Month: May 2025

Withdrawals are a bastard.

For a large part of my life I felt unseen. This rhetoric in my mind would constantly ask me “why don’t they see me? Why don’t they see my pain? Why don’t they see what I like and don’t like? What else do I need to do to be seen?”

The reality is that there’s nothing I can do to make others see me, and while I have felt invisible before, the truth is that I am seen. The people who really matter see me, that’s why I have such a beautiful circle around me and I consider myself incredibly lucky. 

What I think was a large part of the problem, was that I didn’t see myself. I didn’t think I was allowed to take up space, I didn’t think I was entitled to tell people my likes and dislikes or that they’d hurt me. But I’ve only learned to start voicing these things about me through spending the last 5 years in therapy. I’ve never truly let people know the real me until now, and I certainly didn’t know the real me either.

How could I ever have been mad at others when the reality is that I didn’t see or value me. I’m learning a lot about this. Today for instance, I had to use my voice to advocate for my needs because I could see me and I could see that I am struggling with withdrawals from pregabalin. 

It’s been quite some time since I’ve had any dark thoughts, but this morning I was hit out of the blue. If I’m honest, it felt more like a slap around the face. I naturally scolded my mind for being a bastard and took off for my walk with Riley to mull over what I should do – though I knew the appropriate actions I needed to take. As soon as I got back I emailed my therapist to book in a session and requested a bit of time off of safeguarding. I cannot safeguard others until I have safeguarded myself. 

Truth be told I’m proud of myself, I saw myself and my needs. I took action before someone else gave me a nudge to – because this is what usually happens. Just last week a dear friend reminded me that I do enough, I don’t have to take on more than I can comfortably manage right now. I don’t need to be the people please I once was. It was a timely reminder and one I absolutely needed, but one I should have seen and acted on myself. So today I’m proud of myself for advocating my needs and taking the right actions, though not immediately I didn’t procrastinate significantly. 

I guess this is just my reminder that sometimes, it’s not about whether other people see you because the people that matter most certainly do. It’s about seeing yourself, loving yourself and advocating for yourself in all situations. As you can see I’m not great at this all the time, certainly not with these withdrawals, but I’m a work in progress. I’m also human and I’m going to get it wrong again, but the universe will send me more opportunities to learn and get it right, like I did today. 

It’s been how long?!

I haven’t written anything for sharing for some time now. In truth I’ve been struggling a little, I’m in a period where I just crave the quiet life and shutting myself away for a while. The counter to that is that I haven’t seen people as much and that I hate, but it’s just where I’m at currently. 

Lots has been going on. I’ve started my taper off pregabalin, going very low and slow, using water titration. The brain fog is pretty bad and I get mentally exhausted very easily, even struggling with simple conversations. It’s also increased my head pain more and I’ve noticed that my need for pacing has become much more necessary as I burn out and crash faster. That being said, I’m ok and it’s going better than I expected, but I dropped the dose again today so we’ll see how I fare over the next few weeks. 

I had nerve conduction studies on my legs, which came back negative. They told me I wasn’t there for a full assessment, I just needed a diagnosis, so they went with Functional Neurological Disorder (FND). They believe a bit of physio will see me right, which of course is tosh as I’ve been doing daily physio for several years to try and prevent further decline. 

I’m tired. I’m medically fatigued from all the fighting, chasing and advocating. I need a break. I have an appointment next month for the incontinence, but otherwise I’m checking out for a while. I just can’t keep banging my head against a brick wall, expecting a positive result. I wish I had an answer to prevent my disabilities getting worse, but I’m obviously not getting them in the near future.

The truth is that for the first time in 4 years I’m actually happy. I don’t spend everyday in bed resting, and most days I’m out with Riley for a walk at 11. Most days that’s the best I can do, but I don’t then have to spend the rest of the day in bed, I’m upright and doing very simple and low energy things like a bit of a jigsaw, reading or some admin for the charity. I get to see my friends usually every 2-3 weeks and I don’t suffer significantly for it. I’ve got the most important parts of life back and right now that’s more than enough. I’m content, I’m grateful and I just can’t continue wasting energy on fighting a system that just doesn’t want to understand vaccine injuries. So I’m not going to keep torturing myself. 

I hope one day there is an answer, that I find something that helps to give me some more of life back, or helps me maintain where I’m at more consistently.  But I don’t think that answer lies within the NHS. I’ve been adding supplements and making dietary changes which is what’s given me the most improvements. 

Last week I even made a last minute trip to Bella’s beach with Riley and Mum. I’m suffering for it still, but just 6-8 months ago I couldn’t have even considered that. I mean I did it with Bella when I knew I had to make the decision to let her go, but we weren’t there long and didn’t go far. Last week we spent hours there and then had lunch before coming home. Like I said, I really am suffering but it was worth it. I allow myself a few “silly” days like that a year, where I decide the consequences are worth it and I’m glad I did. 

I have been over-doing things in general. I’ve been taking on as many tasks as possible to help the charity because it genuinely brings me joy and peace, with no additional stress. But I didn’t do it in a safe way for my health, because you can add all the positive distractions you want, normal life stuff is still there and will still need your attention eventually. Like pointless appointments! So I’m having a stricter few weeks; with very few plans, so I can get back to baseline and then build up a sensible schedule that is actually manageable for me and my health; A schedule that balances my want to focus on charity work, while ensuring I see my friends and family and deal with the other normal life stuff. 

I think if I’ve learned anything over the last four years, it’s that life is about the little things. Being able to connect with friends and family, being in nature and receiving joy from the little things like sunsets, army aircraft flying low and kisses from your adorable dog. It’s taught me to slow down, slowing down allows you to actually see and appreciate these things. But I’m craving being even slower. Han said to me a few weeks ago that she thinks I need a holiday, a complete break from life and I think that’s what I’ve been trying to achieve by going MIA and sitting helping UKCVFamily whenever the opportunity arises. It’s not that I don’t want to see people or do things, it’s that I’m in need of a complete switch off and some time to just fester in my armchair.

I’m craving quiet, likely because my mind isn’t very quiet at the moment and no amount of holiday is going to switch it off unless I deal with the noise. So that’s what the next few weeks are about, dealing with the noise in my head while festering in my armchair. If I’m lucky I’ll come out the other end with a clearer head and maybe even a savings plan to get me and Riley away for a few days somewhere. 

I think that’s enough waffling for me tonight, I’m exhausted despite it being a rest day so the thoughts are only more confusing to try and write. I hope you’re all well and I’m going to try to keep on top of posting here a little better. The journaling is a big part of keeping my mind and peace and I shouldn’t be neglecting it like I have. Hopefully I’ll have something useful to write in the next few days! 

Your help is needed.

Sometimes we get an opportunity to help other people. My focus the last few years has been managing my health, trying to get it under control myself , while doing my best to help other people in the vaccine injured and bereaved community. 

An opportunity has come up to help someone I have never met or communicated with, yet she has indirectly helped me. 

Her name is Christine, and she is very dear to someone who has helped me a lot over the last 4 years. Christine is a practitioner who selflessly offered to help Caroline Pover, with no expectation of payment, simply because she cared and believed she could. Caroline herself stated that “Witchy”, as she affectionately calls her, has “saved my life over and over again.” 

But Christine’s own health means that she is now the one in need of help. A little under a year ago she was diagnosed with stage 3 throat cancer, and has been on a journey to find holistic routes to recovery, alongside the support of her oncologist. She now cannot work, and unfortunately that means her financial situation is putting her treatments at risk. 

But we can all help her. Caroline, who’s benefitted immensely from bloodletting, is going to host a live talk and Q&A session on July 8th, 2pm, on therapeutic phlebotomy. To access this task, she is asking for donations to be made to a fundraiser for Christine, with funds set to go directly to Christine as they come in. 

You may not be interested in this topic, many of my readers aren’t dealing with vaccine injury or chronic illnesses, but any and all donations would be gratefully received for this incredibly selfless woman who has enabled Caroline to personally help me, and the entire vaccine injured and bereaved community, over the last few years.

The world needs more people like Christine and Caroline, but right now we can all help to get Christine the treatments she needs to keep fighting this awful disease. 

https://www.crowdfunder.co.uk/p/carolines-blood-talk-fund-for-christine