Tag: disability advocate

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. 

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 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.

An afternoon with Bella.

Today I found it in my heart to finally try and make progress on my last paint by numbers of Bella. This was custom ordered from a photo I took during a winter sunset on Bella’s first ever beach trip, over 11 years ago.

I started doing these about 8 months after the V when I needed creativity and exercises for my hands when I lost fine motor skills. This was by far the hardest one I ordered, with so many tiny sections and 48 different colours. My tremors became too bad to continue and I haven’t touched it for at least a year. Then I found I couldn’t face it after losing Bella, even though my tremors have reduced.


Today I found I really struggled to hold the paint brush without pain and a weak grip, which made control very hard. The same way I can hold my cutlery but I struggle to cut tough or crispy food. Instead of admitting defeat I grabbed a bigger brush with a wider grip to hold and focused on the large black area across the bottom. Then I sat back and cried, with both grief and pride.

V injury is messy and I can sometimes forget to cheer for myself over the little wins. Today I’m proud of myself and that I found a way around my limitations to spend a bit of time with Bella again.

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.