Tag: wheelchair

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.

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. 

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! 

Is your neighbourhood accessible?

Once again I have neglected to share any journals, but this time I’m not keeping secrets – I actually haven’t been writing. 

I’ve been spending all my valuable spoons on trying to make it out for a daily walk with Riley. Then, because I seem to be fighting my bodies deepest needs, I’ve been doing something else like washing up, little food shops or a bit of cleaning and some safeguarding admin. I am bloody exhausted and feeling like shite every day, but I can’t seem to be able to just rest. 

BUT our walks have mostly been successful, though Riley is still reactive and scared of dogs and he still tries to pull ahead on the lead. But I’m determined that I’ll get there, for now I’m just grateful that I can actually walk him at all. We go for about an hour, each morning, usually in the field.

I’m learning a lot about the issues wheelchair and pushchair users face each day. Starting with the crappy pavements, the dipped curbs that aren’t really dipped and bloody wheelie bins blocking the pavements all the time. Then there’s the entrance to the field, there are MANY, but only one allows for pushchairs and wheelchairs. This isn’t by design, people keep breaking down part of the wire fence and so if I get off and carefully push my chair over it, I’m then in the field. Getting out is much harder to push the chair, but I can just about manage it….until some dopey git parks their car right up to this exit, then leaving me with absolutely no room to get out. This isn’t just an inconvenience, I’m physically trapped in the field until they return and fuck off. And vice versa, if I arrive to a car there, parked too close, I then can’t get into the field. 

This happened yesterday, so I decided to take Riley for his first ever road walk. What I discovered was actually there is a lot of issues with pavements and curbs, which puts wheelchair users into the very dangerous position of having to go in the road to find the next dipped curb when trying to cross the road in a little estate. The kind of off shoot roads. Does that make sense? Like you have the main road through the estate and the little offshoots, and I try to cross the offshoots, following the main road, but one side will have a dipped curb and the other side won’t. So then I have to make sure it’s clear, as far as I can see, and enter the main road to get to the next dipped curb which is usually for someone’s drive way. 

It’s the little things that really get in the way though. If someone’s car over hangs the pavement from their drive, then one side of my chair ends up off the curb. But I can’t just turn my chair slightly to remount the pavement, because the curbs aren’t full dropped. No, I have to then do a fucking circle in the middle of the road to then mount the curb head on. And wheelie bins cause the same problem. 

Then there’s the people who have bushes lining their drive, if they’re not trimmed properly, or worse – just left to grow wild – then they take up too much of the pavement for me and Riley to pass. Or even just me to pass. So once again, into the road I have to go, around the parked cars, until I find the next dropped curb. 

It’s a hell of a learning experience, and I have to admit that much of my complaints are things I’d have never considered prior to being disabled. I don’t know any wheelchair users personally, so I never knew they were problems. I know I have previously parked with my car sticking out the drive way, and put the bins on the pavement so they don’t block the driveway. But in doing so, I prevent people using mobility aids and pushchairs from safely navigating the village. 

It’s a very eye opening experience, but what I have learned is that the people in my village are wonderful and lovely. They stop to talk, often not even mentioning the chair or my health, and others say how wonderful it is to not just see me out and about but to see me truly smiling again when I am. 

I hope I can work out what to do with these experiences and knowledge. For now, I go out armed with little notes to pop on dustbins, polite ones I might add, just to let people know that it prevents others being able to safely use the pavements. It’s not much, and I never thought I’d be the sort of person to put notes to neighbours, but so far I’ve had no complaints and I’m seeing less bins on pavements and less bins being left out for days after collections. 

When I feel like I have the energy to do so, I think my next battle will be with the council. Not having safe crossing points and having pavements so damn broken that I feel like I’m on a rollercoaster that might tip my chair, it’s a problem and I know I’m not the only one in my village facing it. There is a chap on my street, whose carers take him for a walk in his chair daily. But whenever I see them, they’re pushing him in the middle of the road because the pavements are just not wheelchair friendly. They’re too messed up, too blocked and for someone manually pushing a chair I can imagine they’re hard bloody work. 

However, I currently have limited energy and my next real goal is to remember to charge my chair when I get back from a walk. Today I had to make a hasty retreat hone when it started telling me, every minute, that the battery was low. Oops! 

As a quick update, seeing as we’re all here, there’s very little to say. My energy is low, I have a constant pressure in my head that’s driving me crazy and my body is craving something and I have no idea how to figure out what. I’m guessing it’s likely something that’s missing from my diet with this low histamine rubbish, perhaps red meat. So we’re having steak tomorrow to find out. My inflammation is quite high, which is causing my Hemicrania to be worse and my nerve pain to be a little sharper when it kicks in. My sole focus is on walking Riley and looking after myself, and I don’t feel like I’m sufficiently looking after myself given how I feel. The fatigue is also likely as a result of the walks, being up and about causing adrenaline, which inevitably means a crash after it ebbs away. My POTS is less manageable too with the hotter weather and I keep having periods of lower ox sats which results in excessive yawning. But as usual, I put all these things to the back burner as a case of “just another thing” to save the stress and hassle of going to see the doctors to get absolutely nowhere. So I’ll keep focusing on trying to find what my body needs, getting out each day for a freeing walk in the breeze with Riley and trying to rest a little better than I am!

A day to cherish with friends.

I have been writing, I’ve just chosen, for various reasons, not to share them. Some were raw emotions from UKCVFamily losing a member, which is hard hitting every single time. Others were a bit too personal and the rest was gibberish of some sort. 

However, I’m sharing this one! Yesterday was a big day out with Laura, Kalie and Dan to have lunch in Bristol to celebrate Kalie’s birthday early.  Within hours of the day being arrange I received an email confirming my request for a reprogramming session on my implant had been granted but was the same day. 

These amazing friends of mine immediately suggested they come with me rather than us driving separately, even though this would mean a longer day for them. And boy, oh boy am I glad to have had my lucky charms there!

Having support meant I could use my chair, which was fab as yesterday I was on energy rations, rather than staggering and stumbling through the hospital. I had a thorough session with the tech who did lots of tweaking to my device and then he called my surgeon in at the end. 

He noted the chair being new, but that I was looking much better than when we’d last met. I confirmed both were correct but that my legs weren’t improving along with the energy levels and the head pains. We discussed and he asserted I needed tests, which I’d assured him I really had been trying for a long time to get. He suggested my neurologist, so I told him what a disaster that avenue was. He stated that I just needed a diagnosis, to which I cheered “finally someone that’s speaking my language!” We chatted more and I made clear that I’m ok if this is the best I ever am, I just want a diagnosis so I can prevent further deterioration, including with the incontinence which we had an awkward discussion over. He asked how the “waterworks” were and I simply stated they were “wet”. *face palms* But we both agreed that together it was all “a problem” that could have implications on my implant if I do have nerve damage as a result of the vaccine.

The discussion ended with him asking if I’d had a nerve conduction study, I told him that’s what I was chasing for. To which he simply replied “that’s fine, we’ll get you into the neurophysiology unit here for assessments and testing to find out what’s going on, plus more scans if necessary. Are you ok with that plan?” “Um, shit, that would be amazing. Thank you!”  He said it like it was so problem, not even the slightest bit of bother. So why oh why has it been so hard for anyone else to actually fucking help in the last few years?!

I think the shock factor of the chair played its part – a true visualisation that things really are getting worse and I’m not milking it because I’m perfectly happy to state where I’m making improvements too. And of course my three lucky charms who patiently waited the whole HOUR of my appointment. For reference these usually take around 20 minutes. 

And then it was off to lunch, once we’d armed ourselves with sweet and chocolatey drinks from Costa at the exit. Again I stuck with the chair – I usually can’t do anything but my reprogramming session, so taking the physical out of the equation made yesterday much more manageable and I’m lucky that those around me make me feel perfectly normal in my chair, as if I’m just walking beside them like I normally would. 

We had a lovely ‘walk’ from the car park to Za Za Bazaar, in the lovely sunshine and through the water fountains, stopping to get a quick photo of me in my motor to show you all. The chair actually came in handy for the restaurant with the up and downs to the buffets, because I wasn’t just going to eat one dish. I aimed to mostly be sensible avoiding obvious MCAS triggers, but I was also armed with antihistamines and there to have a good time. 

The food was bloody divine and I know for certain I’ll be dragging everyone back for my birthday. But most of all I just had the most wonderful day, full of love and laughter with my incredible friends. We really did laugh a lot, we end up talking about the most random topics and it flows so easily in their company. 

I don’t know how I got so lucky in life to have the friends that I do. They don’t mind my unreliability with my health, or with Riley not able to be left alone currently, they don’t make me feel disabled or different. It’s so normal, I feel so normal and that’s the greatest gift they could ever give me. Yesterday was a bloody amazing day from start to finish and I’m already looking forward to planning the next one!

A difficult day for all.

Riley had his first training session yesterday which went really well. Within minute Steve (the trainer) had Riley walking with a loose lead and looking to him for direction. Riley, good as ever, then repeated this with me and it was amazing! He then did some longline work, and he was super for us both again. 

The session failed at the end when Riley reacted to a little dog on the other side of the field, showing absolute fear while also trying to pull in that direction. It would seem his role of protector from his previous home is still strong, even though that protection came with putting himself at risk…creating the fear. 

Today I took Riley for a walk with my wheelchair to get started on our homework of running these drills and getting him working towards this being his automatic behaviour on a lead. He wasn’t great walking to the field, though he was great when running these drills in the driveway with the chair to make sure he was safe and comfortable. 

We got to the field to see it was completely empty which was exactly what I’d hoped for. But within 5 minutes there were dogs coming in from every angle. All bigger dogs I should add, no little ones today. But that didn’t stop Riley from reacting the same way he did yesterday, but with so many dogs he got himself (and me) entirely overwhelmed. He was swinging off his lead in all directions, crying out, while also shaking. An older man with a large black lab had watched us while walking round the field, watched Riley panicking, yet decided to turn and walk up behind us. His dog was off the lead and was just gently ambling, but in our direction. As soon as I saw he was following us I rode us into the middle of the field and yet this dick still let his dog continue towards us. At this point Riley was on my lap quivering. I, not very politely, asked “why aren’t you calling your dog back?! Does this look like a safe situation?!” He looked at me as if to say “what’s the problem?” Wisely he didn’t voice it or I’d have been only too keen to point out that my terrified large dog has climbed on my disabled fucked legs to escape your dog! 

I sat in the middle of that field and I cried, full body shaking sobs, while Riley continued to cry and strain on his lead. I dried up my face and tried to guide us towards the exit, only to see more dogs arriving. I sat there for 20 minutes moving back and forward before I gave in and called my mum. She was in the office, but I couldn’t see another option. I asked her to come to the field when she finished to come and get us home, instead she left work immediately and was parking in my eye-line in under 10 minutes. 

I raced to the exit as fast as I could without risking running over Riley’s quick feet and she loaded Riley into the car – after I’d burst into tears again when she came to meet us. I rode home to meet her and she headed off to work to collect her things and finish the task that she’d abandoned to save us. 

I don’t know what it was that broke me today, whether it was seeing my dog in such a state of terror, me feeling like a failure, me feeling like there was nothing I could do from my chair or frustration at the old man and his dog. Or maybe it was a combination of everything. 

I immediately got in touch with his trainer who is being an absolute hero by coming over tomorrow morning to walk Riley with both of his German shepherds, so that Riley can learn to feel safe around other dogs and for both mum and I to learn how to better manage him in these moments of fear so we can get past his reactivity.

I don’t know what the answer is, but I do know that this situation requires someone qualified, which right now I am not. I am a different person, mentally and physically, to the one who trained Bella and taught her not to be reactive when on walks all those years ago. I don’t walk with the same confidence I once had and I certainly don’t walk at a normal pace either. It’s also a whole different ball game when you’re confined to a chair, but today that was the only option as my legs are buggered from yesterday’s training session. 

I’m gutted it went like this. I really do feel like I failed Riley today. I tried to take charge and it just wasn’t enough to make him feel safe. And there’s absolutely nothing I can do about ignorant dog owners other than tell them to do something because they’re too blind to see that they are a problem in the moment. It doesn’t matter if the dog is friendly, it’s common courtesy when you see a dog on the lead to bring yours in, let alone when that dog is having a panic attack and his owner is well on her way to having her own too. 

But I’m going to head to bed, tomorrow is a new day and it’ll be a new walk with a can-do attitude. Even if it doesn’t go exactly right, I’m fairly confident it won’t be as bad as today. I’m also going to do something I didn’t think I could, I’m going to try Bella’s old lead to alleviate some of the pressure on his neck should he pull or have another meltdown. If he responds then I’ll get and order one for him, but hopefully I’ll find the strength to use Bella’s just for one walk.