Uncategorized – Page 3 – Letters From My Bed

Never end on a bad set.

I often write about the things I’m struggling with, largely because this is when I need to write the most. It’s cathartic; if I can get my thoughts out of my head and onto the notes in my phone then they appear, and feel, far less insurmountable. It’s also because, in general, each day is a struggle in one way or another. That’s the trouble with chronic illnesses and dynamic disability – if it’s not one thing it’s another, and something I could do yesterday my body won’t allow today.

However, I’m coming to write about good things. It’s no shock to say I’ve been struggling a lot lately, but the support I’ve received has been phenomenal and overwhelming. One such example of this support was from a friend and bloody lovely lady, Caroline, who listened to my whining without judgement and, as she does, she knew the exact combination that would help me in a specific area: sleep.

My sleep has been tragically awful, non-restorative and continuously disrupted by my own body. But, a conversation, a little reading and some new tools has seen me sleep through night for most nights since Monday. For reference, I haven’t had a full night sleep in months, so it’s likely not entirely surprising that I’ve been battling with my mind and my emotions so much.

As a consequence to the success of Caroline’s advice, I’ve managed to go out into town for a little shopping not once, but TWICE this week. I’m sure for most people reaching a shop is normal, you don’t need to think about it too much or plan it. But this is the first time since I had my adverse reaction that I have been able to do my Christmas shopping in person, rather than the very anticlimactic, yet convenient, online shopping. Imagine the last time you physically went Christmas shopping being 2020, and even then it was limited due to lock downs.

Today’s shopping trip was particularly successful on the whole, though some experiences were disappointing. We started with our local TK Maxx, however they have crammed so much into their shop for Christmas that I kept finding myself having to reverse out of aisles because I couldn’t reach the end due to a stack of trolleys, or just someone ignorant person not acknowledging my polite request for me to squeeze past them. Some of the aisles were so tight that I’d catch something on a shelf and knock it off – though thankfully nothing breakable was damaged.

I remembered the advice of my old training coach – never end on a bad set. So while I left TK Maxx feeling like I was an inconvenience and like I was just in everyone’s way by trying to do my own Christmas shopping, I decided I wasn’t going to end the day feeling that way.

We got back into the car and, while initially I wanted to throw in the towel and go home in my foul mood, I decided I wasn’t done. I’d seen something I really wanted to buy for someone but they didn’t have the right size, and I knew from previous experience that the TK Maxx in Chippenham’s was much bigger and better laid out. So off we went!

What a great decision this turned out to be, not only was I able to go down any aisle without fear of getting stuck, hitting people, knocking things off the shelf or worse – getting a wheel stuck on a shelf and dragging it with me, but also everyone was so damn polite and helpful.

“Sorry, would it be ok if I just quickly squeezed through?”

“Of course! I’m so sorry”

Of course their apologies weren’t necessary and more often than not neither were mine – I’m working on it! But I was made to feel welcome not just by TK Maxx and their well thought out interior, but also by the other customers.

And what a success it was, I managed to get the gift I wanted in the right size, along with some shoes, hats and a purse for me. The double bonus was Next was next door and I also managed to get myself some trousers that’ll be a bit warmer than my linen trousers. We then had a Costa and popped into M&S food next door to treat ourselves to a Cumberland pie for dinner.

I successfully turned the day around simply because I remembered: never end on a bad set.

The only unsuccessful part was that I’ve still not managed to find inspiration for something to get my mum to thank her for all she does for me. But otherwise my Christmas shopping is done and I’ve not had to order one thing online.

Many people will try and convince you that getting a mobility aid is a bad thing, that it’s restrictive, that it’s giving up, or that it’s lazy (if they’re a complete prick!). What a mobility aid actually does is give someone the ability to walk further than they can without out it, to walk with less pain or more stability. For me, using my stick or my wheelchair is freedom. It’s empowering and makes the world more accessible to me (if I go to the right TK Maxx).

Today I learned that being disabled doesn’t make me an inconvenience and that, on good days, I now have the independence to be able to do something as simple as picking up a few Christmas presents and trying on clothes in person to make sure they fit. I also learned that not everywhere will make sure their store is truly accessible, but that’s ok because there will be another store, with nicer people, that does!

A life worth fighting for.

I’m not quite sure where to start with this one, but I think it’s important so I’ll give it my best shot.

When you get sick, you assume there’s a herb or medicine that can ease the discomfort while your bodies recovers with some additional rest. If that fails, you still don’t worry because there’s a doctor available who will surely know what to do. If they don’t, then still restrain yourself from panicking, because they know the right department that can help you.

And then there’s me, and others like me. The ones that don’t make it into the leaflets or the bus stop ads with smiling faces. The ones who no one will take responsibility for, the ones who are let down time and time again, who get gaslit or their health concerns dismissed. The ones who one department will say you’re too sick for us to help and another who will say you’re not sick enough. And I’m not just talking about healthcare services here, government services as well.

My neurologist has repeatedly told me I’m fine, that I walk fine, that nothings wrong. But that also this is just a simple case of “these things happen” and it’s my body’s “natural response to pain”. Then, when I push for help from my neurosurgeon and he sends me to someone who does diagnose a genuine neurological condition, my neurologist writes “I feel I have reached the end of the road with Chloe”. The very short road of laughing at me during appointments, trying to tell me nothings wrong as if I’m supposed to just jump out of my chair and skip down the hall back to my old life. And not forgetting reporting I’m getting on successfully with medication I haven’t taken in 3 years and that I arrived in my wheelchair when I made damn sure I walked in so she couldn’t tell me I had a “normal gait” again.

Then there’s the GPs themselves. The one who told me that I’d just have to “get on with it”. This was in response to the wrong CT scan being ordered by another GP, I requested for the error to be fixed which was denied, and when I asked what the hell I was supposed to do with my failing health if they can’t order the right scan that might identify why the fuck I can’t walk like a normal person. Get on with it.

Or the GP who writes “patient came in with a walking stick?” Because the patient is disabled. “Patient discussed her post covid fatigue” Ignoring the fact the patient has a diagnosis of Chronic Fatigue syndrome. “Patient was a little tearful.” That was the clinical observation written when I called in May begging for help because I didn’t want to be here and was planning how to make that happen – in case you’re wondering, I was told that if I needed support I should call Samaritans.

I fought hard for a physio referral, I’ve had to do my own rehabilitation where it’s been denied to me. The first physio said I needed more specialised help, the specialised help said she couldn’t help me, but had a considered a commode downstairs? Not so much as an exercise sheet. For those that don’t know, I didn’t just lose the ability to walk properly, or sometimes at all, I lost all fine motor skills. Even now I struggle to cut up my food when it’s hard, like roast potatoes for instance. I couldn’t even write, but no one would help so I spent months sat in my room doing handwriting sheets, eating with chopsticks, using baoding balls and trying to knit. Even now I struggle to write a birthday card, but at least it’s legible now.

Only this year, thanks to a lovely continence nurse, I got some things installed at home to make me safer. They then did a referral to Adult Social Services because they felt I needed more than they could provide. I’d previously tried to refer myself to social services when I had bedsores that no one would help me with, they said that because I was still under neurology, it meant I hadn’t been signed off as not getting better so they couldn’t help. With fucking bedsores. So I felt hope when the OTs did the referral, but after two assessments, the answer was that because I wasn’t permanently in my wheelchair they couldn’t provide help. Always something, right?

Don’t get me started on what happened at Southmead after my surgery either, these are just the highlights that I can recall whilst writing this.

This isn’t just one failure, not just one case of slipping through the cracks. This is what I’ve been quietly fighting against for four years. A system that doesn’t want to help me, several in fact. I fight so fucking hard to get through the right door, and I’m either too sick or not sick enough. Or what I tell them doesn’t match what the last fuck wit wrote on my medical records.

In fact the only person I’ve seen that accurately records things and does what he says he will has been my Neurosurgeon. A man of few words, but they carry weight and he has no problem writing that my issues were caused or exacerbated following the Pfizer vaccine. But shouldn’t accurate records and actually helping your patient be the norm? Shouldn’t it be maximum one person that is negligent, not all but one? And I’ve seen a bloody lot of them.

Then there’s the withdrawals that no one with help me with. No support, no guidance, no matter how bad it’s impacting my mental health. Please note I haven’t even discussed the financial burden of all this either, which is significant.

All this resulted in me going to A&E this weekend and asking to be sectioned for my own safety. The reality is that my health is getting worse, sure some things have improved, but then the rest has gotten worse. And I realised I don’t know what I’m fighting for anymore. My present life is fucking awful, and with no one supporting me or trying to help me better my health, I’ll only keep getting worse. Because what the hell do I know about curing neurological conditions and various other conditions, diseases and syndromes?

So why am I fighting for a future that quite frankly I don’t like the look of? It’s certainly not the future I planned for myself, it’s not even a half life. So I reached a point of giving up and I had an emergency therapy session and was told I needed to present at A&E, that should get me some help, or at least keep me safe.

I’ve spent over 4 years fighting on my own to get through to the right door, only for it to be shut in my face time and time again. I don’t mean on my own in a sense that I haven’t had friends and family behind me the whole time, but in the sense that not one fucking doctor has been fighting with me or for me. No one seems to think that a very fit, athletic and intelligent 27 year old, who’s suddenly unable to work, socialise, exercise, do basic math or even write a fucking birthday card, is something to be concerned about.

I spent a lot of my life feeling invisible and it’s like those feelings that I worked really hard to erase in therapy are all being validated. I feel inadequate as a human being. I can’t make my own dinner, I can’t always bath myself, sometimes I can’t even brush my teeth without being sat down and supporting my arm on something. I have to decide whether to walk Riley or have lunch, or whether I can bath and see a friend in one day. But if I have an appointment, I have to keep nearly a week clear both to have the energy for it and to recover after.

I miss my life. The one where I could run down the stairs in time to get a delivery before they fuck off, or run errands on the way home from a long day at work, one where I’d walked with the dog before work and spent my lunch break squatting 120kg or bench pressing 70kg – both for reps. And then in the evening I’d head out for a few beers and a game of pool after cooking myself some dinner. I’d sleep a most peaceful and contented sleep, ready to repeat the same again tomorrow. I finally had my shit together after years of pretending to be someone else, to fit in with people I didn’t actually like, and then it all fell to shit in the space of two hours.

How can it be fair? Not just that this happened, because I think I’m far from the worst person in this world, but that even after it’s happened there isn’t anyone to help me fix it? Because I’m not terminal, no one has said I can’t get better, in fact they’ve said the opposite. But they still won’t help me achieve that.

This is quite long, so if you’ve made it this far I don’t know whether to congratulate you or send my condolences. But I’ve alluded repeatedly to how hard this journey is, I’ve spoken about how frightening my thoughts can be at times. But I don’t think I’ve ever actually sat down and written why I’m still sick, why I don’t want to keep fighting for a future that is more miserable and bleak than my current existence or just how many errors happen for me and others like me. And the sheer negligence of it all.

I’m fucking exhausted and it’s not just from the CFS. But I had to find the energy, both mental and physical, to write down just what a shitshow this journey has been and still is. I don’t know what I hope to achieve by writing this, but it felt good to write it, even if nothing ever comes of it.

This little life of mine…

I have a new car! With a hoist for my chair and knob on the steering to make things easier. I have to say, it’s an absolute dream to enjoy driving again. It’s not too difficult, or anywhere near as exhausting and painful as before. I feel very lucky to be where I am…which is currently sat at M&S charging my car.

I’m experiencing a lot of firsts since getting this car, and even before I collected. I’d never been to a car showroom, of new cars that is. I’ve never test driven a car that wasn’t from a private seller, or ever sniffed near a brand new vehicle. For those curious, like me, the new car smell really is a thing!

The start of the firsts was of course visiting and test driving the car, which was pleasantly easy and the lady who managed my order was a delight! Shout out Sara at Škoda who really did go above and beyond for me.

It wasn’t without anxiety, especially when it came to the adaptions. I’d asked the installer for a demo, or even just a video, of the strap/lifting manoeuvre for my chair as it doesn’t have handy fixtures for lifting. So I have straps and carabiners. I’ve never used a hoist or seen one in action, but what they sent me was a commercial video with clips of folk stood at the back of their cars with a controller in hand and a chair in the air. The voice over told me all about the benefits of a boot hoist and the freedom it can give me, but not actually how to operate the damn thing or how to do so safely with my chair! When I pressed further I got told to see how I got on and contact them if I had any issues.

So when I collected my car, which had my chair in as well from the installation, I was a bundle of anxiety in case I couldn’t work it out and had to drive to Bristol for them to show me. I got lucky, in that the set up for my chair is fairly simple and so far I haven’t done any damage. But I’ll be honest and say this anxiety shouldn’t have been necessary.

The first trip was to Burnham 3 days later with friends and kids. It’s a very different experience driving an electric car, and it’s not the first big car I’ve driven, but it will take a little time for everything to become “normal”.

The first charge I was full of panic. I had no idea what it would cost or how to operate all the different charge stations. Of course they all work differently, with different apps or cards, just to keep things fun! I managed it though, and felt very proud of the quick charge I did with zero issues – go me!

I’m awaiting a home charger to be installed, but it requires some other electrics to be sorted first hence the delay. But as it turns out it’s not too much of a hassle. It currently costs around the same as my Audi to run, but likely because I’m using fast chargers so I don’t have to sit in the car for ages. Once the home charger is handled then charger will become significantly cheaper and easier for me.

I’m slowly coming out of my flare that lasted nearly 8 weeks, if you couldn’t tell by the beach trip. I decided to really push the boat out on Thursday. For 4 years I’ve barely been able to go anywhere alone, certainly not if I needed my chair. But in general I’ve always required the support in case I get stuck, or my legs completely fail me. So Thursday I wanted to prove to myself that I could go out on my own. So instead of ordering some pads online, I drove to bath with my chair and took myself to boots to buy them in person. I won’t lie, I was full of anxiety, I cried, I had to do some tapping to prevent a panic attack when I was swamped by the crowds. BUT I did it, and I even managed to find TK Maxx for some pants. The biggest hurdle was finding a disabled bay in Southgate!

I also spent Friday afternoon with my Grandma which was a lovely visit and we enjoyed a good laugh together.

All in all it’s been a big week. A lot of achievements, a lot of naps and very little else beyond zoning out into silly games on my phone or reading. I’m exhausted, but today I MUST deal with washing my poor neglected hair which is long overdue. I do have a new hairdryer which significantly cuts down drying time and is less painful to use, but it’s still a chore that saps my energy.

This week I’ve a few social visits booked in the diary, but I’m also doing Reiki 1 training, courtesy of one of our lovely members at UKCVFamily. He also happens to be a dear friend.

While life is undoubtedly difficult, and I won’t pretend that I don’t have my moments of self-doubt about whether I’m cut out for all this, life is also good. For what little I can do, I am receiving a lot of joy, love and support which make this all seem bearable. The pockets of good, though fleeting and sometimes unattainable for long periods, are enough right now.

But that’s me, the cars charged and I’m off. This little lady is feeling very grateful for lots of things, and very ungrateful that she has to bath and hair wash. But that’s life, and overall mine is looking bright and that’s all I can ever wish for. Love you all 🤍

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love to all 🤍

4 years: from surviving to thriving, just a little differently than before.

Today is the anniversary of my vaccine. 4 years of my life being turned upside down hasn’t been easy, but there’s are positives that have come from this journey and there’s certainly been improvements in some areas.

For starters, I’m no longer bed bound. I require extensive amounts of rest, most days I just manage to walk Riley, but I don’t have to do that rest in bed all the time. At the start of this I was sleeping 20 out of 24 hours, only waking to take medication and eat.

During this time I’ve been allowed to find my true self, I’ve never met her before and I’m still learning. But I’m me and that’s very comfortable in comparison to the chameleon I was before.

I’ve met some incredible people, I’m learning everyday from them. I’m a better person because of them and what they teach me and what they give me. I don’t make friends easily, I’m a closed book and incredibly anxious around people I don’t know or don’t feel safe with. But the injured family I have made me feel safe immediately, which in itself is rare, but I immediately felt a connection with them beyond our shared vaccine injury. I’ve laughed, cried and made lots of inappropriate jokes with these people. Some of them know the darkest parts of my mind and they’ve continued to love me.

When I fall, like I had recently, the troops rallied round. They took over my volunteer responsibilities, they checked in, they sent flowers and called me to make sure I wasn’t alone, they gave advice which has seen me come back to myself, they’ve gifted experiences which have hugely benefited not just my health but my soul as well and they reminded me that I am loved and I have value.

UKCVFamily members and volunteers represent the very best in humanity and I’m incredibly grateful to be a part of the beautiful community created out of something so ugly.

A lot of people don’t like talking about vaccine injury and bereavement, but I know first hand just how powerful these conversations can be. Without them, I’d still be battling to want to survive this journey in isolation, believing there was no one who was experiencing what I was. Without these conversations these is no healing, there is no space for people to get the right support and the knowledge, research and resources of thousands of people on the same journey.

Of course it’s not all roses, my legs are getting worse, my mobility too, my ability to stand and do things is dismal and there are many symptoms which severely limit me even further than the above already does. But I’m content. I never thought there was a way to be happy with your body is failing you, your in constant extreme pain and you rarely get to say yes to doing the things you love or seeing the people you love. But I truly am happy with what I’ve got right now, my little life is full of glimmers and wonderful friends, family and animals. Today I got to spend most of my day speaking with several of these people, after a lovely walk with Riley who even got a chance to be off-lead in the sun. It was a good day and I’m grateful to be here to stick my middle finger up at the vaccine. It may make life much harder, but I have a track record of not letting a challenge get in my way.

So, to my friends and family at home and my friends and family at UKCVFamily, thank you. You heal me, help me, love me and never make me feel like I’m not enough, even on my worst days. I love you and I look forward to what we can do together in this next year of my journey.

4 years: from surviving to thriving, just a little differently than before.

UKCVFamily members and volunteers represent the very best in humanity and I’m incredibly grateful to be a part of the beautiful community created out of something so ugly.

It’s just water.

I wrote a journal to post here yesterday, it was largely about my 3 hour PIP assessment yesterday morning. I’ll post it later, but this one comes first as it’s so much nicer to have something good to write about.

We’re scheduled for some heavy rain here today, and I didn’t get to walk Riley yesterday. I decided to get him out at 10.45, as the rain wasn’t due to start again until 11.15. I then figured I could take him out again later when it’s dry.

Anyway, off we went. I was smart, I wore my rain coat just in case. Riley doesn’t like rain, or wet ground, he refuses to pee just like Bella used to. But the only coats here are Bella’s, and Riley has yet to be given a coat for walks, so I just hoped I’d get it right.

I do a little lap of the village which usually takes around 45-60 minutes, but I figured with the speed bumped up a little we might just be able to do most of it. Wrong. First off I bumped into a lovely chatty lady who was asking about my health and where I lived…with whom I lived, whether they worked. She stopped short of asking for my long card number and the three digits on the back though, so it was fine. When she asked how I got ill and I explained it was an adverse reaction to a Covid vaccine, she promptly said “dat nasty ting” in a lovely Jamaican accent. I don’t think I’m ever going to not have that going round my head when somebody mentions the vaccine, so I’m grateful I met this lady who made me smile this morning just for simply existing and showing me kindness and compassion.

Anyway, off we went again and Riley was being a bellend. When the speed is higher he gets anxious energy that has him leaping around like a fucking kangaroo on a leash. So I dropped the speed and decided that if we get wet then so be it. A mere 5 minutes later, as I was chastising Riley for finding the only pile of fox shit to roll in on the verge, the heavens opened. My app said the rain would initially be light, allowing for me to get home. My app lied.

It was proper rain and we were getting proper wet.

Riley thankfully continued walking, though he wasn’t particularly well behaved about it as he quite frankly did not want to be getting wet or worse yet, be expected to walk in it. I however, flipped the hood of my rain coat up.

I know it sounds silly, given what I’ve written above, but this was one of my favourite walks. It’s strange the things you come to miss about the world, but being in the rain is one of them. Usually if there’s a torrential downpour you’ll find me trying to get into the back garden as fast as I can to have the ground beneath my bare feet, while the rain washes everything that doesn’t serve me away.

Today was torrential rain, but it was rain and it felt truly lovely to once again experience being “caught out” while on a walk. Something that used to happen often for Bella and I. I just never believed, given my lack of ability to really walk much, that this would happen for me again and I didn’t know how much I’d missed that experience until today. The feel of the rain on my skin, the little panic inside, the apologising to your dog and promising them you’re rushing home as fast as he will allow. Plus a mild panic over being in my chair, though it’s fairly robust and reportedly fine in the rain, I popped a clean poo bag over the controls just in case.

I’m home, we’re dry, Riley is napping at my feet once again and I feel like I’ve had a lovely, cleansing, meditation. I highly recommend anyone reading this goes out to experience a little rain today. Remember it’s just water, and it’s really quite a wonderful thing once you realise that getting your hair wet, or smudging your make-up, really is something insignificant to worry about. Double its benefits by taking your socks off and standing barefoot, grounding. Im almost certain you’ll feel better and lighter like I do now.

Withdrawals are fantastic.

Despair. Hopelessness. Grief. Sadness. Anger. Irritation. Tired. Not feeling like I have anything left in me to keep going.

These are all emotions that I’m dealing with right now. Unfortunately, today I dealt with them all and had a breakdown. The withdrawals are so fucking hard and I’m so fucking tired. I haven’t felt this heavy in a long time and it’s sitting so heavy. It’s scary and I’m scared. I haven’t moved from the 10% reduction, I don’t dare move it until I’m stable again.

Tomorrow I’m calling the doctors to plead with them to provide me support through this. I don’t know what else I can do, and I’m not hopeful that they’ll help, but I have to try.

Everything is coming to the surface, today was a lot of anger and a deep grief for Bella. I miss her terribly all the time, but more so today.

I had a sound bath session today and I had to check out after a short while. I couldn’t switch my mind off to feel the benefit. I tried focusing on my breath and focusing on the sounds, but no matter how hard I tried my mind was more intent on giving me a recap of everything that’s pissed me off, hurt me or humiliated me in the last 12 months. Though I have to be grateful that it didn’t go back any further, the last 12 months is more than enough.

The biggest thing on my mind is that I have such a long way to go yet. I’ve been stable for some time now, intrusive thoughts were a thing of the past and I could maintain a clear mind most of the time. Of course there are times where I’ve been at capacity or felt dark after 3-4 weeks of intense flare in my symptoms. But I knew what they were, I knew they would pass and they were perfectly normal parts of this journey. This is different, it’s darker, heavier and I just don’t know when or how it will end. That’s the scary part. My spiritual and mental practices kept me safe and secure, this time they aren’t making a drop of difference.

That being said I feel much better for a damn good cry. More of a torrential rain with thunder than a cry, but it’s helped. Or I’m too washed out now, I’ll take either and hope that it’ll also grant me a restorative sleep as that’s also been lacking of late.

I’m sharing this, though I normally wouldn’t. It’s important for those I love to know that I do miss them and want to see them, but I can’t even bear to be around myself at the moment. It’s also important to share the impact of prescribed medication – when you’re told it’ll just be a little increase in pain to come off rather than potentially life threatening withdrawals, it’s definitely important to share the reality that thousands go through. I was warned that for a “rare” few, this drug caused uncomfortable side effects, but I wasn’t fairly warned by my doctors what the withdrawals would be like. I learned from others who had come off it, those who have already been through the worst of withdrawals and those that faired better. But until a few years ago I wouldn’t have even thought to look on facebook for support groups that are filled with people who can support me better than a GP or consultant. But here we are, learning from people all over the world with real life experiences.

Love you all, I’m sure I’ll feel better and more at peace soon, back to my usual antics. Until I reach that point I’m just going to keep things slow and simple to maintain as much control over the world around me, until I’m in a better place to cope with normal life things without risk of a menty b or shooting my mouth off at someone without warning.

Withdrawals are a bastard.

For a large part of my life I felt unseen. This rhetoric in my mind would constantly ask me “why don’t they see me? Why don’t they see my pain? Why don’t they see what I like and don’t like? What else do I need to do to be seen?”

The reality is that there’s nothing I can do to make others see me, and while I have felt invisible before, the truth is that I am seen. The people who really matter see me, that’s why I have such a beautiful circle around me and I consider myself incredibly lucky.

What I think was a large part of the problem, was that I didn’t see myself. I didn’t think I was allowed to take up space, I didn’t think I was entitled to tell people my likes and dislikes or that they’d hurt me. But I’ve only learned to start voicing these things about me through spending the last 5 years in therapy. I’ve never truly let people know the real me until now, and I certainly didn’t know the real me either.

How could I ever have been mad at others when the reality is that I didn’t see or value me. I’m learning a lot about this. Today for instance, I had to use my voice to advocate for my needs because I could see me and I could see that I am struggling with withdrawals from pregabalin.

It’s been quite some time since I’ve had any dark thoughts, but this morning I was hit out of the blue. If I’m honest, it felt more like a slap around the face. I naturally scolded my mind for being a bastard and took off for my walk with Riley to mull over what I should do – though I knew the appropriate actions I needed to take. As soon as I got back I emailed my therapist to book in a session and requested a bit of time off of safeguarding. I cannot safeguard others until I have safeguarded myself.

Truth be told I’m proud of myself, I saw myself and my needs. I took action before someone else gave me a nudge to – because this is what usually happens. Just last week a dear friend reminded me that I do enough, I don’t have to take on more than I can comfortably manage right now. I don’t need to be the people please I once was. It was a timely reminder and one I absolutely needed, but one I should have seen and acted on myself. So today I’m proud of myself for advocating my needs and taking the right actions, though not immediately I didn’t procrastinate significantly.

I guess this is just my reminder that sometimes, it’s not about whether other people see you because the people that matter most certainly do. It’s about seeing yourself, loving yourself and advocating for yourself in all situations. As you can see I’m not great at this all the time, certainly not with these withdrawals, but I’m a work in progress. I’m also human and I’m going to get it wrong again, but the universe will send me more opportunities to learn and get it right, like I did today.

It’s been how long?!

I haven’t written anything for sharing for some time now. In truth I’ve been struggling a little, I’m in a period where I just crave the quiet life and shutting myself away for a while. The counter to that is that I haven’t seen people as much and that I hate, but it’s just where I’m at currently.

Lots has been going on. I’ve started my taper off pregabalin, going very low and slow, using water titration. The brain fog is pretty bad and I get mentally exhausted very easily, even struggling with simple conversations. It’s also increased my head pain more and I’ve noticed that my need for pacing has become much more necessary as I burn out and crash faster. That being said, I’m ok and it’s going better than I expected, but I dropped the dose again today so we’ll see how I fare over the next few weeks.

I had nerve conduction studies on my legs, which came back negative. They told me I wasn’t there for a full assessment, I just needed a diagnosis, so they went with Functional Neurological Disorder (FND). They believe a bit of physio will see me right, which of course is tosh as I’ve been doing daily physio for several years to try and prevent further decline.

I’m tired. I’m medically fatigued from all the fighting, chasing and advocating. I need a break. I have an appointment next month for the incontinence, but otherwise I’m checking out for a while. I just can’t keep banging my head against a brick wall, expecting a positive result. I wish I had an answer to prevent my disabilities getting worse, but I’m obviously not getting them in the near future.

The truth is that for the first time in 4 years I’m actually happy. I don’t spend everyday in bed resting, and most days I’m out with Riley for a walk at 11. Most days that’s the best I can do, but I don’t then have to spend the rest of the day in bed, I’m upright and doing very simple and low energy things like a bit of a jigsaw, reading or some admin for the charity. I get to see my friends usually every 2-3 weeks and I don’t suffer significantly for it. I’ve got the most important parts of life back and right now that’s more than enough. I’m content, I’m grateful and I just can’t continue wasting energy on fighting a system that just doesn’t want to understand vaccine injuries. So I’m not going to keep torturing myself.

I hope one day there is an answer, that I find something that helps to give me some more of life back, or helps me maintain where I’m at more consistently. But I don’t think that answer lies within the NHS. I’ve been adding supplements and making dietary changes which is what’s given me the most improvements.

Last week I even made a last minute trip to Bella’s beach with Riley and Mum. I’m suffering for it still, but just 6-8 months ago I couldn’t have even considered that. I mean I did it with Bella when I knew I had to make the decision to let her go, but we weren’t there long and didn’t go far. Last week we spent hours there and then had lunch before coming home. Like I said, I really am suffering but it was worth it. I allow myself a few “silly” days like that a year, where I decide the consequences are worth it and I’m glad I did.

I have been over-doing things in general. I’ve been taking on as many tasks as possible to help the charity because it genuinely brings me joy and peace, with no additional stress. But I didn’t do it in a safe way for my health, because you can add all the positive distractions you want, normal life stuff is still there and will still need your attention eventually. Like pointless appointments! So I’m having a stricter few weeks; with very few plans, so I can get back to baseline and then build up a sensible schedule that is actually manageable for me and my health; A schedule that balances my want to focus on charity work, while ensuring I see my friends and family and deal with the other normal life stuff.

I think if I’ve learned anything over the last four years, it’s that life is about the little things. Being able to connect with friends and family, being in nature and receiving joy from the little things like sunsets, army aircraft flying low and kisses from your adorable dog. It’s taught me to slow down, slowing down allows you to actually see and appreciate these things. But I’m craving being even slower. Han said to me a few weeks ago that she thinks I need a holiday, a complete break from life and I think that’s what I’ve been trying to achieve by going MIA and sitting helping UKCVFamily whenever the opportunity arises. It’s not that I don’t want to see people or do things, it’s that I’m in need of a complete switch off and some time to just fester in my armchair.

I’m craving quiet, likely because my mind isn’t very quiet at the moment and no amount of holiday is going to switch it off unless I deal with the noise. So that’s what the next few weeks are about, dealing with the noise in my head while festering in my armchair. If I’m lucky I’ll come out the other end with a clearer head and maybe even a savings plan to get me and Riley away for a few days somewhere.

I think that’s enough waffling for me tonight, I’m exhausted despite it being a rest day so the thoughts are only more confusing to try and write. I hope you’re all well and I’m going to try to keep on top of posting here a little better. The journaling is a big part of keeping my mind and peace and I shouldn’t be neglecting it like I have. Hopefully I’ll have something useful to write in the next few days!