judging people based on their physical features, so why oh why do I let my mind judge me that way?
That makes for an easy start. I’ve not always been the best human, I’ve made mistakes and hurt people, but from that I learned some heavy lessons. Now, I always try to be kind in every interaction and if I feel uneasy about something I’ve said or done then I address it with that person as soon as possible. A simple “I didn’t like how I spoke, I’m sorry and I’m going to do better”. If I know I’ve not handled something well, I will take accountability for it.
I love that I always assume the best in people and try not to judge them based on their worst day.
I respect others boundaries, I think that’s the absolute bare minimum everyone should do and so I’m always very conscious about not crossing lines.
During conversations, I sometimes catch myself trying to relate to something the other person has said. I know this isn’t helpful a lot of the time, so I try my best to correct myself and give people the space they need to talk. If I do this, then I actively redirect it back to their situation and remove my experiences from the discussion. I find it really triggering when others say things like “I totally know what you mean because….” Then the conversation is switched to them and the space I needed to talk is forgotten. But I try my hardest not to do this and correct it if I do notice I’ve done similar.
I am a people pleaser, and it’s always been a need of mine to try and help others. But I recognise, more so now, that it’s not always helpful or what that person needs. They also may not need my opinion but just the space to talk and feel heard. If I’m unsure, then I ask what they need from me in that moment so I don’t get it wrong.
Side note: a lot of these come to how I handle myself around other people, but since getting sick my interactions are much smaller and reduced. So I’m more conscious of these things now because I’m aware that the limited social interactions have had an effect on my social skills.
I like how, despite my regular masking, I am actually far more open and honest with those around me. And with anyone who asks questions. Like writing this blog, bearing my scars to anyone who reads these posts, because I spent my whole life hiding who I was to the point I didn’t have an identity or personality of my own. I’m really proud of the work I’ve done to get to know me and to get comfortable with letting others truly know me too, even if that still feels uncomfortable and scary at times.
I’m really proud of everything I’ve achieved in life, even when at the time I didn’t think I was accomplishing anything. Hindsight always comes too late, but I’m grateful it arrived and showed me just what incredible things I’ve been capable of at different stages of my life, including since getting sick.
I love that, no matter how hard things get and how frustrating life can be, I don’t give up. I mean I tried giving up once and something told me it wasn’t my time. I hold onto the relief I felt, and I’m really proud of myself for not letting those thoughts win since. Not just in that sense, walking is incredibly hard; it’s painful, exhausting and often unsafe. But I still walk; I haven’t given up on the idea that it’ll improve one day. I haven’t given up the idea of being able to work in some capacity or that maybe one day I might feel deserving of love.
I trust in my gut. My gut tells me that I will build a life that is fulfilling and full of love and joy, it just may not look like the old me imagined it and that’s ok.
My favourite part of me, is being Auntie Chlo. The fact that all the kids in my life love me and think I’m really cool. They certainly don’t see me as fat or vulnerable. They see me as fun, cuddly and a safe person to talk to. They might ask why I’m in a chair, but that’s quickly forgotten when they realise the joystick is in their reach and they can have a little ride-along.
I love the power of my writing. My English teachers would never believe that I enjoy writing, or that I write at all. But it’s powerful to me, and I’ve been told that it’s been powerful for others too. That means a lot to me, that these words on a page that usually take little thought, can actually mean something to others.
With the work I’ve done in therapy, I’m really proud of myself for learning to set boundaries. I’m still practising and I still get it wrong sometimes, but I’m trying and that’s a huge improvement to previous me who would always put others first, often to the detriment of myself and my needs and wants.
I really love my hair and my eyes. About the only thing I do for myself now is pay for a decent haircut at least once a year, because I now love the hair that I spent half my life resenting for being so big, unruly and heavy.
I’m really proud of myself for when I came out to my friends and family, who apparently all suspected I might be gay. I’m also really grateful for how they all received it, how they held my truth with gentle hands and how they let me come to the conclusion on my own. The old me, who didn’t know who she was, would have never had the courage to admit that part of me existed. In fact, she thought I might have been a danger to others because she didn’t understand her thoughts and wondered “is this how serial killers or predators think”. I feel really sad for her, that she spent so long fearing what she might become, because she just didn’t understand herself or her thoughts. Life could have been gentler if she only knew that she was bisexual and not the next Jeffrey Dahmer.
I really love how I appreciate the little things, especially now. How I run (waddle) as fast as I can to go and stand in torrential rain, bare foot. Or how I actually enjoy watching the bees collect pollen in the garden and how my heart melts when Riley gets so excited his tail spins in circles. I love how the breeze feels when I’m out in the fields.
I love how deeply I love. I love that I’m not afraid to tell people I love them or appreciate them at any opportunity because you just never know if there will be another opportunity. So I say it in the present moment, and don’t wait.
I love that I’ve chosen rescue dogs to live alongside me and accept me as their Velcro human. I love that Bella loved me for 12 long years, even when life slowed down for us. I love that Riley is forgiving of me on the days when I tell him off because I’m having a bad day – though he is still a twat who’s incredibly stubborn. But he’s my stubborn twat and he’s really happy now, especially compared to when he arrived. I gave them both homes full of love, where they could be valued, spoiled and happy.
I’m glad that I try to use my pain and my experiences to help others feel less alone. To feel lonely is one of the worst emotions, especially feeling alone with health concerns. I’m really glad I try to turn that into something positive.
I love that I can still laugh. When life is hard and complicated, it can be really easy to forget you’re still capable of having fun and laughing, that you still deserve those things. So I’m glad I’m quick to laugh.
I love that as I’m writing this, I’ll get halfway through a point and suddenly think of something else. I genuinely didn’t know I loved this much about me. It’s probably a good place to end this, or I think I’ll be using a lot of energy to think and type.
My friend told me to try affirmations and I genuinely think this has helped a lot. I’m not perfect; I make mistakes all the time, especially with myself. But I’m really trying to treat myself like I do others, it’s just the undoing 32 years of programming can be quite hard at times.
As for how frustrated I’ve been feeling, I know it’s normal. Sometimes it’s just a lot louder than I’d like, but it’s led me to do some really honest writing. I’m aware I’ve not been journaling as much, and that could be why things have gotten so heavy to carry on my own, but maybe I needed to reach that point so I’d let people in and start writing again.
Today is also my 5 year vaccine anniversary, so it feels really nice to shower myself with a little love on a day that can be quite triggering.
This one’s going to be quite tough for me to write and even harder to post publicly.
I’ve been feeling really emotional lately, teary, ragey, sad and frustrated. And therapy today helped me get to the bottom of it, and my therapist asked whether it would be so bad for me to let myself feel how I’m feeling, and let other people see that too. The answer was that I’m scared if I let myself feel it, it’ll be all consuming. And if other people heard it, they may think I’m attention seeking or that I just need to lighten up.
I mask a lot, but for the most part I can be accepting of my limitations and situation now. That doesn’t make it any easier, it just means I use less energy fighting it. But often I mask and tell people I’m fine or coping well. I’ve always done that.
My situation is shit.
Everything is hard, whether that’s getting up in the mornings, having a bath, playing with Riley, or just trying to get through the day. Right now, I’m sick to fucking death of everything being so hard.
I’m sick of needing help, I’m sick of fighting my inner turmoil to try and accept help, I’m sick of it all.
Saturday mum and I popped out for a few bits. The main reason was to go to curry’s to look at some tall fridge freezers to see what would be easier for me, because our under counter fridge and chest freezer are becoming more challenging for me to access. Veg drawer – too low now. Freezer – can barely lift the baskets to access everything underneath, also can’t reach down to most of it without difficulty. I hate that this is my reality, but it is. After we decided to have a little look in TK Maxx. I haven’t been out for a while and just fancied a mooch.
Back in December, I sent a letter of complaint to TK Maxx for how inaccessible their Trowbridge store is and they assured me they’d forward it to their manager to reassess the store. That, quite clearly, hasn’t happened. In my chair, I can’t turn in the aisles, and some of them aren’t big enough for me and someone else to pass. Added to that, some people are just cunts. So I might be near the end of an aisle, that fits both of us, and they ignore me when I ask them to let me pass. This means I then have to reverse, not being able to see behind me and trying get out backwards. But of course, someone else might come down the end of that aisle I’m trying to escape from and then I’m trapped. Purely because some people are massive twats and the store isn’t really accessible for wheelchairs. They also love to stack baskets in the middle of aisles.
I left feeling like an inconvenience, like I just wasn’t welcome. A complete hindrance to everyone else’s shopping experience. I still needed to go to the garden centre to get Riley some more balls, and we said we’d grab a coffee there. Feeling hugely embarrassed by being an inconvenience to others I used just my stick, despite the fact my legs were buggered. We got to the cafe and mum necked her coffee, then said she would leave me there and have a quick look at the flowers outside.
Overwhelmed by my limitations and cunty people in TK Maxx, I burst into tears. I wanted to look round the flowers too. Mum ran to the car and got my chair and we made sure I didn’t go home feeling unwelcome in the world. We spent an absolute fortune and Sunday I made sure to totally fuck my body by planting them all.
The result being I got stuck on the ground in the garden, after my body collapsed on me, and we spent the next 20 minutes trying to lift me off the floor while in complete hysterics. I did this, because what I needed was to feel like I could do something. I had to plant that planter and I didn’t want help because I needed the sense of achievement. I needed that boost. The caveat is that I’m in more agony than usual and can barely move. There’s always a consequence, even if I don’t push that hard.
The reality is that everything is hard in one way or another, and every single day I find something I can’t do. I’ve been fiercely independent my whole life, so to need help is incredibly uncomfortable. I’ve always been the one that helped everyone else, the one my family didn’t have to worry about. But I can’t be her anymore, my body won’t allow it. But I hate asking for or accepting help still. I hate being seen to not be capable.
I also feel left behind. Not that people make me feel left behind, but that I’m coming up to 33 years old and I don’t have a career, a home, or a partner and realistically I don’t see those things on the horizon.
Yet, I spend my days dreaming about having my own bungalow where I can have people over for bbqs and games nights, where I can play Auntie Chlo and have the kids in my life come make a mess of my kitchen with cupcakes and crafts. Where I can build a life of my own, independently, around my limitations. A life filled with love and mess and joy. A life I know I can never access without the ability to work or afford a home of my own.
This brings me round to the other reason I mask, to the reason I don’t really let my friends see me like how I was today in therapy. I’ve never said this to anyone until therapy. My biggest fear, aside from spiders because who needs that many legs, is that people will see me how I see myself.
I’ve spent my whole life hating my body, I never felt at home in it. In fact, more often than not, my body disgusted me no matter what size I was. Until I started powerlifting, and the last few years before getting sick I can wholeheartedly say that I loved my body. It showed in the way I took care of it, in the genuine smile I’d have, in the photos I’d willingly take and post. I finally felt like me and my body was so strong and capable. I felt so connected to every fibre, cell and muscle.
Now, I’m back to hating my body; hating how it looks, hating how it betrays me and hating how it makes me feel ashamed to be seen (along with being ashamed to be seen as disabled). I’ve always had a body dysmorphia issue, and now it feels more vicious than ever.
Fat and vulnerable. That’s how I see myself now, and I don’t want to see myself that way. And I really don’t want others to view me that way. So I go out with a heavy dose of anxiety that I might bump into someone who knew me before, and that this will be how they see me. But really, I know there’s nothing worse than the fact that I see myself this way.
I know my friends and family don’t view me that way, they’re far too bloody amazing to do that. But it’s the fear about it coming true, and then the looks of pity. Because I pity myself enough already, and I hate how I view myself already. I couldn’t cope if others viewed me that way.
Truly the idea of posting this is terrifying but I also think I have to. I’m not letting people in, I’m holding on to that mask; the brave face and words of platitude. All so people don’t know just how fucking hard every day and every task is, so they don’t know how much I resent that, how much I sometimes envy them and that ultimately there’s a part of me that just hates myself and my body.
That’s a brutal thing to admit, and, unsurprisingly, it makes me feel very vulnerable. But right now the bucket is overflowing and I can’t keep filling it up by not being willing to face these feelings and thoughts. I’ll be ok again, and I will feel genuine acceptance of my current situation again. But right now, I just have to be honest with myself, let myself cry, let people in to this dark reality and empty the overflowing bucket of emotions.
If you’ve got this far, thank you and I hope this hasn’t been too hard to read, or triggered any feelings of pity that I won’t know how to handle. I appreciate everyone who reads this little blog of mine, and I do have some appointment updates to write about. But this one had to take priority, or I’d have put the mask back up and carried on like I’m not ready to scream or cry at a moments notice.
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!
Today was another appointment that went well. It usually does at my reprogramming, they’re stress free and the staff are a good laugh.
I was able to discuss yesterday’s appointment with my neurosurgeons nurse practitioner, along with the issue that widespread inflammation is causing me. Especially in relation to my Hemicrania and occipital neuralgia, which is to say it becomes excruciating when I have high inflammation. Along with my head, it causes nerve pain in my hands and feet especially.
With my head on top, it’s truly unbearable and usually arrives around evening time. Currently the only thing I can do is apply volterol, but I have to limit how much of this I can use. Despite this, the high inflammation is getting worse, happening upto 3-4 nights a week.
However, the NP was fantastic and is writing to my GP to push them to actually investigate this rather than passing it off as an another complex symptom they don’t know what to do with. We’ve ruled out MCAS as the cause, so we need them to look for the reason this is happening and getting less manageable. So to know that she’s going to help push my doctor to investigate this properly is reassuring.
Overall, while the lead up to this week was daunting, I’m really happy with the outcomes. It feels like I’ve made the most progress with these issues than I have in the last 5 years. At least in terms of the NHS and getting some support. I do a lot myself as I’ve previously discussed, but I am limited in my knowledge of what my body is doing and why it’s so challenging to live with the body I have now.
There’s only so many supplements I can add in the hopes they fix the issues I’m dealing with. They help to an extent, but my legs and inflammation are beyond anything I’ve tried to help.
Now I’ll be resting for the foreseeable future, with a little sigh of relief that this week I was finally seen, heard and most of all, believed.
CoQ10 is not the answer to everything, but I do feel a little brighter in my suffering. If that’s a thing.
The 3 days bliss I had were fantastic, but I’ve been paying the price since. I haven’t seen anyone, and my only adventure out was to take my chair to Swindon for its service last Tuesday and pick it up on Thursday. Outside of this, I’ve been back to bed and chair rotting.
It seems to have worked, I am starting to feel better today. I have therapy shortly, and only have plans on Wednesday and Friday this week. It’ll be a few hour with friends on each day, which I really hope doesn’t cause the level of rest I’ve needed the past week or so. Even so, it’s going be good to see people and escape the house for a little bit.
Edited to add: Wednesday was a day with my Goddaughter and her parents. Nothing crazy, we went to a local lake/woodland for a walk which was exactly what I needed. The peace and healing of nature, with the joy of sharing it with loved ones. I even got to limbo a gate in my chair like the big kid I am!
Next week I’m in Southmead on Tuesday AND Wednesday. Both early appointments which will see me leaving between 8-8.30 which is long before my “functioning” time. But it’s necessary. Tuesday I see the functional neurologist regarding the FND, the appointment everyone hopes will bring in the help and support I’ve needed for nearly 5 years.
Wednesday is to see the reprogramming team and my neurosurgeon. Truthfully, I don’t think the programme is the issue. I’ve had issues with inflammation since the vaccine, and it’s only getting worse, despite the reduction in histamine foods. I don’t think it’s an MCAS issue, When my inflammation is up, it’s like it’s pressing on the nerves in my head and causing truly unbearable pain that nothing I do helps. That’s not an issue with the implant, but I honestly don’t know where else to turn.
I’ve had issues with my head and neck since the vaccine, it was the first issue to make its presence known. I’ve told everyone how it feels like my neck can’t support my head. I cannot be upright and unsupported for more than a few hours without pain and issues. Even when upright I’m normally supporting my head on my hand to appear “fine” and delay the pain.
But mostly I’m dreading the appointments, and not just because of my anxiety around appointments. 2 days in a row, early mornings, and a level of fatigue that I’m really struggling with. Southmead is about the same distance as where my chair went for its service, when I dropped it off I was confined to my bed for the rest of the day. The chair was ready the next day but I couldn’t get up, I knew I couldn’t do the drive again. So I went Thursday, when I felt like I’d be able to do the drive safely. And I haven’t managed anything since. I did those drives at lunchtime, during my “functional” hours.
Managing my health is challenging at the best of times, even harder when I do my best not to appear like I’m struggling around other people. I’m working on that but it’s not easy, my health makes me uncomfortable and I don’t want it making others uncomfortable either. But it’s also exhausting wearing that mask, pushing my body beyond its limits to have a few hours where I can pretend everything is fine.
Those hours of being “fine” do a lot for me, wearing that mask so I can just focus on enjoying something and putting a blindfold on so I’m not distracted by my health too. I’m sure that sounds a bit silly to most, but to get a little taste of joy, and life, like how I used to is what keeps me going.
So I hope, for everyone, that this week is easier and lighter. I hope it for myself too so I can enjoy my pockets of joy and some time in the sun with Riley!
The CoQ10 arrived quicker than expected and I got to start it yesterday. I’ve been dealing with unmanageable pain from HC and occipital neuralgia for a few weeks now, so to say I’ve been inactive doesn’t quite cut it.
But today, despite the pain, I managed to do a fair bit of work on my laptop, played for longer with Riley in the sun and helped dry up dishes for my mum. This might seem small, but it’s pretty big. It could be a total coincidence and I’ve just managed to access my energy a little easier, like Saturdays cleaning, but it could also be a good sign from this supplement.
I wrote the above paragraphs on Wednesday, now it’s Friday and I’ll tell you what I’ve done for the rest of the week.
Thursday started off slow, Riley and I played and enjoyed some time together in the garden. Then I had a soak in a bath, washed AND styled my hair and helped a little with dinner prep.
Today has been a busier one, Friday lunch times my dad comes round for coffee and a catch-up. Before he arrived, I was up at 10.30, nearly an hour earlier than I’ve been managing the last few weeks. Mum brought me a big trough to plant some wildflower seeds, so I got dressed and played with Riley. Then I got the trough out, lugged 3 bags of compost into in and scattered my seeds before watering. I stayed in the garden with Riley while he continued playing by himself, just enjoying being outside. Then I had a slightly longer than usual visit with dad, and now I’m sitting in the sun of a hired secure field. Riley is pretty tired, given I’ve had more energy to train and exercise him this week, so throwing balls is a sporadic. We’re just sitting, enjoying the sun in the grass, lightening to the birds and writing this little entry.
I also managed to walk nearly to the bottom of the field and back. I couldn’t make it all the way, but I was closer to the bottom than the top so I’m thrilled.
I’m sleeping better, I have the energy to eat better rather than consuming easy calories in the hopes for some energy and I just feel good.
My legs are still shit, my head is improving, and clearly my energy is more stable. I’m still not able to do a lot, by a normal persons standards I’d be pretty shit. But for me, if this remains consistent and I can reduce my crashes and flares, then CoQ10 is the best money I’ve spent since the vaccine. I’m trying not to get ahead of myself, this could just be a better few days which are like gold dust. But dare I say, I feel a little hope and for once it doesn’t feel so scary.
