Tag: covid inquiry

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

Forgetting to live.

I wonder, often, what I ever did to deserve the people I have around me. The ones who cheer me on, give me the lessons I need, and the tough love! 

Last night a lovely friend called me to give me a lesson of sorts. The short is that I should be so afraid of what may come that I forget to live. 

And that got me thinking – what life do I want? I’ve said before I’d be ok if this is my best, but what would I do with it? I love writing, but I don’t have an inspiring mind. I write what I feel, I write what’s real to me and sometimes words of encouragement for others when they need them. I hoped, should I get more mobility, that I’d become a dog trainer. The reality is that I’ve never had the mind to understand how to monetise the things I’m good at. 

I don’t know what I want my ‘career’ to be. I use the change in term deliberately, because what I do is very different to what I want my life to look like. The answer to that I already know. 

I want my life to continue being full of love. I want to laugh often, I want to see more of the world and I want to experience the little moments that become the big memories with those I love and who love me. I want to continue helping people. In truth, I hope that I can continue volunteering as I do with UKCVFamily for as long as I am able, I couldn’t imagine ever not doing that. It’s the first ‘job’ I ever felt such dedication and drive for, a job that isn’t a job, it’s not work; it’s a privilege. It’s an honour to help those who saved me, and it’s a cause I feel extremely passionate about. I meant what I said, I always want to be a part of the solution and I will always have deep love for the members and volunteers. 

I’ve digressed…

I want to make memories I’m proud of, but mostly I just want to know that at its core, my life is a happy one. 

I’ve only lived a short life so far. 31 years isn’t a lot and I have a hell of a way to go. And the point my friend made was right, I am FAR too young to be so worried about what may become of my health that I forget to enjoy the life I already have. I’m sure there will be some deep thinking on the horizon while I try and work out what I can and want to do, and a thought for all the things I want to try.

I said in my previous blog that I see others doing things I fear I will never get to do, but perhaps I can and it just looks a little different. Perhaps there are amazing opportunities and bucket list adventures available to me, I just need to stop thinking I can only do them if I’m able bodied again. So what if I fail, I’ll bet I’d still enjoy trying.

What the Covid-19 Inquiry meant to me.

I haven’t discussed the Inquiry much on here. It was a huge focus during January but I don’t often discuss things like this. I don’t mean vaccine injuries, it’s the political shit that I don’t discuss. It’s not good for my mental wellbeing to be involved with it. But I am involved in it, because I AM vaccine injured. 

My thoughts on it are simple; could it have been better? Yes. Do I think opportunities to help the injured and bereaved can come from it? Yes, providing that the right recommendations are made and that more people are honest about our existence. We learned that everyone knew the vaccine injured and bereaved would exist, but that nothing was done to help us or prepare for us. Still nothing has been done.

But what really mattered for me during the Inquiry was the impact it was having on members of UKCVFamily. As safeguarding lead, and as an empathetic human, it was hard to witness so many struggling with the things some witnesses said, and yet they couldn’t switch it off. I get that. For weeks we were listening to a dissection of all the decisions that led to our injuries, or worse. Of course we want to know as much as we can. For me I couldn’t, I couldn’t watch it because I know absorbing heavy content is detrimental for me. But for many that did watch it, and even those who didn’t, it was and is traumatic.

The hardest thing with safeguarding is there only being so much we can do. I’m honoured to have been trusted to be a listening ear for so many, and honoured to be trusted to have this role in the first place. But we can only do so much. Hestia is an independent service offering support throughout the Inquiry. As core participants, that meant this service is available to our members and I’m so grateful for that, it’s been beneficial for many. I also learned a lot from the Trustees who helped with the safeguarding during this time, lessons that I can take on board and apply to future safeguarding concerns.

The safeguarding aside I took on some extra work to support the Trustees. Again, it’s a privilege to have been able to do so. They worked their arses off for 18 months, and those 3 weeks of the Inquiry were even more intense for them. So I got to help with some social media content alongside the extra safeguarding, which really was a drop in the ocean compared to their workload. But anything I could do to help I was eager to try!

The extra work was hard, I’m not going to pretend it wasn’t because I’m still recovering. However, I did it and survived. Even when I took on Riley just 3 days before Module 4 started. I did it all, and I’m so proud of myself because just 6 months ago I wouldn’t have lasted a day, let alone 3 weeks! I was trusted to help, which is something I’m equally proud of. 

I’ve always had imposter syndrome, it stemmed from many years of fearing myself which I’ve discussed before. I know I am a decent human being, my instinct is always to help and have compassion, but imposter syndrome plays a role in trying to discredit me. So when others trust me to help, when they trust me to support them or do some extra work it’s truly the greatest feeling. To know that others see me as a good person is a middle finger up at that little voice. 

So my thoughts on the Inquiry really have fuck all to do with the Inquiry. I got to do more to help a community that I love so deeply, to support a charity that will ALWAYS be a big part of me, and to work among a team of the most inspiring people you could meet. I’m proud of myself, because I really didn’t want to be here for a long time and yet for the first time in my life I’m experiencing the feeling of belonging; of being exactly where I am supposed to be. Learning and being supported by some fucking courageous humans as we all try and muddle through as best we can. 

So, fuck the Inquiry (though it was a very important step in our journey), I’m just looking forward to seeing what UKCVFamily can achieve next. I’m looking forward to seeing members get the help they deserve, I’m looking forward to being a part of the solution and I’m looking forward to the lessons I can learn throughout this journey. 

I’m a work in progress.

Sometimes I hit a wall. The one I’m at right now is solid. 

I’m slowly starting to feel better, today my pain is slightly reduced, but I can feel it sitting there ready to kick in. My body battery is better, but I’m afraid to use it. Using it will certainly bring the pain in quicker. 

Mentally I am overwhelmed, I can’t take any more in. I’ve told my mum I need a zero conversation day and absolutely no questions. I can’t make decisions, even the small ones. I’m bored, I feel like I need to do something, yet at the same time I haven’t got the capacity to do anything. 

I have days like this often, particularly if I’ve done too much. It’s a standard part of the recovery period, but one I struggle to sit comfortably with. 

My body isn’t hungry, though it’s craving something. 

I never know how to manage days like this, you’d think I’d be an expert by now but chronic illness doesn’t work like that. Many think you should be ‘used’ to it, but you never get used to it, not really. You can accept it, but it’s uncomfortable to be in. 

I miss my old life, my old body that allowed me to live and be free. I had limitations then, I was still riddle with chronic illnesses, but we had mutual respect and understanding. We could work together much more easily than we do now. 

But I can’t let myself get lost in those thoughts either. I am not her now. I’m proud of where I am but I’m truly desperate for some freedom and independence. That’s what’s really lacking. I feel locked in and I just want to scream “FUCK OFF” at everything. 

I dream of living in my own place with Riley, though I still wish it were Bella. But that’s life, and Riley is shaping into a good companion. I so wish I could care for myself fully, I wish I could do long walks and work again. I wish the simple act of having a bath wasn’t a form of torture for my body. I wish doing my laundry wasn’t worse than the tough mudders I used to do for fun. 

I know where I am, I’ve been here many times. When my body fully crashes, mentally and physically, I find myself in a darker place where I can’t help but dream about the things I used to do while watching people do the things I fear I’ll never get to do. 

I guess, deep down, I just wish things were easier. Not life, life always has its trials and tribulations, but it also has joy and fun and laughter and LOVE. That’s as true now as it was before the vaccine. But I wish the everyday mundane things that I never had to think or plan to do were easier. I watch mum doing chores and I hate how she can do in one day what I can’t in a month. 

I need a holiday, some space alone and some freedom. Though I know my issues will come with me. I wish the simple act of going out for coffee wasn’t so daunting. 

I’m rambling, but I have to get these thoughts out of my head to ensure they don’t fester. The reality is that I am restricted, and I am proud of each small task I manage to achieve. This crash is the result of taking on a significant workload during the 3 weeks of the inquiry. I proud I got to do any of it, even more grateful that I was trusted to help. 

I’m going to keep pushing to raise money for the powered chair. I’m also going to push the doctor to refer me to the wheelchair service for assessment.

I’m scared by the fact that if they find and fix the cause of my disability it likely won’t undo the damage already done (I don’t know if I told you this, from my consultation a few weeks ago). I hate the lack of support with where I am now, and I hate that I just don’t have the energy to fight anymore. Appointments are traumatic every time and I just wonder sometimes why I keep trying. But I know that I have to, I have to know I’ve done all I can to not get any worse and to get the support I deserve. But sometimes the medical PTSD wins, and I’ve been delaying seeing my GP for weeks as a result. 

So I’m going to do the only thing that seems achievable today; I’m going to eat my watermelon, take my medication and supplements and sit with a jigsaw puzzle. Sometimes the healthiest thing to do is something I can zone out into until this darkness passes. There’s no point trying to do things I know I can’t do, only to prolong the flare and inevitably fail. I have to do something I can ‘win’ and that doesn’t use precious spoons or require decision making. I’m going to ask mum to walk Riley, she already offered but I insisted it was a training day and that I’d be taking him out shortly – I won’t. I can’t. I know that now I’ve finally got through these thoughts. 

I am going to share this. I haven’t shared a lot recently which I should have, especially as a lot of it has been more positive with the inquiry and the tasks I achieved. But I also have to be real, because this is a rollercoaster and I can’t expect people to understand if I don’t tell them everything. That’s something I’m not very good at, I try too hard to be ‘normal’, to stand chatting like my body isn’t screaming at me to sit down or like my mind isn’t telling me to be honest with people about what I’m really feeling that day.

I’m still a work in progress, I think we all are and always will be. But I’m trying. 

I’m going to put the link to my fundraiser below. If any reader would be so kind as to share it I really would be grateful. I’m desperate to be free again and this is the only way I can achieve that right now.

https://www.justgiving.com/crowdfunding/cp-212?utm_term=x3N32Ej2R

To Charlet and her army.

A little under 2 years ago, quite by chance, I came across an online support group called UKCVFamily. That summer I joined 3 of their, now, trustees and 2 other members in Parliament. 

This was the first time I’d ever met other injured people in person and I was welcomed with open arms, smiles and hugs. Little did I know then that these people would become dear friends of mine. 

In fact, I had no idea quite what was going to be achieved over the next few years. Had I been asked, I certainly wouldn’t have been able to list all the things that have been achieved. 

But yesterday, something monumental was achieved in front of the nation and the world. Charlet Crichton took to the stand at the UK Covid-19 Inquiry to face questions on the mammoth witness statements she and 5 others formulated for the Inquiry.

Over 400 pages of evidence, testimony and overall bad-assery, was produced over the last 18 months. This alone has been a full time job for Charlet, who did this without question or complaint while juggling her own health issues as a result of the vaccines. How she’ll be able to escape an MBE after yesterday, I don’t know! 

When she sat there yesterday, oozing professionalism and composure, she articulately put across the concerns of the members when questioned. She batted down notions that none of us really know whether the vaccines made us sick – this one actually made my own bloody boil, but Charlet corrected this with such calm and composure. The last few months have been especially hard for our trusty leader, but she’s never once let up on the gas.

Yesterday was the culmination of all that hard work and it was an honour to watch her and be able to say, “I know that woman, she’s actually a great friend and inspiration of mine.”

I’m in awe of what this woman has created and achieved. I wasn’t there when she founded UKCVFamily, something that was created because while Charlet was suffering in the early days of her injury she saw a need among others to have a safe space. Putting aside her own suffering, during which she was helping with global support groups for vaccine injured, she created a UK safe haven. 

Of course there are others who joined her in these journeys, not least the other Trustees – Caroline, Brian, Claire and Sarah. The ones who have held each other up and kept each other going throughout all this work for the Inquiry, alongside all the other work that has happen to make UKCVFamily a charity, to gain huge support from MPs, to speak to the press, to support the other volunteers who help run the online support groups, to arrange regular meetings online with health practitioners for the members and produce advertisements to help let other injured and bereaved find us. Of course, I can’t not mention the other volunteers, like myself, who each play their own role in keeping the groups runnings, keeping morale up and keeping our members safe. 

That’s just a VERY short list of some of the things the team has achieved for this community. What they’ve done since the start of Module 4 I couldn’t even attempt to list. 

I’m in an incredibly fortunate position, in that I am surrounded by inspiring people. I’m in a doubly lucky position to be able to say I’m glad I was vaccine injured. You won’t hear many say that because none of us can ever be happy that this happened to us. But, had it not happened to me I wouldn’t have met Charlet. I wouldn’t have met the other trustees and found deep friendships among the other volunteers. I spent a long time not feeling like I belonged and not feeling like I was where I was supposed to be, and then I joined this incredible team and community who each day make me a better person, who inspire me to do the absolute best I can for this community and who hold me up when I am struggling.

But mostly, I will forever be grateful to say “I know those people, they’re great friends of mine and they inspire me.”

Please take a short moment out of your day to watch Charlet and her mic-drop moments from yesterday, even if you’re not injured. In fact, especially if you’re not injured.