I’m a bit blown away by how many people resonated with the first part of my story. I shouldn’t be, I’ve heard hundreds of stories like mine, most even worse. Mine is not unique.
So, I’d left it around 2-weeks post implant, October 2023. It was around summer/autumn that I stated to have little accidents. Nothing major, just small leaks.
As we know I was already disabled, and some days were ok but other days my legs were particularly difficult to get to move in a coordinated way. But the PEM was still a real problem. Some days if I’d managed to see a friend, I’d be ok, other times it could make everything worse for a week or more or even send me into a full-blown flare. I was also starting to get louder about my legs, tremors, burning pains, weakness etc. I was getting the implant, and my HC and Occipital neuralgia were going to get better, so now I could look at what else what on my list of problems with more gusto.
I’d pushed for a referral to Rheumatology which was denied, so I pushed for physio. Yes, over 2.5 years post vaccine, already disabled and I hadn’t even been offered physio. There was NOTHING offered to me, no support, no help, I fought for everything. What I specifically wanted was to try hydrotherapy, because I was doing my own physio with no benefit and had to be very limited, so it didn’t cause PEM. I should add, I still wasn’t diagnosed with CFS at the star, but I recognised that I was experiencing PEM with a little common sense.
I was referred to my local physio, who after doing a quick chat said I needed much more specialist care than they could offer, and they couldn’t do hydrotherapy. So, they referred me to the Rheumatology physios at the RUH. Where the rheumatologist didn’t want to see me.
The physio appointment was not even remotely what I was expecting. We spent a long time going through everything, over an hour of just being sat down talking. I discussed how in the evenings I came downstairs for dinner and stayed downstairs until bed. But that throughout the day, and the evening, I managed my fluid intake. Particularly in the evening, because I couldn’t manage an additional trip upstairs to go to the toilet before bed. So, I managed my fluids so I could wait until bedtime. I discussed how my mum did nearly all the cooking, cleaning and shopping. How she helped me with personal care when I physically couldn’t manage it, walking my dog for me, just about everything. She asked if I’d considered a commode downstairs. I was 30 at the time of this appointment, no I bloody well hadn’t.
She then said she wasn’t sure they could help me, and that occupational therapy would likely be the next step. But that she still had more questions so to book a follow-up on my way out.
I was still constantly chasing my GP for help and support. I’d changed GPs after my assigned GP was very dismissive, including the fact that he was (and still is) marking my monthly medication reviews as being complete, but I hadn’t had one since early 2022. So, I started booking to see a different GP who would at least listen to me, not perfect, but a much less traumatic experience. My neurologist kept telling me there was nothing wrong with me, this was just a case of “these things happen” and “as quick as it’s started, it can stop again.”
In 2024, I’d finally admitted to my GP that I was having continence issues, but also without feeling that it had happened or when it was happening. Which led me to realise that actually I couldn’t feel myself urinating at all. I had some issues with numbness and pains and needles, but it was always short lived and so on the list of symptoms I deal with but haven’t got the energy to chase down with the doctors. This was getting to be a long list. This along with my mobility issues was causing me great concern and we really needed to stop ignoring it. As I’d had the implant, I could no longer have MRI scans.
I’d had many MRIs since I was an early teenager, when my migraines started and a pineal cyst was found. Then again when the HC started and one post-vaccine. My neurologist told me there was absolutely no findings and no changes to previous findings. Yet when I met my neurosurgeon later in 2021, he used that same MRI to diagnose mild Chiari malformation, bloody vessels attached to certain nerves and a “distortion” of some nerves. What j got stuck on was how many MRIs I’d had in my life, and no one had ever mentioned Chiari malformation before.
So, I couldn’t have more MRIs, this led me to discussing the issue with my neurosurgeon’s team, who would be very interested in finding out if j had a problem with my nerves and suggested my doctor order a CT Myelogram of my head and pelvis. What was ordered was a standard CT of my pelvis.
So, when it came back and clear, I tried to speak to my doctor who was unavailable. So, I spoke to another doctor at my GP surgery. I begged for the correct scan to be ordered, once again having to explain why I couldn’t have an MRI, which led to being asked what HC was and why I needed an implant for it. But I again asked for the correct CT to be ordered. When I spoke to one of the doctors, she’d previously agreed to order the original scan because she felt like a lot of these issues highlighted an issue with my nerves. Including possible MS. The doctor I was currently sat with was the trial opposite, no interest in helping me. I said, “if the doctor suspects I have a nerve problem, but you won’t fix the error made by this surgery by ordering the right scan, how will I get better? What am I supposed to do now?”
“You get on with it.”
I’m not an argumentative person, and 99% of the time I won’t pull you up on something hurtful you’ve done. But I was exasperated. I asked whether he would say that if I was his daughter, sat here, pleading for someone to help her. He accepted it was easy for him to sit there and say that, but his decision was final.
The scan was reviewed by the spinal surgery consultants at the RUH who called me in for an appointment. The lady I met I initially hoped would help me, instead she explained that they don’t do CT myelogram at the RUH, that I’d need a specialist centre line Southmead to have that specific scan. But that the normal CT showed my spinal cord was fine, and the calcification of some vertebrae was normal. I asked how they could be sure there wasn’t peripheral nerve damage or an issue elsewhere on my spine. She said there was a chance my issues could be explained by there being compression of my spinal cord in my neck, but that even if they found and removed the issue, I wouldn’t get better, it would only stop me getting worse. I said YES! That’s all I want, someone to stop me continuing to get worse, it’s all I’m chasing for at this point. But she said they wouldn’t do another CT because I’d had one and that would be more radiation, which I said was a risk I’d take. She said I’d need to see Southmead but declined to do the referral. That was my doctor’s job. She then wrote in my letter that I walked with a normal gait, when I’d agonisingly staggered from the car park.
To add salt to my wounds, I’d seen my neurologist again who again had told me there was nothing wrong with me. I pleaded, but I’m in my 30s without children, I shouldn’t be wetting myself and I should be able to feel when I have! She led me on a bed, testing basic reflexes and poking me with a pin to mid-thigh: “see you felt that there’s nothing wrong with you, Chloe.” I didn’t say I couldn’t feel my legs, not today anyway. She said it was my bodies “perfectly natural response to pain”.
In my appointment letter, she’d written that I walked with a normal gait again. She’d also added two new diagnoses to the letter: chronic pain and chronic fatigue syndrome. But she didn’t tell me this in the appointment, in the appointment I was told there was nothing wrong with me and once again “the vaccine hasn’t done anything to you”.
Because I was waiting for the CT scans, I postponed my follow-up with rheumatology physio because I hoped I’d have something supporting to go in there with. Something that they could help me with. I admit that with the scan, doctors’ appointments, and neurology and spinal teams causing me devastating disappointment, I didn’t rebook to see them. I couldn’t see the point when I was no further forward than when I first saw her, and she’d already told me she didn’t think she could help me then. The last thing I needed now was to once again be told to get a commode.
Follow the appointment letter from my neurologist, I went to see her another new GP I’d started with. The one who was keen to help and ordered the original CT had left the practice, but I’d found another who would at least not totally gaslight me. I explained that I would not be accepting any further appointments with my neurologist, that she’d repeatedly caused me harm that meant I needed to pay for extra therapy sessions. The GP, in trying to help, said that she’d been my neurologist since I was 12/13, so it was probably quite challenging for her to differentiate to how I was now, compared to 3-4 years ago. I pointed out that if she couldn’t make an unbiased clinical observation of the patient sitting in front of her right now then she shouldn’t be practicing medicine.
And I was still bloody wetting myself! Not much changed or happened from this point. In 2024 I’d started having severe food reactions, including passing out and not being able to breathe. By the end of summer 2024, I was restricted to just a simple chicken salad as it was the only thing I didn’t react to and eating had become very scary.
The doctor ordered allergy tests which came back clear and insisted I saw the dietician as eating chicken salad only wasn’t good for me. So I went to the dietician, expecting a lecture on healthy eating. I competed as a powerlifter, I knew all about how to eat well because I had a nutritionist for a few seasons teach me. I didn’t need teaching how to suck eggs, though I couldn’t eat those either.
I had just come to expect every appointment and referral to be disappointing and to not get help or support. Why should this be any different?
To my great surprise, this was very different. She had me do a food diary, specifically when I’d had reactions, while she said she needed to speak to a colleague in the private sector. I’d sent my diary, and when I met her again, she told me that both her and her colleague agreed that I had Mast Cell Activation Syndrome. I wasn’t losing my mind, by body was being really sensitive. It was at the point that I remembered how immediately post-vaccine I started having breathing issues, which was diagnosed as bronchospasm because of my Indomethacin. I’d been on it since 2016, if I had a flare, I increased my dose until the pain was managed, then gradually reduced back to my maintenance dose. But I never had issues with it beyond stomach issues. This must explain why suddenly I was having a reaction to it. I’d also repeatedly told my friends and family that I felt like I’d become allergic to stress. I worked in the construction industry; stress was normal for me but now my body couldn’t tolerate it. I remember being present for an argument, I wasn’t involved, and suddenly I couldn’t breathe. I was having a panic attack for someone else’s argument, but it was more than that. Stress just made me feel incredibly unwell, and since the vaccine, I’ve been dealing with a lot of it. MCAS made so much sense.
We started on a low-histamine diet, and I managed to convince my GP to prescribe antihistamines. However, they’re in my medical records as being prescribed for hay-fever. Eating became less scary, reactions were become more manageable when I did make mistakes, even my inflammation levels were down. My watch wasn’t as tight some days and the biggest shock of all was that my implant was suddenly providing me relief. The second biggest benefit of the diet was that I was no longer bedbound. I still can’t do more than I could before, but I can be downstairs in my recliner rather than in bed.
2 weeks after the surgery, my implant stopped working. In fact, I was terrified that I’d pulled the wires and broken it. What I learned was that was entirely expected, they set it up with an initial programme which you can feel, and then once it’s settled a bit and scar tissue starts to form, they’d reprogramme it. No one told me to expect this, so I was terrified and beside myself because I was so convinced I’d broken it. Those first few weeks I felt incredible, the morphine definitely helped, but I had hope again and suddenly that hope was ripped away.
I had reprogramming after reprogramming, but we just couldn’t find the relief I had post-surgery. My pain levels were still high constantly, I had more good days again, but it was always short lived. Then, after starting the low histamine diet at the start of 2025, finally I was getting relief. I think now, as I write this, my pain is as good as it’s going to get with the HC and occipital neuralgia. I’ve had quite the decline over winter, so actually I’m currently in a flare. But outside of the flare my pain is around a 4/10 which is a huge improvement from 10/10. Often it rises, usually if I’ve been upright too long, been a bit active, poor sleep, or eaten something I shouldn’t have. But the baseline is around 4/10, with the implant and pregabalin which I need to stop, but we’ll get to that.
I’d been incontinent since 2023, and it was 2025 when my doctor did any referrals for it. This was purely because over Christmas 2024, I was having urinary retention. I emailed my GP to let her know, and she called and told me I had to go to A&E.
After a long wait at A&E, I saw a consultant who was really lovely. She was the first person, since the vaccine, who was appalled at how little had been done for me and that I hadn’t received any support for the “life-changing” circumstances. Her boss checked the CT I’d had done previously and decided I didn’t have Cauda Equina, but she was doing a referral to urology. She couldn’t understand why this hadn’t already been done.
Off the back of this, I saw my GP who asked what the continence team had said when I saw them. I had to inform her she hadn’t referred me to anyone for my incontinence. So, she did the referral.
Around April 2025, I also had another reprogramming session on my implant at Southmead. At the end my surgeon came in to see how I was doing and to ask if I was any further forward with finding out what was going on with my mobility and linked symptoms. I told him, I can’t get anyone to help me, no one will do the right scan and tell me I have to get on with it. He asked if I’d be happy to be seen at Southmead, and I nodded in the affirmative.
While I have met a few terrible medical professionals since the vaccine, I do not count my neurosurgeon among them. He’s a man of very few words but he gets stuff done and does what he says he will. He wasn’t responsible for my awful post-surgical care at Southmead; he was responsible for getting the green light for the £30k surgery in the first place. He is also the only consultant who always writes my condition was exacerbated following the Pfizer vaccine in my letters. I don’t ask him to; he just does and not once has he gaslit me or denied my experience. He’s also never told me there’s nothing wrong with me and I walk absolutely fine.
Within a month I had an appointment at the neurophysiology department at Southmead, for what I thought was a full assessment. It turns out it was just nerve condition studies, which showed things were fine. Partially relieved, and partially frustrated, I asked how they knew there was anything further up my spine causing issues like the spinal consultant had said. She said “I don’t, but you’re not here for a full assessment. But you need a diagnosis, so let’s go with FND.”
I got a little piece of paper with Functional Neurological Disorder, with gait disorder written on it, and a website to read – neuro symptoms.
3-4 weeks later I had my appointment at my local hospital to see the continence nurse. After she collected me from the waiting room, she commented on my legs and the FND. It was a poor day for my legs, but I felt validated that someone could see I didn’t walk normally. I would know, I’d been walking for 30+ years.
She diagnosed me with a neurogenic bladder, because of the FND. She explained it wasn’t surprising given all the neurological issues I had, and we formed a plan to reduce the severity and frequency of my accidents. Then she asked what support I was getting and what had been put in place at home. “What do you mean?” I asked, she asked what the occupational therapists had put in place to make things easier and safe for me at home. I then explained that I couldn’t even get physio, there was no support, no help, not OTs and the only equipment at home was what I’d bought for myself. To say she was angry would be downplaying it, she was so disappointed that I’d just been left this was. I even told her I’d tried to self-refer to adult social care, but they’d told me that as I was still under neurology they couldn’t help me. At the time I was dealing with bed sores because of the amount of time I had to be confined to my bed, and once again I had to fix this myself.
9am the next morning there was an OT knocking on my front door. She did a very quick assessment which led to bath rails being fitted, a frame around the toilet to help me get up and a bath board. She also tried her best to get me a ramp for the front of the house. In February 2025, after fundraising, I bought myself a powered wheelchair so I could do a little bit more outside the house on my good days. But this requires me to get it down the step out the front door. The suitcase ramp they delivered was, unfortunately useless. Instead of having to manhandle a chair out the house, I now had to manhandle the ramp into place, then my chair onto the ramp and down, then lug the ramp back in the house to shut the door. It tripled the effort that was already a struggle.
The OT said she was going to refer me to adult social care to see if they could help with this. After a lengthy assessment, followed by a few more calls, I was denied help on the basis that I wasn’t a permanent wheelchair user, only an ambulatory wheelchair user.
I’d like to add, when I finally decided that maybe a wheelchair might help make life more accessible for me, I discussed it with my doctor who thought it was a good idea. What I didn’t find out until AFTER I sent £4k on a chair was that there’s a wheelchair assessment service she could have referred me to for help.
There’s a lot of other things I had issues with. From early on I started getting severe skin infections from nowhere, I had so many rounds of antibiotics it was ridiculous. The last major issue led to facial cellulitis and taking 3 antibiotics at once. I had to go to the RUH to make sure it wasn’t tracking to my brain. The infection started near my nostril, and engulfed by cheek, chin and eye. The ophthalmologist was incredibly rude, giving me a lecture on picking my skin and how if I hadn’t picked above my eyebrow I wouldn’t be in this situation. Above my eyebrow was a scan from a previous, and minor, infected spot. Not where this infection originated, I even show photos of this current infection and how it had developed from my nose and out, but he continued to hold the stance that it was from above my eye and both my mum and I walked out. The plan was that I’d be assessed and given IV antibiotics, because the antibiotics I was on were touching the infection that was continuing to develop. So, crying, from the RUH car park, I called my GP surgery again and they took a gamble on adding two other antibiotics. These both interacted with the medications I was taking, hence why it was tried before. But they worked, I was just very dizzy and unwell for a week. That was in April 2024, the infected started at the end of March. Before that infection started, I’d already had SEVEN rounds of antibiotics since the New Year, that how bad the situation was getting. Now I have to wash with hibiscrub to prevent infections and have done for at least 3 years.
My medical record still does not reflect how difficult every day is for me. After my neurologist wrote that entirely incorrect letter to my neurosurgeon, I started monitoring my records for inaccuracies. I don’t correct them, I haven’t got the energy to do more fighting, but I make note of them. Such as when a doctor wrote, “patient came in with a walking stick?” Or when last year, after severe suicidal thoughts from pregabalin withdrawals, when I called begging for help, not only was I told that if I needed support, I should be calling Samaritans, her clinical observation was “patient was a little teary.” This was after she’d done a full assessment where I confirmed I wanted to harm myself and others. Another time was when I spoke with my GP about my fatigue last year, and that I was finding watermelon to be helpful but that couldn’t eat the pips or I’d have a reaction. She wrote I was having benefit from watermelon for my “post covid fatigue”. Not the chronic fatigue syndrome I had a diagnosis for. I had the vaccine June 17th, 2021, I first got Covid October 2022. If u get so much as the weakest cold, everything gets significantly worse, every single symptom and issue, and I’d basically isolated for over a year before getting Covid. My need to sleep 20 hours a day and PEM started the day after the vaccine.
To this day I can’t get help for anything. I get told that my health is so complex it’s hard to know what to do with me. Like somehow that makes leaving me to decline with no support or help is acceptable.
I had a final appointment with my neurologist in September last year. I wasn’t happy, I’d made it clear I wouldn’t see her again. But I didn’t want to be written off as me being uncooperative, so I went. Mum asked if I was taking my wheelchair and I said no, my legs were bad and I wasn’t going to give her the chance to tell me there was nothing wrong with my legs.
To my surprise, she had a student doctor with her, and I wondered how the appointment would go. My legs really were awful, and it was the first thing she commented on. “Your legs are much worse than when I last saw you.” I smugly commented that it was bound to happen with no one helping to prevent that.
I wasn’t going to ask for help and give her the chance to decline, so I was a less small and compliant. I also realised she wasn’t cutting me off when I spoke now, she had a student doctor with her, and I took full advantage of it. I highlighted the neurogenic bladder diagnosis and the FND diagnosis. She said she knew nothing about it, but somehow the continence nurse did. She once again asked how I was getting on with the Indomethacin, she did this every appointment and phone call despite not taking it.
The previous year we’d agreed the pregabalin was doing more harm than good after a 30kg weight gain and should be stopped. So, when she commented on my weight gain, I reminded her that yes that’s why you told me to stop the pregabalin and my attempts to do so had severely impacted my mental health so currently I’d stopped reducing. She said, “it doesn’t normally cause weight gain” and I glad pointed out it was on the label as one of the most common side effects. I was not being gaslit anymore by this woman. She suggested she share a specialist’s information with my GP for me to actions referral when I was ready, acknowledging I’d be passed from pillar to post for heat with no improvement. I agreed, though she didn’t say who the specialist was.
She then wrote to my neurosurgeon, and the first line of the letter reads: “I feel I’ve reached the end of the road with Chloe.” I’m not sure we ever found the road, but I was glad to have been discharged from her service. Closing the door on the trauma and medical PTSD that she caused for me was a huge relief. But still she couldn’t accurately record my appointment in a letter, apparently I turned up in my wheelchair!
The specialist turned out to be a FND specialist neurologist at Southmead which was actioned a short time later.
Now the withdrawals. After speaking with many others who had vaccine injuries and reduced pregabalin, I realised that our now very sensitive nervous systems could cause very intense withdrawal symptoms. So, I prepared myself, because I was on my own with this like everything else. They’re water soluble, so I started a reduction of 5%. My neurologist’s suggestion was to reduce 25mg per dose, per week. Which is a 25% reduction.
The first 5% went well, so after a few weeks I dropped another 5% which was a disaster. The following day I was suicidal, and the levels of rage I was experiencing were terrifying. So, I called the doctors and was told I should go to Samaritans for support and to speak to a pharmacist. I asked if she’d be booking me to see a pharmacist, but she said no I had to go to a pharmacy myself. Which I did, and I explained the symptoms and then the phone call with the doctor to be told that it was down to the doctor to help with the withdrawal, not a random pharmacist. She also advised me to asked for liquid pregabalin, which would allow me to reduce in even smaller doses and to ensure the dosing was accurate.
This was all in one day, and so I went back and asked to speak to my GP, not the GO they’d out me with earlier. This request was refused on the basis that I’d already spoken to a GP about this issue that day. So, I put another request in under a different reason. I wasn’t thrilled by the doctor they put me with, who previously told me to “get on with it” but I had to try. When talking he wafted his hand while saying “yes, yes”. Basically, shut up Chloe I don’t want to hear it. However, he did prescribe the liquid pregabalin and booked me to have my taper monitored by the in-house pharmacist. Still no MH support.
The pharmacist called a few times, we’d agreed to once a month check ins, but I only had 2 calls. Once was to tell me that through everything, he’d read the withdrawals only last 2-3 days, so I shouldn’t be having the problems I was. No further explanation or suggestion, just telling me that according to other studies my experience was invalid.
I’d had to increase my dose initially due to the withdrawals, and I cautiously reduced at a rate of 1mg per dose every 4-6 weeks. Again, I was told I needed to speed this up, but I refused on the basis that the rage and depression were already challenging enough, and I wasn’t going to make myself feel unsafe again. The last reduction I did took me down to 89mg and this really impacted me. I held off on asking for help, experience had taught me it wasn’t there for me. So, I didn’t call the doctors for around 4-ish weeks, when I finally relented. I couldn’t go out in my car without wish for an accident to kill me, I was not safe.
I got put through to the mental health nurse, who I hadn’t spoken to since early 2020 when I had attempted suicide before the pandemic. Again, the help provided made me even worse and help to fix that wasn’t provided. That was when I started paying privately for therapy, and before my vaccine, we’d worked to get me into a really good place. Then the vaccine injury happened and suddenly I was having therapy up-to 3 time a week at times. Before I started my pregabalin reduction, I was in a pretty good place, A place of acceptance. We’d done years of trauma therapy around my health journey and life in general. So, I’d stopped seeing my therapist in April 2025 and started the reduction in May or June.
This time the nurse told me to self-refer to Olive Branch, a low-cost therapy service. She would chase up the pharmacist who had failed to maintain the check-in calls and ask for a sedative to be prescribed. Alongside the impact on my mental health, I also had insomnia and hadn’t slept a full night in over a month.
The reality is that I left it too late to call the doctors for help. My friend, recognising that I could sit on an unknown waitlist for this low-cost therapy, contacted my private therapist. She reached out and we arrange an emergency appointment for the next day, Saturday morning. My therapist knew me inside and out, I’d been seeing her since 2020. So, when she said I wasn’t safe and needed to present at A&E and ask to be admitted, I knew I was in a dangerous place.
I got off that zoom and went downstairs to tell my mum that I needed to go to A&E in bath and request to be sectioned. She called my dad and sister who met us there. This was a long day with 2 triages. Then I had a nearly 3-hour assessment with two people form the mental health team. I told them everything. Everything I’ve written here, and in my last post, along with everything I’ve probably forgotten to write here.
Their assessment was that it would do me more damage and cause more trauma to be put in a secure facility than the trauma of going through this withdrawal and the change in my life and health alone without support. They felt that if I could actually get support to fix my physical health, then my mental health would follow.
They also told me I had multiple ground to make complaints. They didn’t mince their words; I’d be dealing with “repeated negligence”. They were going to write to my GP with their assessment, which I admit was a lot less stern than they suggested it would be. The GP had to arrange an appointment to do a proper medication review with me in person, they had to action the referral to the FND specialist, they had to correct the inaccuracies in my records, and the pharmacist had to supervise my taper from pregabalin. I then had to do a referral to Access Community Mental Health and Wiltshire MIND. They also asked the doctor to refer me to a specific private clinic for therapies like acupuncture, hydrotherapy etc. The doctor tried, but it was refused so they’ve done another referral to the RUH pain clinic where I’ve been before.
My friend came with me to the doctors, and I found it really challenging. I got to say what I needed to, how so much had contributed to where I was now at. But it’s very hard to argue with someone who kindly tells you that GPs are just the gatekeepers, they refer out and when someone’s health in complex it’s hard to know where to send those referrals. Also, I now have the FND referral and they’re absolutely certain they’ll be the right people to help me and provide all the support and rehab I need. Once again, I’m someone else’s problem.
I haven’t started reducing my pregabalin again. When I had that appointment with my friend, the doctor suggested I self-refer to Turning Point who were better place to support me with the withdrawals than the doctors. Someone else’s problem again. They can prescribe it but won’t support you when you’re in the majority who have withdrawals when reducing it.
Access were fantastic, I started with them in December and finish at the start of February. Just having a weekly call and to discuss the challenges and then share boom recommendations. It really helped and finished just as I’d reached the end of the waitlist for Olive Branch, perfect timing.
I’ve started with Olive Branch, and my therapist is lovely. It’s challenging speaking to a therapist who hasn’t done this journey with me, but I don’t feel like it’s fair to ask my private therapist to continue working with me at a reduced cost which she did for a long time. She saved my life, and I want someone else to have that opportunity. Now I’m with Olive Branch and we’re discussing what led me to now, and on Monday all this stuff came up. The negligence, gaslighting and traumatic experiences that have come from me fighting for anyone to help me stop getting sicker.
My referral for Turning Point came through recently and they confirmed that they can’t really help me. I don’t have a psychological addiction; my body is physically dependent on the pregabalin. It’s very different, I’m not trying to take more or buy it on the streets, I’m prescribed it and I take it against my will to keep me safe. They did offer an appointment with one of their consultant doctors who was fantastic. She said she’s seen the withdrawals I’m experiencing a lot, and that they don’t disappear in 2-3 days doesn’t mean what I’m experiencing isn’t real. I can reduce at an even lower rate of 0.5mg per dose, so 1mg overall rather than two. And I must listen to my body, don’t reduce until the withdrawals have settled again. She wrote an enormous report which went to my GP, again highlighting that they were responsible for supporting me through this and that the pharmacist must supervise me.
The pharmacist called, we’ve agreed to fortnightly check-ins, and I said that as soon as I was recovered from the old that’s upset my whole system, I would start the reduction. Now I have the weekly therapy with Olive Branch, and I know the pharmacist has been told off by the MH team at A&E and Turning Point, I feel more confident to try the reduction. I have people there to catch me if I fall again.
Beyond that, I’m on my own. I’m seeing the FND specialist in April, but you’ll see from my previous post that I just can’t be hopeful for it or anything now. Hope has taken a lot of hits since 2021 and it’s always been devastating. So, I have the appointment, and I want them to help me. I don’t care about not getting better now, I care about not getting worse. Stop me getting worse and I’ll be thrilled. But I also won’t be shocked if there’s no help or support from this referral either, it can join the long list of the others.
I will keep fighting. When I was struggling with my head and the withdrawals, I just couldn’t see a point in all this fighting. My whole life I’ve made me better.
When I had pain and dislocations growing up, I was pushed away and told I had growing pains. I’m 5ft, growing isn’t really something I’ve experienced. My parents had to pay privately for a physio for me, my knee kept dislocating and he put me on crunches at one point. I was very sporty and was on the hockey team, but every match my knee started dislocating. When I was 20 or 21, when my pain was at a level that mum had to help me wash my hair, like she does now, I was finally diagnosed with joint hypermobility. He said I’d likely be in a wheelchair by the time I was 40 and to do non-impact exercises like swimming and cycling.
I did my own research, understood my tendons and ligaments weren’t supporting my joints and joined a private weightlifting gym. Within 6 months I was off pain medication, I had to tie my hands to machines like the lat pull down, but I improved. Within a few years I did my first powerlifting competition and took home a silver medal. 2 years later, in 2019, I was crowned British Bench Press Champion, with a herniated disc in my back from a bad lift. I was in a brace and shuffle walking, but I could bench. I was supposed to be going for the British squat record.
In December 2015, my Hemicrania started. I was at my desk and suddenly there was this blinding pain, it last 30 seconds but by the end I was a shaking, screaming mess, in a ball on the floor. I’m not known for being dramatic, that’s truly the level of pain I was in. After that it kept happening and got more frequent, but the end of January it was constant and I was on maximum dose Tramadol. I don’t take one sick day. I started working the week of my 13th birthday, and since then I worked constantly. By 18 I was doing 2 jobs, I was still doing 2 jobs when I had the vaccine. In 2015, I was working two jobs and studying for my HNC.
After scans and tests coming up negative, I was told I’d have to see my neurologist but that it was a very long waitlist. So, we paid privately and had an appointment 2 days later where she diagnosed HC and would confirm it by seeing if I responded to Indomethacin. It’s the only drug is responds to. It worked, but it wasn’t sufficient just on its own. I had to completely change my routines, and I’ve always had to have routine in my life. But I learned that my sleep was disturbed by pain, so I had to make sure I had the time to get quantity over quality. So, a 9pm bedtime became a non-negotiable for me. Pain was worse in the mornings and evenings, it still is, so I planned my workday around a gentle first hour at my desk. I was designing buildings; I could risk making mistakes by doing the complex stuff early. I changed my eating habits until I found the right routine to prevent stomach damage form the Indomethacin. When I started it I wasn’t told about the damage it could do without food or PPIs, until I ended up in an ambulance with stomach bleeding. So, I fixed that, I used PPIs but really it was finding the right foods that stopped the issues.
But I have always fixed me. There’s been a helping hand at times from the doctors with the right medications, but it was me who learned how to manage my pain, dislocating joints, stomach bleeding, and HC. I fixed me.
But now, I don’t know how to fix me. Ultimately, I don’t know what’s wrong with me. I developed a strong mind-body connection through my powerlifting, even now I can still isolate and work each individual muscle. Because I maintained that with the self-physio. But it isn’t stopped me getting less mobile or my pain and fatigue increasing again.
Much to my doctor’s disappointment, I must do my own research. I fit the criteria for Post Acute Covid-19 Vaccine Syndrome, mitochondrial dysfunction and whole heap of other shite. I also have the symptoms of POTS. I spoke to my GP about the symptoms, she told me, “It sounds a little potsy” and I agreed. I explained how it’s mostly manageable, and I listened to my body telling me what it needs but that during hot summers it’s really challenging. No further action and that discussion wasn’t even added to my medical records.
This is what I’m facing. And now I’m back paying for therapy and I use my PIP to fund a Motability car so that I can be independent with my wheelchair and make driving easier again. This means I cannot try lots of expensive supplements and private therapies to try and fix me like I did before. I’ve always used the NHS to provide a diagnosis, and my own intuition and research to provide the cure (management). But now they can’t even provide the diagnosis, and they definitely won’t provide the cure.
What is surprising from this journey, is that in my first PIP assessment in 2022 and my review last year, they didn’t hesitate in putting down for enhanced mobility and now enchanted for both. The DWP who are notorious for gaslighting, dismissing people’s struggles and marking them down. They were the ones who didn’t question how challenging every day is for me and the support I require. If it wasn’t for my mum, I’d have to have carers from the council. Meanwhile the doctors are asking in my notes why I have a walking stick.
So there, that’s my story from the last 5 years. This is why I get my back up when people try to help and push me into going back to the doctors to ask for MH support, referrals etc. The help is not there for me and it’s damaging for me to keep trying. So, I don’t know what my next step is if the FND specialists don’t help me in April.
I spend my days daydreaming about working, about the places I’d go hiking if I got to walk again. Mostly work. I have so much ambition, and I don’t know how to use it. I’m certain there’s something I can do to help generate an income that will allow me to try more therapies and supplements, but I also have no imagination and not one entrepreneurial bone in my body. I also dream of being in my own home, independent living. I’m 32, of course I want my own space, I’m not supposed to be back living with my mum who does the cooking and cleaning like I’m a child again. But I can’t even afford £30 a month to try another supplement, let alone buying or renting a bungalow so I can feel like an adult again. I also wonder if a manual wheelchair would be beneficial and easier in some circumstances, but again that’s not something I can afford. Same as my wheelchair is due (and needs) servicing, but I don’t have the £100 for it right now. I must save for it.
So, I write. I write for me, for my own health because it’s cathartic. I also write for others, because not everyone feels safe enough to share their own story. And I write because frankly there are very few things I can do when I haven’t got the energy to be anywhere other than my bed or recliner. Anything I do has to not cause additional issues when I’m unable to get out. So that when I do feel able to get out, I have the energy to enjoy it and have engaging conversations my loved ones without my brain and energy crashing.
The cognitive decline post vaccine was severe. I kept trying to go to work, but I didn’t know how to do the most basic command in the software I’d been using for over 5 years and could previously use in my sleep. Suddenly it was alien. And my Brian crashes. I can be driving somewhere in town and suddenly have no idea where I am or how to reach my destination, it can be scary. I also don’t retain or recall memories easily, so I have to write everything down. It’s the only way I’ve been able to write all this, because I’ve previously written it down and could refer to it.
All these things that people don’t see that mostly I don’t allow people to see. My anxiety of people seeing me walking is intense and I make jokes. “Don’t worry, it’s funnier with music!” Or “I’m auditioning for the Ministry of Silly Walks!” When I see friends I put on a mask, one that says my pain isn’t too bad and my body is cooperating. When actually I’m smothered in Volterol, in absolute agony and but I just want to be normal for a few hours. I use extra energy I haven’t got, knowing it’ll cause a crash that could last weeks, so I can stand or lean and chat, like there’s nothing severely wrong with me. Like I’m not suffering every second or every day, in different ways. Each time I wake up is a surprise as to what I’m going to get. Every time I take a step, and realise I walk funny, it comes as a shock. “Oh shit, I forgot about that.” That’s grief, trauma and sadness, repeated every single time I walk, or try to climb the stairs.
But I have made some improvements like I mentioned, especially with the low histamine diet. But my tremors have also improved, I still have some bad days with them. But now I am safe with sharp knives, usually. However, I still can’t cut tough food, in January I had a roast dinner at a pub and had to ask for a steak knife. Not because the meet was tough, but because I just couldn’t cut it and some days are like that. Some days I must have food like fajitas because I can’t hold or use cutlery and some days, I can’t throw a ball for my dog or have a short game of tug of war. But I adapt, I can’t easily throw a ball for my dog by hand, but it’s manageable and easier with a ball thrower, and I can use sharper knives for tougher food or eat finger food.
There have been great things that have come from this journey, most significant has been the support of UKCVFamily; a registered charity who support vaccine injured and bereaved. I’ve made lifelong friends there, and when I’m not struggling as much, I volunteer for them, because they have given me and others so much. A place where we don’t feel so lonely and isolated, where our challenges with the NHS and government are shared, so we support each other. They advocate in parliament, always meeting with MPs to try and get us the support we need, being core participants in the Covid Inquiry, hosting zoom socials and finding practitioners and therapists to host talks and healing sessions for everyone. They do this despite being vaccine injuries themselves, they’ve created a whole community so none of us feel alone in this journey.
My friends and family too who have been relentless in their support for me, from making me laugh, planning activities which I can manage, writing letters to my consultants and advocating for me when I can’t do anything but shut down. My mum who cares for me every day, despite being 62 and working full-time. My dad who visits me weekly for lunch and my sister who calls, sometimes daily if I need it.
I’m exhausted from it all, the fighting and the surviving. But this is my story so far, and I truly hope one day I can tell you how well I’m doing.
