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I’ve my 5th Covid vaccine coming up this week. 5th vaccine because I am eligible for the Spring Booster because I am severely immunosuppressed. Previously I had the usual first two Covid vaccines, then a special bonus 3rd primary because I’m severely immunosuppressed, then my first booster just after Christmas.

It is very likely – well almost certain – I will flare neurologically again after Covid vaccine #5. I have after the previous four Covid vaccines. If so that will probably wipe me out almost totally for another three months, starting about a week after my vaccine this week.

So this is probably my last week of a bit of respite – a bit because I am often waking up late afternoon even in this brief respite phase since the start of April after my symptoms finally eased after my 4th Covid vaccine in December.

I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My medics and I are agreed that I should keep getting vaccinated. My neurological flares I can recover from, even if it takes three months each time. It is also very likely I will get a 6th Covid vaccine in the autumn …

In no way is this an anti vaccination post. Vaccines save lives, and especially people like me who are severely immunosuppressed. I had a very poor vaccine response to the first two vaccines, but my bonus 3rd one (a special pre booster one needed because I’m severely immunosuppressed) gave me a healthy dose of antibodies, which could save my life. My first booster then extended that protection. Many severely immunosuppressed people have not had such a good response, despite loads of vaccines.

But the Covid vaccines take a terrible toll on me, because my auto immune neurological disease cerebral vasculitis is in my case so unstable. Each time I have a Covid vaccine I have three months of dramatically increased bladder incontinence, crippling headaches, sleeping up to 18 hours a day and phenomenal sedation even when awake, and appalling arm and leg control. It is amazing that I am not raging about this more. In my old consultant’s words I’m just too “phlegmatic”, which I eventually realised was a bit of a compliment!

I can access antiviral treatment if I catch Covid. I can also still access free testing to help me get treatment in time. What would really help though is to have the Evusheld preventative antibody treatment, which is designed to prevent severely immunosuppressed people like me catching Covid in the first place. But the UK government hasn’t bought any Evusheld yet, unlike just about every other comparable country.

Just don’t anyone say to me we are living with Covid, or even worse Covid is over, as a dental hygienist said to me the other week. I am getting through the pandemic, but at a terrible cost in terms of how the vaccines affect me. No way is it over for me, and many other people like me.

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Much of the current political discourse, especially in England, is about how Covid isn’t a problem any more, something we can live with. This is accompanied by removal of testing, so people will have Covid but not know. Likewise mask wearing isn’t being enforced, and many people stopped long ago. Note wearing a mask primarily protects others, not you, including the clinically extremely vulnerable you aren’t aware of just by looking at them. And this is all supposedly ok.

I’m one of those at greatest risk from Covid, being severely immunosuppressed for life, due to treatment controlling my incurable neurological disease and keeping me alive. I have been told very clearly by my medics that Covid could kill me and I must avoid catching it.

The first two Covid vaccines left me with very little protection against the vaccine. I am very lucky to have finally after my 3rd primary vaccine (an extra bonus vaccine given to the severely immunosuppressed in the UK) developed a good number of antibodies. But Covid could still potentially kill me, and I still need to avoid it.

I have been stuck in the house for two years, partly due to the risks out there, partly as my neurological disease rages. Both during the official shielding periods when I was advised by the NHS to shield, and after. The inequalities of so-called “living with Covid” are immense. It isn’t safe for me to go into a dining environment or coffee shop, or a general shop, or anywhere where people may be unmasked. Nor can I easily meet family or friends.

Yet even vaccines that may save my life have a high price. My unstable life threatening neurological disease has flared after all four past Covid vaccines. It takes me three months each time to recover. I have just about recovered from the December jab 4. I have jab 5 (Spring Booster) due any time now, which will almost certainly cause me to flare for another three months. But my medics and I are all agreed I need these vaccines.

It is no wonder I am so bitter at politicians and some of the public blithely dismissing Covid as a threat. If you haven’t lived in the shoes of someone extremely vulnerable, especially severely immunosuppressed, you can’t grasp what we’re facing, and why the risks are so high for us, especially now. In the last few weeks I have known many friends and clinically extremely vulnerable catch Covid. One friend with zero antibodies from four vaccines is fighting it now. The dangers to us are huge, but according to many politicians and the public it is just fine.

This post was prompted by a blog post from fellow academic Martin Paul Eve. He has even lower protection from the vaccines than me, and describes the situation he finds himself in eloquently.

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