walking – Page 3 – Letters From My Bed

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.

Happy 60th Pappa P!

Today is my Dad’s 60th birthday and we’ve got a family dinner booked at a local restaurant.

First off, huge birthday wishes to Hamish! We’ve a lot of memories, not least restoring a TVR together and working together for many years. When work allowed we’d take longer lunch breaks and either take both TVRs for a drive or head off to a local cafe for a delicious fried breakfast. When work wasn’t so kind, we’d find ourselves working into the wee hours with a glass of wine and a take away. We’d use our business to get trade passes to most motor shows and that would be our little treat to ourselves when we needed to step away from the grind for a day.

One year we decided to go on holiday, at this point I hadn’t had a holiday since I was a kid. But we booked onto a European track day tour with our fellow TVR friends, arranged by the TVR Monster himself, Andy Race. We spent a lovely long weekend at Spa, though it was in the C5 RS6 on account of the fact that one TVR shit itself (Dads, shock!) and the other didn’t have power steering. Nevertheless it was a fantastic weekend and one I will always look back at with fond memories. Except for the first night, where memories are hazy due to too much beer.

Since getting sick we haven’t been able to do these things. I did one show at the NEC with Dad, with my stick when I could walk a little more, but it damn near killed me and I decided that I couldn’t carry on as the consequences were too much for me to cope with. Now though, now I have a wheelchair and I know for sure that Dad and I will get ourselves to another show. In fact, I know that this time it won’t just be dad and I, it’ll be Tash too now she’s also developed the petrol head bug and I wouldn’t wish it any other way. Now I’ll have company while dad spends too long at the jumble sale stands and chatting to other TVR owners, but also someone to cause a little mischief with! Mostly though, I’m just glad to be able to tell my Dad that these memories can be started again, that we haven’t lost them forever like I feared.

Dinner out is an anxious event for me, largely because of my MCAS. I’m currently finding that I’m reacting more than usual, likely because of London last week and nearly 2 weeks of migraines most days. I’ve planned as best I can, my meds are ready along with extra antihistamines. I’ve also bought DAO Food Plus, which is a supplement that can be taken 30 minutes before eating to boost levels of DAO. Diamine oxide is found in the small intestines and works to lower histamine levels in the gut, so this supplement will help make tonight’s dinner a safer event for me. I’ll still be sensible, as hard as that’s becoming, but I’d rather eat right and not risk a reaction and the days/weeks of recovery that comes with that.

Edited – I’m posting this a day late, his birthday was yesterday and I did react to my dinner despite it being a plain beef burger and chips. But that’s just the way the dice rolled.

Unfortunately, I wrote similar sentiments about our memories in my Dad’s card, which made him cry, right as his dinner was placed in front of him. Oops! But I meant it all, I know events will still be hard, my energy levels are still fragile and I’m easily overwhelmed. But I’m determined to use the chair to experience more of life again, even if it’s only a few big days a year until I reach a point of coping better. I’m done being scared to live, because I still am scared, but I am still alive and that can’t be ignored anymore. So my next task is to pick which race day to book tickets for, likely at Brands Hatch or Donnie Park where there will be plenty of TVRs and old friends to catch up with.

Happy 60th Pappa P!

Today is my Dad’s 60th birthday and we’ve got a family dinner booked at a local restaurant.

First off, huge birthday wishes to Hamish! We’ve a lot of memories, not least restoring a TVR together and working together for many years. When work allowed we’d take longer lunch breaks and either take both TVRs for a drive or head off to a local cafe for a delicious friend breakfast. When work wasn’t so kind, we’d find ourselves working into the wee hours with a glass of wine and a take away. We’d use our business to get trade passes to most motor shows and that would be our little treat to ourselves when we needed to step away from the grind for a day.

Edited – I’m posting this a day late, his birthday was yesterday and I did react to my dinner despite it being a plain beef burger and chips. But that’s just the way the dice rolled.

Unfortunately, I wrote similar sentiments about our memories in my Dad’s card, which made him cry, right as his dinner was placed in front of him. Oops! But I meant it all, I know events will still be hard, my energy levels are still fragile and I’m easily overwhelmed. But I’m determined to use the chair to experience more of life again, even if it’s only big days a few times a year until I reach a point of better coping. I’m done being scared to live, because I still am scared, but I am still alive and that can’t be ignored anymore. So my next task is to pick which Race day to book tickets for, likely at Brands Hatch or Donnie Park where there will be plenty of TVRs and old friends to catch up with.

Believing in your worth.

Throughout most of my life I have often been guilty of not believing in myself and my worth. Understandable, that leads to having quite a closed mind with little imagination. If I don’t believe in myself then how on earth can I imagine the things I’m capable of achieving?

There are things I know I’m good at. I know I’m good at helping others, sometimes to a fault or beyond the limits of my health. I’m getting better at managing those boundaries with myself, it’s not been an easy battle to quit the people pleasing mode when it’s been my default for my whole life. I’m good at listening, I’m good at compassion and kindness.

In recent years, I’ve learned that I’m quite good with writing too. I’m certain my English teachers would agree, it was never my strong point growing up. Once I found what I needed to write for, it became very easy. I’m sitting in my pyjamas, throwing a ball for Riley, all the while writing this without much thought input. Like I said, when I’ve got something to write and it’s important to me to do so it really is quite effortless most of the time.

I’m good with animals and animals are good with me. We share our gentle souls that make connecting so beautiful.

But here’s my stumbling block and I know people will read this and this “are we really having this conversation again?” See I want to continue helping people, I feel certain that I can. But what I lack is the imagination and the blind belief that what I write has meaning to others. Yet, I continue to write and while I do take the odd break, I’m always back because I know somewhere along the line it might just help someone.

This belief block is a hurdle for me because I have this fear of sharing my blogs. I know that blogging in general doesn’t get the traction it used to before the days of TikTok and Instagram reels. Where is the market for someone who is good with words but has absolutely no interest in making videos of their life and spending hours editing them? Kudos to those that do this by the way, genuinely I am in awe of your bravery and the ability to just do it. I however, do not have the mind of an entrepreneur, I just sit wishing I did instead.

I’m a tech luddite. I don’t even write on word or use my laptop. I open the notes app on my iPhone, tap away for 10-20 minutes and shove it on the blog. Job done. Nice, easy and low energy.

So where do I build the belief in myself that will help me take this little corner of the internet further? No one wants to read an essay posted alongside a random image on instagram. I love the people that do read my content, friends, family and strangers. Sometimes I’m blown away when I see 20 people have read a post. 20 people who have spent a little bit of their time reading what’s happening in my life that day or some experience that I’ve cared to share.

I guess, as I’m experiencing more days with better energy I’m trying desperately to think how I want to spend that and how I want to earn a living going forward. I know I’m a little way off being able to get a job, but I like planning and I don’t like unknown certainties. I have to look forward and think what I want my life to look like, and ultimately I know I don’t want to spend the majority of it stuck in an office doing work that doesn’t enrich my life and my soul. I want a life of meaning, I want to feel accomplished and I also have to plan a life that does allow for my limitations and unexpected flares without having the stress of explaining to a boss why I can’t come in and no I don’t know when I’ll feel better either.

Which leaves me wondering how I can lean on my strengths to make a living. Or perhaps what I could do that covers the bills and still ensures I can spend the majority of my time doing what I love – helping others. The reality is that right now I am doing what I love. I love my life, I love the slow pace, the low stress and the ability to give my health the rest and peace that it requires. But one day, there will come a point where finding the way to earn a living with my new body and new health is a necessity.

I thought about crocheting Moses baskets and selling them, even making them to order, but I don’t think my body would cope with that too well. I then thought about operating a service where people can donate their wedding dresses for others to hire, because everyone deserves to feel beautiful on their big day regardless of their budget, but then you’re relying on that actually being a desirable service that others need and the income isn’t guaranteed. Mum suggested I send some of my writing to papers or bigger blogs and online magazines. Then I thought perhaps I start writing about things that people do want to read, or even writing pieces that people have commissioned (if that’s even a thing). Perhaps I become a disability advocate, sharing not just my own stories but other people’s too.

The bottom line is I don’t know what to do and ultimately whatever I do will only ever be successful if I truly believe I can make it that way. That’s for me to work on and perhaps when the right idea comes along I won’t have the doubts that people will invest in what I can offer because I’ll just know that it’s right.

A day of beautiful people and the reality of public transport as a wheelchair user.

I’m now home, in my pyjamas, covered in potions and lotions and hot water bottles. I travelled to London to meet some members and volunteers from UKCVFamily and I got to experience just what it’s like to travel as a wheelchair user. I had both great experiences and humiliating experiences.

But first I’m going to skip to the middle of the day, where I got to meet 7 other wonderful people who share my experience of the last 4 years. I exited Stratford station and immediately felt overcome with emotion, so I took myself aside to take a moment. I knew I’d be emotional, I always am when I meet fellow injured folk, but I felt I needed a moment to be proud of the fact I’d made it and to be able to enter Starbucks without tears streaming before they even said hello.

Lorraine came and met me at the door and I finally got to embrace the woman who has personally given me so much support and love over the years. We went in and I got to see everyone’s beautiful smiling faces and give Brian a much needed and deserved hug before I marvelled at his beard. There are too many amazing things I could say about this man, The Beard, but everyone deserves a friend as loving and supportive as he is. Kay, Dominic, Ange and Jac were quick to say hello and I felt so welcome and at home among everyone. Claire joined us shortly after and once welcome hugs, tears and introductions were done we made our way up to M&S Cafe where it was significantly calmer and quieter than Starbucks.

In a way, none of these people were strangers to me. We not only share our reactions to the vaccine, but we’ve spent years sharing our highs and lows with each other, holding each other up when needed and cheering each other on for all the wins too. Today was no different as we got to share our stories in greater detail, laugh like we’d been friends for decades and even sniff and share a nifty tub of CBD cream. There was no embarrassment or judgement when we shared the hardest parts of our situations, just deep understanding and compassion. Most got sandwiches and drinks, while Kay and I opted for full cooked dinners and the time just seemed to disappear. In fact I was very disappointed to have to leave, I could have stayed there for hours more and probably wouldn’t have noticed how much time had passed.

With a promise to arrange a Wiltshire meet up with Kay, I said my farewells and wheeled myself off to tackle the journey home. At this point I really was on cloud 9. I was so fucking proud of myself and what I’d achieved, not just in making it to London, but in doing this huge journey alone as my first outing with my chair. To finally meet the people who have saved me time and time again and who I truly love and cherish so much.

But wait…where the fuck is my purse?!

Yes, dumb dumb here couldn’t find her purse anywhere once she got to the station. I looked everywhere and ended up calling Lorraine to see if it was on the table, and as she answered I suddenly found it in another pocket. I’d bought a new jacket for the occasion and had already forgotten it had four pockets rather than two. Panic over, until I missed my tube.

I got through the station gates and down the lift to the subway proper, which is about where all fell to shit. I don’t ever use public transport, and can count on one hand how many times I’ve ever used the tubes, and only ever with someone else who knows how they work. I knew I needed the Elizabeth line, but I didn’t know which platform of the two I needed. I’d got into the tunnel, hoping to ask a member of staff to direct me, but what I was faced with was hundreds of people barreling towards me in all directions and I got stuck. I said excuse me, I repeatedly said excuse me but not one person acknowledged my existence. I couldn’t turn back, I couldn’t go forward, and I’m not ashamed to admit I started to panic. I very carefully turned on the spot and very carefully and slowly tried to make my way back to the escalators to find a member of staff or a sign. SOMETHING. I eventually found a member of staff who honestly made me feel like I was interrupting his very important schedule of standing against the wall, likely ready to help people who needed it but hoping no one did. Eventually I got him to direct me to the lift I needed, I just had to face the tunnel again.

So, big girls pants on and off I went. But now, somehow, it was even busier and I was even more invisible. I slowly moved forward until I found that I couldn’t move at all. People were rushing in all directions, cutting right into me and my chair, giving me absolutely no space to edge forward even more. And the lift I needed was down and on the right, meaning I had to cross through the traffic coming the other way. At this point I was having a full blown panic attack. I was overwhelmed, overstimulated, out of my depth and entirely invisible to every single person around me.

Suddenly from behind I hear “OI, get out of her way” and then there was a man beside me, lit cigarette in hand, asking if I was ok. I’m ashamed to admit that I would initially have judged him for finding him intimidating, yet here he was going out of his way to make me feel safe and seen. Still in a panic, I could start to see people listening to him. He was like a lolly pop man with the attitude and ability to clear a path in the most ignorant of people like a celebrity body guard. He parted the sea of people often with a “no I said fucking stop and let this lady through! Come on love, you go. NO, I said NOT you!” He checked to make sure I knew where I was going next once I got to the lift and carried on with his own journey like he hadn’t just saved my life. At least that’s what it felt like.

It felt like I’d be stuck in that tunnel, unable to move until the wee small hours when the bulk of the ignorant were tucked up at home or sipping cocktails at one of the thousands of bars in the city.

I got to the platform and the final tube that would get me to my train on time was there waiting. I found a member of staff and quickly asked her to help me get on. She told me to go to her colleague with the ramp two carts down and he’d get me on. I bumped up the speed and raced down the platform, arriving at her colleague just as the doors started to close. “But wait, she said you’d help me get on the tube!” “Sorry love, you’re late”.

He got me on the next tube and told me someone would be waiting to get me off and they’d get me to my 14.35 train at Paddington. I got off and as I found with my journey to Stratford, what they actually do is take you to the lifts and fuck off. In fact on the way, the GWR staff handed me over to the TFL staff to take me to the train (as I’d booked) and they stood there and argued the toss about who was going to take me, one of them even saying “can’t we just radio someone else to do it?”

So, flustered, confused and sweaty, I tried to remember where to go. He told me it was Platform 1 I needed, and thankfully Paddington is much more civilised and I felt I could breathe enough to ask a member of public to direct me.

I raced onto the platform and to the station office to be told, “the train leaves in 2 minutes on platform 10, you’re not making that one love.” FFFUUUCCKKK. He was very friendly and chill about it, explaining he would book me on the next train and there would be no problem rearranging my Passenger Assistance. “Great, when does it leave?” “4pm.” I asked whether there was one sooner, “surely that can’t be the next train?” Nope, he could book me onto another that would leave at 3, but would required a change over at bath. Fantastic, more fucking train hopping. Did I mention I hate public transport? Or most things containing the name public.

Anyway, I’m home and my train landed in Westbury just after 5pm – and hour later than planned. I cannot fault the GWR staff or service. My journey to Paddington was actually a breath of fresh air, the wheelchair parking was in first class and they still insisted I have complementary hot chocolate and biscuits. They were patient, friendly and not once was I made to feel like an inconvenience. In fact they all raved about the wheels on my chair, checked in with me mid journey and offered encouragement when I didn’t quite get my steering right and knocked things. TFL staff could really learn a valuable lesson from them who left me feeling humiliated, incompetent and unintelligent. But worse still one never felt more invisible.

I initially wondered why I didn’t see another wheelchair user on the tubes, but I now understand why. Perhaps it was coincidence, or perhaps it’s because everyone from the staff to the fellow passengers just see you as an inconvenient obstacle, a burden on their day.

I didn’t sleep well last night, I was up from 3 am. Witching hour as many of us injured call it. I woke with limited energy, but the stress from my journey home used more body battery than I used from the moment I woke up to the moment I left my friends in M&S.

Now I’m home and resting, trying my best to reflect only on the best parts of my day. But I wanted to share it all here, because travelling as a disabled person is hard. But travelling as a wheelchair user can be both freeing, and degrading all in one.

Wagons aren’t rolling.

I’ve hit a wee problem with my wheelchair. The car I use cannot have a boot hoist fitted due to the long sloping boot lid.

So I’m not sure what to do. My PIP review has been extended as they’re so backed up, it was due February 11th and has been extended for a year. As we’re past that date I can’t get a car lease via the Motability scheme with a boot hoist, and if I could it would mean losing £301 a month roughly for the lease payments. I don’t know that I can afford that, and going through financial stuff is my biggest source of stress and anxiety after years of being in debt.

I don’t know if a ramp would work, the chair weighs 37.4kg. If it works it would still mean some manual handling to shift the chair to sit horizontally in the boot which I don’t think I can do. The car isn’t worth a whole lot but it’s mechanically sound, I don’t like the idea of selling it for peanuts knowing I couldn’t get a car in as good condition mechanically for the money I’d get from selling. That would also leave me trying to find up to £3000 for a boot hoist to be fitted to said new vehicle, and whatever work would be needed to make sure it was in a safe condition.

Motability seems like the sensible way to go, but it could be over a year before my PIP review is complete. This leaves me a little up shit creek until then, and only if I found I could afford to lose the mobility component of my PIP. I’d still have to sell my car to cover the cost of the required advanced payment.

Honestly, when I see people rant on social media about how easy people on benefits have it I don’t think they really understand the issues we face daily. I couldn’t get help to improve or prevent my physical disabilities, my doctor thought a chair was a great idea but didn’t tell me about the wheelchair assessment scheme which could have helped with funding. I’ve had to fundraise so much, and now I have a loan repayment plan in place with my mum to cover part of the cost of the chair. I swore I’d never enter into debt again, but the torture of being unable to do anything was the deciding factor.

It’s never quite as simple as it may seem. The support should be there, the treatment options and testing should be there, but they aren’t. There is a whole community of us who are just left to muddle on as best we can, hence some like me have turned to fundraising to try and improve their health or living situations. But that conversation is for another blog at another time.

If anyone has any bright ideas of the best route forward from here I’d welcome the suggestions!

Health and hope.

Friday was a big day. The wheelchair was very late being delivered, which meant I didn’t get to see Laura, Kalie and Amy and meant that I had a little stress meltdown. I don’t do well with plan changes or unexpected issues that mess with my scheduled plans. I build myself up for plans, I prepare, mentally and physically, everything is organised so my anxiety is chill and it quickly unravelled.

Nevertheless I now have a wheelchair! Seeing it again in person, I was reminded just how bloody big this thing is. That was the intention, the chair is specifically to allow me complete freedom in nature for long walks and adventures. While knowing it can get me round most shops, that wasn’t the key focus when choosing a chair. So we’ve got to work out some storage as it’s a bit of a beast and we don’t have an enormous house. I can’t get it out the house myself, we don’t have a ramp and aren’t sure if a ramp would work. I also need to look at getting a boot hoist on Motability so I can get it in and out the car myself.

Anyway…

I took it for a quick walk yesterday morning with mum and Riley and bawled my eyes out. I was finally experiencing the feeling of a brisk walk, I could feel myself moving through the atmosphere. I felt so free and alive again. Riley’s a way off long walks but I did manage a little bit with me holding the lead and him trotting alongside me. He was completely unbothered by the chair so I have high hopes for the future.

Getting the chair now also meant I could spend Friday having help working out public transport. There is a little UKCVFamily meet up in London on the 27th and I couldn’t attend as it would be too much physically. Now I have a chair I just knew I had to find a way to meet everyone, which meant public transport. I HATE public transport. It’s not because it’s dirty or anything like that, I get anxiety and sensory overload, I also feel the energy of everyone around me, which means that public settings are draining for me. I also get confused with working out trains etc, especially these days where my cognitive decline makes working out anything new a challenge. But the members were on hand to support me and I’ve booked trains and tubes from Westbury to Stratford, along with booking passenger assistance. This means someone will meet me, loads me onto the train with a ramp and take me to my “seat”, and vice versa for disembarking.

As long as I don’t think about the journey, I’m very excited for Thursday.

This feels like a big year for me, I’ve really come into it as a new person with a different mindset. I’m in my healing headspace and it feels bright and full of hope here.

My goals include being out more, reducing the use of pharmaceutical medications and focusing on natural healing. I’ve made great leaps with my energy levels and it’s come from nothing but avoiding low histamine diet to keep the MCAS at bay, watermelon and a newish supplement regime. No shit, nothing that causes additional side effects and nothing that I can’t bloody pronounce. All this has also resulted in a decrease in my inflammation and allowing my implant to work more efficiently.

I’m not healed. I’m coming up to 4 years post vaccine and this has been the first sign of improvement. My physical issues aren’t improving, my incontinence is getting worse despite my best efforts with endless pelvic floor exercises and as I mentioned my cognitive issues aren’t improving, in fact in some areas they are declining. So I’ve increased my brain training exercises, I’ll keep assessing supplements and if they work I’ll keep them. I hope to work with a kinesiologist this year, but initially I’d like to work on getting rid of the horrendous drugs that are doing more harm than good and making the improvements I can myself.

I don’t know what the point of writing all this was, I guess one some level it’s for accountability, but I felt the urge to write and so I did. I still write journals how I always do, I open the notes app and just type without much thought until I can’t think of the next word. It’s a brain dump and it’s also really refreshing to share my mindset with others. I saw Hannah this week and she told me I was glowing with energy and looked really good, the best part was that I actually felt really good. That afternoon my head pain was super high and I’ve been a bit off balance for the last 4 days, but I’m full of hope and hope can take you really far if you let it. So 2025 is the year of trusting my gut, and I truly hope that by doing that it will allow me to better help others because that really is what I want to do with this whole experience.

I’ll add that I think I know why the last few days have been off balance, aside from me foolishly trying to use all the energy I’ve been gifted; grief. I deeply miss my darling Bella and I’ve been feeling this week as much as I did the week after I said goodbye. Riley is here, making me laugh and keeping me entertained and is wonderful company, but that doesn’t stop me mourning the loss of my first soul-dog. This increase in energy is wonderful and it’s filling my mind with big dreams and a wish list of places to visit, but I do wish Bella was here to share this with me. Of course I know that the Bella she was at the end wouldn’t have enjoyed any of this, but I wish she could see the Chloe I am today, the Chloe who has hope and a smile for what the future could hold.

As usual I haven’t edited of proofread this, so my deepest apologies for all errors and I hope you’ve had a bright weekend with those you love!

A full and exciting day.

I’ve got a very big day ahead of me, so it’s lucky I’ve woken with brilliant energy levels. Yesterday I wasn’t so lucky and it was a forced day of rest which seems to have done the trick.

First order of business is Riley’s vet visit at 10am for his second lot of vaccinations, weight check and a check over of how his skin is healing. Following this it will be a big petshop shop as we’re running on treats which are absolutely essential.

This afternoon I’m seeing Laura, Kalie and Amy. I cannot wait! Because of the inquiry and getting Riley I haven’t seen my friends since the beginning of January, so I’m loving finally getting to see everyone on the days mums working at home to cover Riley. Tuesday I got to spend time with Han and Arlie, so I’ve no doubt my heart is going to feel so full by the end of today.

This evening I’m co-hosting a UKCVFamily zoom social. We held more of these during the Inquiry to give members a place to decompress at the end of the day, but have continued with 3 a week since as so many find them helpful and comforting. The welfare of members is so important, and I’m looking forward to this evening as well because I love seeing everyone.

But, before both of those social interactions something huge is happening. I’m getting a delivery with 4 wheels. The day has finally come that I get my wheelchair!!

The fundraiser has done better than I expected and I’ve added what I’ve managed to squirrel away myself. Mum has given me an interest loan to cover the deficit. The loan was offered and agreed on last year, and I’m aware just how lucky I am to be in this position. It’s a worthwhile opportunity that I can have paid off within a year so I’m not too concerned. I know I wouldn’t be here at all if it was for every donor and every person who shared my fundraiser, so an enormous thank you goes to all of you. Your actions and generosity are the sole reason this lady will finally have back some independence and freedom at last.

To say today is a big and busy day would be an understatement, but I’m very excited. I’m also very anxious and I have a knot in my stomach, but I know that this aid is going to allow me to experience more of life. So I will continue while ignoring the negative voices in my head and the internalised shame at even needing this, because it’s not my fault and it’s really not a choice. For now, it can bring me to great things in the hopes that one day I may not need it.

The vets are done, so now it’s the wait for the chair delivery. It was a great appointment and Riley is officially NOT underweight! I couldn’t be happier, and his ideal weight is actually the same as Bella’s was, where we were all expecting him to be a 30kg+ dog. Now I have to break the news to him that his food is being reduced!