The circle of life.

Right now I am fully at capacity and falling into old habits of bottling everything up and trying to make sure I don’t spill my situations and emotions on other people.

My grandma is deteriorating and slowly transitioning from this life to the next. It’s incredibly painful to watch and have such up and down visits with her. I will of course keep visiting because those fleeting moments of the Grandma I know are so valuable and I will savour every one of them. I also want to be there for her, for what is likely an incredibly scary time. Even when she tells me I shouldn’t have to see her this way, I will, because she’s my Grandma and I love her. And I’ll keep visiting so she remembers that.

So at the moment I am just incredibly worn out from keeping family up to date, facilitating visits and visiting myself or being with Dad and Tash during appointments.

On top there is the situation with my own health. I had a call a few days ago from Neurology to say my neurologist ‘doesn’t want to wait any longer to see me’ and I have an appointment on Monday morning. I haven’t even had an appointment through for my CT scans yet, and you’d think the waiting list for those would be significantly less than the ones for neurology. So I’m of course a little apprehensive, maybe even a little scared. I know I need to find out what’s going wrong with my body, and it’s a relief that the healthcare system finally wants that too. But to skip the queue like this makes me worry.

And then there’s Bella. My sweet, sweet girl who seems to be on a steep downwards trajectory. Her tantrums are intense and when she’s not throwing one she is needy or crying. I don’t know if she’s crying in pain or what she’s trying to tell me. The check up and bloods were only a month or less back so I don’t think it’s anything more than a dementia decline. But I am terrified that we’re getting close to her telling me she’s ready. And I am absolutely not ready.

I am too scared to feel any of these things because of really do think they will consume me. I’m scared of where I might find myself, but at the same time the sadness, grief, worry and anger are already consuming me. I’m permanently overwhelmed and feeling absolutely awful at all times. But I still can’t seem to open those doors to start the processing. I guess I’m scared that if I open them I won’t be able to pull myself out again.

So that’s where I’m at. That’s why I’m quiet, that’s why I’m not engaging. It’s one of the realities that regardless of my life coming to a stop 3 years ago, every thing else carries on. The normal circle of life continues and I have to somehow find the strength within me to cope with that as well.

Woe is me.

I’m 6 days post reprogramming now, and day 2 of feeling awful. Until today my head was following a pattern of alternate 8-10/10 days followed by 6-7/10 days. If you’ve been reading my blog for a while you’ll know it’s been some time since I’ve seen pain levels below 8. Shockingly, at 9.30am Sunday morning I was driving to go see Hannah and her family to give Ivor his birthday presents and enjoy some family time. It was wonderful and I was shocked at how well I was doing. Normally, even a good day won’t have me functional before 10.30/11.

But today breaks the pattern, if you can call it that after just 6 days. My head is blazing, my tremors are making basic movements incredibly hard and I’m exhausted. But I made a risky cup of tea and held a zoom social with other members of UKCVFamily. I feel nervous holding these, scared I will say or do the wrong thing. Right up to the moment everyone else arrives and you remember we’re all doing something new here and learning on the fly. Then I relax a little and try to ensure everyone gets space to discuss what they need to.

Admittedly, I do feel a little brighter since the zoom. Perhaps lighter is the better word because I still feel awful, but I feel more relaxed now which naturally makes the tremors a bit less controlling. I’d like to think I could log in and do a bit of coursework, or perhaps finally paint my nails which I haven’t even been able to keep tidy since Christmas, let alone apply polish. But I’ve expended more than my body was capable of today and I know I must go back to a horizontal position and fire up the kindle.

Which, quite frankly, I’m fed up with. I read some really good books and series but I’ve grown quite disinterested in them of late. Which could explain why I’ve not been having such a good time because I’m sick of fucking lying here unable to do anything. So I pick my phone up for distraction – I truly hate phones. Being on it drains me and quite often makes me feel a little low. I’m not doom scrolling or taking in negative content, but still the act of being on my phone is exhausting. It’s the same with tvs and my laptop – screens do me no good which is why I limit them so much. I used to have such a healthy relationship with my phone that allowed me to use it for its essential functions and occupied my time with healthier activities. I no longer have that luxury and so it has seen my screen time increase significantly. Whether it’s playing brain games, sudoku or helping with the group, I’m just eagerly searching for a distraction and hope that I’ll find a quick serotonin boost while I’m there. Though helping with the group really doesn’t come into the ‘unhealthy’ activity category because it doesn’t make me feel like crap, quite the opposite in fact.

So I’m trying to change these bad habits that I’ve allowed to creep in. Though I am unbelievably bored of reading and lying down and not being able to live, I also know that without lying down, actively resting, and reading, that my health suffers. So here’s a little woe is me for you all before I stop procrastinating and actually lie down. The book I’m currently reading is very captivating, but I just wish more than anything that there was something else I could do that can occupy my mind whilst I get the rest my health is demanding.

I also had a couple of old friends reach out to check in with me recently. It’s very difficult when they ask how I am because the truth is that while the implant isn’t providing relief and my other issues are getting worse, I’ve in fact declined since I last spoke to them. I’ve never like to be a doom and gloom person, or someone who moans about everything, but I’m also an honest person. So it makes for an awkward admission on my part and I never quite know what the right thing is to say because nothing makes me more awkward than receiving sympathy. So I guess if you’ve got any tips on the right way to respond then please let me know. I know these people care and I want to show gratitude for them taking the time to think about me and make contact, but I also don’t want to come across as a miserable bitch. My current default is to flip the conversation onto them, but the trouble with doing that all the time is that when I do finally open up to someone, I’ve got so much stored that I’ve needed to get off my chest that I don’t fucking shut up.

So here’s me today, reluctantly lying back down. I promise I won’t go off on another tangent to delay the inevitable. I do really hope everyone reading this is doing well today, I hope you get to do something exciting and I really appreciate you being here listening to a sad girls woes.

I’m Fundraising.

Some don’t believe what thousands have experienced. Some will laugh and mock, others will dodge the topic altogether.

I genuinely don’t care what side of the fence you sit when it comes to vaccines. You’ll probably be surprised to know that I do believe in them, childhood vaccines being one example. However, I also know, without a shadow of doubt, that for thousands the benefit was not worth the risk when it came to the Covid vaccines.

I lost any form of a meaningful existence within hours of this vaccine. It took me years of therapy to reach a point where I’m not angry anymore. I accept the loss of who I was and what I could and did do, and accept who I have to be right now to get through this period. I still fight everyday to get some form of a life back. But in the meantime I now volunteer for UKCVFamily, a charity and support group for those injured or bereaved due to these vaccines. My initial role was as an admin for the support group, but I’m now also their second safeguarding lead. Each day, even when I’m so unwell I can’t get out of bed, I get to help others reach the support they need.

This charity means a great deal to me and so many others. It has genuinely seen my mental health improve significantly, meaning I don’t need such regular therapy sessions. Sessions I’ve had to self fund, despite no longer being able to work. But volunteering now gives me purpose despite my suffering, because let’s face it even the busiest person can dedicate 10 minutes every few hours to helping someone else. So that’s what I do now.

I still hope to be better one day, I mean I’ve been through some WILD treatments because of what happened to me. I have a nerve stimulator implanted in my head and chest, with wires through my neck. I’m part of a clinical study. I’m still having regular reprogramming sessions to try and get this working sufficiently to reduce my pain levels. I also have the most horrendous mullet hidden under my beautiful hair. I’m also awaiting tests for suspected demyelination due to the vaccines, which could be the cause of my widespread pain and disability. It has taken 2 years and 11 months for a doctors to not dismiss these symptoms and the changes in my health and finally look at investigating what has happened to me.

I was competing internationally as a powerlifter, British Benchpress Champion and I designed buildings for a living. The last job I worked on was Google HQ in London, alongside doing all the steel fabrication drawings for the Battersea northern line extension. I’m now disabled and have a snazzy walking stick. I was someone that couldn’t sit still for 5 minutes. I was always doing something and if I was told I couldn’t then that would just make me even more determined.

I’m still determined, in fact more so than ever. But right now, while tests and trials tick away in the background, I focus on what I can do now. That’s helping others, others worse off than me, others who are still angry and only just finding support after 3 years. Helping to change the way adverse reactions are handled by both the government and healthcare professionals. Helping the way the world sees us. We’re no different from the next person, we’ve just had something awful happen that changed the path of our lives.

So I’m raising money for them, money that goes directly to helping us change the world for thousands of people. The trustees and volunteers, like me, receive no money for what we do. It truly all goes to helping our members and our fight for better treatment and understanding. We don’t get to sue the companies that produced these, and the majority of people are having their claims for the Vaccine Damage Payment declined. I know what happened to me and my experience. I also know that in the last 3 years I’ve lost nearly £100k in income as a result. The VDPS is only £120k – that’s less than 4 years income for me, but it is supposed to be enough to make up for the possibility than I may never be able to work again. I’m only 30, I was 27 when this happened. Is £120k enough when my situation may remain the same for another 40-60 years, when I know I will decline throughout that time? But that doesn’t matter, because my claim will also likely be declined.

I hope you’ll consider donating or sharing – it truly would mean a lot. But if not, I hope you’ll consider ensuring to be kind and compassionate if you come across someone else like me. I could have considered fundraising for myself to get the private tests I need to understand what’s wrong with me, but this is bigger than me. Much bigger. It’s called UKCVFamily because we are all in this together.

Time to rest.

Yesterday I had reprogramming. I hope it’s gone well, I’ll hopefully know in a few days once my nerves settle down. We’ve set up a new programme, which has 3 programmes (locations) running within. One from the back of my head up over the top, for the greater occipital nerve, one from behind the ear to the top of the ear to cover the lower occipital nerve and a third along my jaw. This tracks my trigeminal nerve to cover my face pain. The first two locations are the targeted areas of my previous programming, but are set up using a slightly different part of the nerve for the same effect. The thought behind this is that my nerves are sensitive and either get used to stimulation easily, or get overstimulated. So I will run this new one for a few weeks, or until it’s not effective, and then switch to the old programme. I will keep repeating this pattern in an effort to keep the nerve ‘guessing’ and to stop overstimulation. So I’ll have to give it a couple of months so we have a chance of seeing if this works.

I also spoke to my surgeons registrar Tuesday and following his advice the doc I saw last week has put a referral in for a CT of the lumbar spine and head. MRI is a firm no with the implant being in my head because of the high risk associated with the metal I now have vs the magnets of the machine. So CT is the only option. She’s also referring me to my old neurologist so she’s in the loop and can give her input on the scan results and next steps. She’s certain that ‘we’re clearly looking at a nerve issue here’ so hopefully the scans can show what’s going on and how to move forward. In light of this, I’m going to ask to postpone my appointment with the rheumatology physio next week, where she wants to discuss ‘what is pain’. Aside from it sounding like a monumental waste of my time, I think it would be an even bigger waste until we know what we’re trying to treat/manage.

So a lots happened in a few days and I’m quite exhausted now. And in pain. So much pain. Interestingly today my HC switched sides and stayed that way for 12 hours which is rare for me. It happens, but normally for an hour or two. This was all day and it felt like sheet lightening in my head, followed by a pick axe to the temple. This was actually how my HC started, 30 seconds of this severe pain. I genuinely thought I might have an aneurism first thing. So it was an absolute delight when I had to drive to Bristol and back. But that’s just the way the dice roll sometimes.

Otherwise there’s not a lot to report. I passed another unit of my safeguarding course and I managed to see all my friends between Friday and Monday which was lovely. I’m of course paying the price, but with all these things going on I just haven’t been able to switch off and rest. I just feel wired and find myself constantly reaching for my phone or food for a distraction. So I decided seeing everyone was a good idea and I honestly have no regrets. I needed to see them all and feel normal for a few hours while all this absolutely abnormal (for a 30 year old) shit is going on.

I’ve let a lot slip the last week or two. Well the last few months if I’m being completely honest. I’ve had so much on or to deal with that I just haven’t been able to see my friends as often as I, or they, would like. But I also feel I haven’t been able to contribute to my volunteering as much as I normally would. And as some will have noticed I’ve not even had anything in me to do much writing, which is my strongest ally when it comes to maintaining my MH. Without writing I am not truly processing life, I merely come to write updates. But I seem to have lost the spark where it comes to writing to just clear the mind. The sort of writing I never thought about. I now seem to have too much in my head that I can’t for the life of me identify one thing to start writing about. So I wrote another update instead!

I suppose an update is a good place to start decluttering. I wrote the above last night and today I’m feeling awful, but I finally feel like I can post this and just rest for the day. So an ‘update’ after getting things organised and my reprogramming done seems to have done the trick.