April 2026 – Letters From My Bed

Two for two.

Today was another appointment that went well. It usually does at my reprogramming, they’re stress free and the staff are a good laugh.

I was able to discuss yesterday’s appointment with my neurosurgeons nurse practitioner, along with the issue that widespread inflammation is causing me. Especially in relation to my Hemicrania and occipital neuralgia, which is to say it becomes excruciating when I have high inflammation. Along with my head, it causes nerve pain in my hands and feet especially.

With my head on top, it’s truly unbearable and usually arrives around evening time. Currently the only thing I can do is apply volterol, but I have to limit how much of this I can use. Despite this, the high inflammation is getting worse, happening upto 3-4 nights a week.

However, the NP was fantastic and is writing to my GP to push them to actually investigate this rather than passing it off as an another complex symptom they don’t know what to do with. We’ve ruled out MCAS as the cause, so we need them to look for the reason this is happening and getting less manageable. So to know that she’s going to help push my doctor to investigate this properly is reassuring.

Overall, while the lead up to this week was daunting, I’m really happy with the outcomes. It feels like I’ve made the most progress with these issues than I have in the last 5 years. At least in terms of the NHS and getting some support. I do a lot myself as I’ve previously discussed, but I am limited in my knowledge of what my body is doing and why it’s so challenging to live with the body I have now.

There’s only so many supplements I can add in the hopes they fix the issues I’m dealing with. They help to an extent, but my legs and inflammation are beyond anything I’ve tried to help.

Now I’ll be resting for the foreseeable future, with a little sigh of relief that this week I was finally seen, heard and most of all, believed.

Light at the end of the tunnel.

I just came to do a write up on today’s appointment with a neurologist, who specialises in functional neurology. Or dysfunctional.

Arguably this may have been the best appointment I’ve had in the last 5 years, aside from actually explaining why my body is misfiring all over, she’s actually doing referrals to help me manage it all more effectively.

Something happened which initially triggered the symptoms I have. Now I’m stuck in a cycle where the symptoms have become the triggers, like how when I’ve done more than I should have (sometimes just washing up), it then triggers internal vibrations and tremors. Or pain, inflammation and neuropathy.

She believes my main issues are chronic fatigue syndrome, dysautonomia and FND (Functional Neurological Disorder). These cover everything, including tremors, POTS, light sensitivity, cognitive dysfunction, temperature regulation issues, sensory issues. The list really does go on and the problem is that I’ve got a LOT of it. She pointed out how every key symptom of ME I have, then add in dysautonomia and FND issues and it’s the world’s shittiest cocktail.

She explained how the infrastructure in the NHS limits what help is available, despite how much she wants to help me. That being said, she’s doing a lot. First step is for me to do research using websites, apps and podcasts/audiobooks she’s sent me. These will give me a better understanding of how it all works together, the idea being that the more I understand how my body works, the better I can listen to my body and try to reduce triggers. She’s also getting me on the list for the FND Education course to help with this too.

The idea around “use it or lose it” is true, but it has to be using it while trying to avoid triggering more symptoms to kick off. So she’s referring me for neuro-physiotherapy to help build better connections between my brain and body, and maybe even see some improvement. But at least better management. This may also help bring my body to a place where I could consider a manual wheelchair in some situations, to bring in more movement. She’s happy with how/when I use my electric wheelchair, but she doesn’t think my body could currently cope with the exertion of using a manual chair.

She’s going to ask my GP to finally refer me to a chronic fatigue clinic. She can’t do this referral, given it would come from a service which technically covers ME/CFS it would likely be refused. So asking my GP to do it should give me a chance of getting into this service to get a management plan for the CFS.

She’s happy with the therapy I’ve done with Lee, and that I’m continuing with a new therapist (I still miss Lee!). So she isn’t going to do a MH referral for CBT, for which I’m grateful. If you’ve been here since the start, you’ll know CBT put me in a very dangerous place before I found Lee.

I also have an app for tracking energy and emotions, including identifying where in the body I feel this emotion. I do a lot of energy work, and clearing emotions, so I think this will help strengthen these practices a lot.

Needless to say, I’m fucking exhausted. It was in an old building at Southmead, where the car park is at the top of a hill. My car was parked higher than the roof of the building I was in. My legs are wrecked, I’m home with some tremors and internal vibrations and I’m totally empty. But I do think this appointment was worth it.

There’s only so much I can do myself to help manage symptoms, but being disabled with absolutely no support, physio or occupational therapy is hard work. It’s certainly not something I’m going to have the knowledge on how to properly manage or even fix. So to finally have someone who’s referring me for help with this feels like a huge success, along with understanding why it’s all happening in the first place.

And bonus points because she highlighted that it all started after my vaccine, including the Hemicrania and occipital neuralgia. I don’t raise this in appointments now, but she’d read my records and made the observation herself which was great.

Now I’m switching off; tomorrow I have to be in Southmead for reprogramming at 9:20 am, so I’m going to need all the rest I can get to be able to drive safely there and back!

Rest, repeat.

CoQ10 is not the answer to everything, but I do feel a little brighter in my suffering. If that’s a thing.

The 3 days bliss I had were fantastic, but I’ve been paying the price since. I haven’t seen anyone, and my only adventure out was to take my chair to Swindon for its service last Tuesday and pick it up on Thursday. Outside of this, I’ve been back to bed and chair rotting.

It seems to have worked, I am starting to feel better today. I have therapy shortly, and only have plans on Wednesday and Friday this week. It’ll be a few hour with friends on each day, which I really hope doesn’t cause the level of rest I’ve needed the past week or so. Even so, it’s going be good to see people and escape the house for a little bit.

Edited to add: Wednesday was a day with my Goddaughter and her parents. Nothing crazy, we went to a local lake/woodland for a walk which was exactly what I needed. The peace and healing of nature, with the joy of sharing it with loved ones. I even got to limbo a gate in my chair like the big kid I am!

Next week I’m in Southmead on Tuesday AND Wednesday. Both early appointments which will see me leaving between 8-8.30 which is long before my “functioning” time. But it’s necessary. Tuesday I see the functional neurologist regarding the FND, the appointment everyone hopes will bring in the help and support I’ve needed for nearly 5 years.

Wednesday is to see the reprogramming team and my neurosurgeon. Truthfully, I don’t think the programme is the issue. I’ve had issues with inflammation since the vaccine, and it’s only getting worse, despite the reduction in histamine foods. I don’t think it’s an MCAS issue, When my inflammation is up, it’s like it’s pressing on the nerves in my head and causing truly unbearable pain that nothing I do helps. That’s not an issue with the implant, but I honestly don’t know where else to turn.

I’ve had issues with my head and neck since the vaccine, it was the first issue to make its presence known. I’ve told everyone how it feels like my neck can’t support my head. I cannot be upright and unsupported for more than a few hours without pain and issues. Even when upright I’m normally supporting my head on my hand to appear “fine” and delay the pain.

But mostly I’m dreading the appointments, and not just because of my anxiety around appointments. 2 days in a row, early mornings, and a level of fatigue that I’m really struggling with. Southmead is about the same distance as where my chair went for its service, when I dropped it off I was confined to my bed for the rest of the day. The chair was ready the next day but I couldn’t get up, I knew I couldn’t do the drive again. So I went Thursday, when I felt like I’d be able to do the drive safely. And I haven’t managed anything since. I did those drives at lunchtime, during my “functional” hours.

Managing my health is challenging at the best of times, even harder when I do my best not to appear like I’m struggling around other people. I’m working on that but it’s not easy, my health makes me uncomfortable and I don’t want it making others uncomfortable either. But it’s also exhausting wearing that mask, pushing my body beyond its limits to have a few hours where I can pretend everything is fine.

Those hours of being “fine” do a lot for me, wearing that mask so I can just focus on enjoying something and putting a blindfold on so I’m not distracted by my health too. I’m sure that sounds a bit silly to most, but to get a little taste of joy, and life, like how I used to is what keeps me going.

So I hope, for everyone, that this week is easier and lighter. I hope it for myself too so I can enjoy my pockets of joy and some time in the sun with Riley!