Saturday, 23 March 2024

I slept through the night. It's a beautiful, sunny spring day. And I awake utterly exhausted.

Yesterday I awoke exhausted. And the day before that.

I've done nothing physical to bring this on — utter exhaustion is the main effect of my auto-immune condition, and it halts my life in its tracks. I used to live my life; I now just exist, the days moving past me, always falling behind.

I must stay on top of: cooking; getting groceries; bill-paying; laundry, washing dishes; urgent repairs & house maintenance.

I try to keep pace with: pilates classes (to stay mobile) and the occasional film (to stay sane).

But of the things I can no longer manage, there are too many to list.

My exhaustion is from a condition called ITP* . It leaves me utterly depleted but when people see me — up, dressed, looking passable, sounding fine — they don't see my exhaustion so when I tell them I'm exhausted, some of them think I'm just not trying hard enough.

ITP exhaustion isn't caused by intense physical activity or lack of sleep. And it isn't cured by long naps. For most of us with ITP, exhaustion becomes our permanent state, and when I do exert myself by, say, standing a long time cooking, my energy the following day is typically much worse.

Most people's platelets are between 150 and 450, and their energy levels are fine. My last platelet count was 31. The time before that it was 22. My energy levels are not fine. When I get ready to go to pilates, some days I've barely the strength to dress, let alone walk to the bus stop.

There is no cure for ITP; the most we can hope for is a long period of remission. There are treatments to help raise platelets, but they come with side effects which, for some of us, are stronger than the desired effect of raising the platelets. You can decrease the dose to minimise the side effects, but then you also minimise the desired effect, so you're back to Square One.

I'm reluctant to try a new treatment because if I can't cope with its side effects (which was the case with Romiplostim and also Mycophenelate mofetil), then that's one further option that's no longer available to me. There's a big psychological difference between thinking you have other options available, and in knowing that you don't.

So I carry on, pushing myself from one day to the next, trying to will my body to correct itself. I'm currently on 175mg/day Azathioprine (immuno-suppressant) and, as kiwi are thought to help raise platelets, I try to eat 4 a day.

A drop in platelets is a known side effect of many vaccines, but no one told me this when I had my flu vaccine in November 2019. Automated texts that prompt you to come for a vaccination are triggered when the vaccination programmes are ready to begin — they are not linked to one's medical records so there's no accompanying text warning ITP patients that their platelets might drop significantly after a vaccination. And there's nothing advising people who are feeling very tired, to first have a bloodtest to ensure their vaccination can be as safe as possible for them. Two days after my flu vaccine, my platelets were 36; eight weeks before, they were 108. So a big drop in a short time.

For the past year, my platelet levels have remained stubbornly low. So I don't risk lowering them even further with vaccinations & boosters, where they could drop to just 1 or 2 platelets. It's hard enough trying to raise my platelets from their current low levels. So I have not been vaccinated, due to this risk.

Before we had Covid vaccines, we were told that we'd need to learn to live with Covid. But now we have vaccines, and any helpful information for people like me on how to safely navigate our lives — unvaccinated in a now mostly vaccinated world — has disappeared. In the absence of this information, I wear facemasks: on the bus; in pilates class; in the cinema; and I keep a distance from people, as best I can, and try to stay near where fresh air is circulating.

Last week on Women's Hour (18-March-2024), I heard this issue being discussed and they invited people to join the discussion. I texted the following, and they read this out:
Thank u 4 acknowledging that some of us cannot b safely vaccinated, & 4 asking how we r.
I wait 4 warm days so I can safely share a meal outdoors with a friend.

Two days later I went with a friend to a cafe that I knew had covered outdoor seating but when we got there, found their back garden was roped off, under construction. They had indoor seating but all the windows were closed, and the room was filling up. It had a high ceiling, and the door to the room was open. Is this sort of environment safe for an unvaccinated person with ITP? Living with very low platelets and chronic exhaustion is crap but I am ever aware that, were I to catch a bad dose of Covid, it would be much worse, so I do whatever I can to avoid contracting a virus (or the next Covid variant). But where do I find the current information to help guide me? In the end, my friend and I sat outdoors in a light drizzle, at a table without an umbrella.

On Jim Al-Khalili's The Life Scientific on the 12th of March, he interviewed Sir Jonathan Van-Tam, deputy chief medical officer during the Covid pandemic. Sir Jonathan touched on the subject of fine particles in the air versus big droplets but I was left unclear as to which spreads the virus/variants, and how best to avoid becoming infected. I would like to know what the advice is for those of us whose main defence is facemasks, distancing, and ventilation. If I knew how to safely navigate my life, then I'd know what questions to ask before attending a venue, and bits of my old life might be able to return. (I would love to be able to safely swim again, but with swimmers going past me, blowing out their breaths at me, is this safe? Doesn't seem as though it would be.)

Much is made in the media regarding how best to tempt people back to venues that they used to attend before the pandemic. I think that giving people proper advice on how to stay safe, would be a big help. (It might also relieve some pressure on the NHS.) In the absence of any proper advice on how to keep safe, many — especially those who've been through a severe bout of flu or Covid — simply stay away.

And for people who don't know that their platelets are already low, they'll be unaware that they're more vulnerable than others. They won't know that, for them, a bad dose of a virus or Covid — or a flu jab or Covid jab — could trigger the start of ITP. It would be so helpful if epidemiologists were again tasked with advising us on how best to stay safe. Simply telling us to get vaccinated is not a one-size-fits-all solution. After all, of those whose ITP was the result of a vaccination, how many might have been spared this diminished life had they been advised before being jabbed, to get their bloods checked first? That's a lot cheaper than our NHS Haematology departments dealling with ever more ITP patients.

If anyone can point me in the right direction, to the web site that carries current advice on how unvaccinated people can best keep safe from catching Covid, do let me know.

*Immune Thrombocytopaenia Purpura (low platelets)