Month: August 2025

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 🤍