Month: March 2025

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. 

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.