My memory of Christmas day 2020 was being woken up in my hospital room, being helped upright by the nurse, feeling doped up and vomiting because it was the first day on a new drug, and it was not agreeing with what was already happening in my body. I was now done with telling people I was in deep trouble and needed help. I went into submission. I had been completely bed ridden for four months and unwell for nine. I was in a psychiatric hospital during my first week of a section order. I was taken in there, in a wheelchair. I firmly believed that I had an aggressive form of pulmonary arterial hypertension caused by endothelial damage after my own process of elimination based on everything I had suffered and inconclusive tests, knowing absolutely in myself I’d been through hell in my veins. I left six weeks later, in much better health, my weight regained, and walking freely again. I was completely broken by what I had been through. Despite all of my pushing for a hospital bed elsewhere there was nothing that could have been done for me, and a place of deep rest, some gradual mobility, and a lull into acceptance of whatever was to come contributed to my recovery.

You learn a lot about yourself when you have time to examine every small detail of every feeling you felt, not just the deep physical suffering, but going over the things that were the most traumatic that you had no choice but to go through, the things that were demeaning, scary and hard. Calling an ambulance, again, explaining what is happening to you, again. Sitting in a waiting room and seeing other patients being treated while feeling like a naughty child when you can barely keep yourself upright. I felt like I was being dragged into another dimension to everybody around me. My suffering was somehow invalid until a doctor could validate it and there was a lesson in that itself. Seeing the difference in response when you need to be pushed in a wheelchair when there is a nurse who has seen your results and the one that hasn’t. You are either somebody with a serious mental health problem, or you are somebody who really struggled to get from one place to another; I was the latter whilst becoming the former. It was a crash course in learning how to accept judgement. I was having to swallow being perceived as a complete time waster, but knowing if they could just spend a minute inside my body they would absolutely know that something was very wrong. I had always trusted life’s timing, but I found myself pushing against the tide instead of trusting the flow. But my survival instinct had kicked in. I wanted to live, when I felt I was going to die.

It all started in March 2020, just before the very first lock down. It came on with an intense burning and tightening feeling in my lungs that felt very sinister. The new covid virus was all in the news, so I was baffled but relieved that I seemed to be the only one affected by it considering how many people I’d been in close contact with. My son had a short bout of the flu running up to it with a lack of taste and smell – a symptom that became recognised later. It dawned on me that the last time I had been to see my doctor in 2019 it was discovered that I had extremely low vitamin D levels and slightly low ferretin, and I had done little about it, and we’d again been through the darker months, so at that point I started popping supplements and making changes to my diet. The government was telling us not to overwhelm the hospitals but I was concerned about the intensity of the waves of burning. I answered the questionnaire on the NHS website, but guidelines were to stay home, and there was no covid test offered to me. Two lots of antibiotics from the GP, and still this intense burning came in waves and went on for weeks, then when the waves did finally end, I felt something was happening with my heart and the A&E visits began. It was the start of a rapid downward spiral and a snowballing of events. August my family funded private tests as it had begun to feel impossible to even walk my dog. I was on a beta blocker by now and even though it had eased my episodes of tachycardia there was real pain and struggle, I now felt like my chest was being crushed every time I walked, plus what felt like a surging of blood into my left arm and a tightening into my neck and base of skull. September 2020 I was completely unable to care for myself and I had to leave my home to be cared for by my family. It was like being trapped in my body. I felt I was suffocating, but not in a way that could be resolved by taking deep breaths in fact the more stress I put on my lungs the worse it felt, so I could do little but lay still. My SATs were normal, I felt extreme pressure in my chest, neck, jaw, head, shoulder, left arm, sometimes right, and a buzzing all over my body. My chest and upper back felt like pins and needles were running through them and a feeling of being fragmented. I was certain from what I was feeling the damage to my vessels was exactly where all the burning began back in March. I was feeling it and living with it but I couldn’t prove it with scans, blood tests, ECG’s. Death felt like a kinder option and every time I heard the trains go over the level crossing I contemplated being on the tracks, but my overwhelming will was to live and have my old life back with my son. By this point I had become so irrational feeling I couldn’t prove what was happening to me, My family were at a loss at what else to do for me. They did everything they possibly could and I caused them a lot of distress too. I began pursuing the hospitals for an impossible pulmonary right heart catheterisation and even refused to leave the hospital. In hindsight I wish I could change that, but at the time I lay there feeling it was my last chance at life and that was very real and horrific ordeal for me. As December went on my physical symptoms were becoming much more bearable but I was to terrorised to acknowledge that for what it was. It was time to get up and start taking things slow, but instead I used that strength to sit in a hospital waiting room again and again and again… and so they intervened, and the final 6 weeks of my recovery were spent in a psychiatric hospital; a place I look back on with a strange fondness. The kind nurses, the doctor who had listened to my sister explain who I was prior to this illness and just how unwell I had been and what affect that had on me. The doctor handed me a long covid list of symptoms around the time I realised I really was healing, it was an umberella term I was not willing to accept until I knew I was going to be okay. At the end of January 2021 I was home. I’d also just finished a two week quarantine after testing positive with the virus which barely touched the sides in comparison to what I’d been through in the previous nine months.

February 2021 snow came and I stepped into my garden one evening and stood barefoot in the snow looking up at the moon and feeling so alive. I hadn’t enjoyed being outdoors for six months and it felt brand new. I couldn’t believe what I’d endured was over. I was in awe of just how amazing the cells in our bodies were and if anybody even doubted what I’d been through, I didn’t care at that point, as long as it was over. I even brushed over it when I had a follow up call from the mental health team and they mentioned a functional disorder, I just thanked them and let it go. I wasn’t about to start trying to change peoples perceptions anymore. I just wanted to get on with life and try and move beyond my ordeal and begin what felt like my second shot at life.

Sadly my barefoot in the snow feeling was short lived. I made the big mistake of not following my gut instinct and I had the vaccine in March. I regretted it deeply. Severe body aches, a feeling of dehydration in my head and shortness of breath on day one and two. I felt I had done harm to my delicate new cells. The side effects stopped and I hoped that was it, but two weeks later I had a short burst of strong palpitations out of nowhere, and four weeks, post vaccine, I felt my body was back in 2020. I’d relapsed. I was devastated. This time I was going to trust my body to sort itself out but it was a blow beyond comprehension. Would they look back and decide I had a functional disorder? Would I end up with my medical autonomy taken from me again? I decided to go this one alone. There was no way I would have the second Jab. I thankfully never got to the severity of September 2020 and I was a lot better without any medication. I had enough physical ability to slowly move through it and things have improved as months have gone on. I joined a long covid group and there was some talk of mitochondria in endothelial cells being damaged by spike proteins, but throughout this group were people pretty much dealing with their illness on their own and not getting anywhere in hospitals, giving me confidence in my own understanding of what had happened to me in 2020. I also joined vaccine injury groups and they also talked of spike proteins causing damage, but the science behind this wasn’t being allowed and groups were shutting down and peoples opinions being censored. I however trust the things I read that align with my experience. I could see the similarities in what people were suffering in both groups. I was thankful that my two experiences had the recovery time in between so I could decifer the two and make the decision never to have the vaccine again and to take the very best care of my immune system. I also realise my experience has told me I cannot force people to change their perceptions of what is happening to me or in the world, as much as I may want to, especially if the information they have in front of them says other wise and it doesn’t show everything that is going on.

I will say this about freedom of choice; While I had my medical autonomy taken away from me in December 2020, what if I had been forced to take the vaccine then? I am sure I would not have healed from my first ordeal and I would have been stuck in a spiral, suffering physically and mentally, never knowing that my body was capable of great things.

I will have my barefoot in the snow day again. I have come on leaps and bounds in the past months but I’m not quite there. On the outside I appear pretty normal but I can’t go beyond a walking pace without my symptoms and I still can’t dance beyond a gentle hip shift. Every day is a struggle. This time however I do my very best to choose hope over fear. A game changer.