I have to admit I’ve been quiet of late, in part because I don’t know what to write about. But also because my life has become busier; more people at home more often, more housework as my Mum continues with caring responsibilities and more cancelled appointments to keep track of so that I know what to chase once hospitals return to more normal service. All of that uses more energy than usual.

There’s also a lot to be said about the uncertainty and anxiety that comes from living during a pandemic, that uses energy too. I never know what to post; should I try and be upbeat which is how I usually try and remain as much as possible? Or should I post the God honest truth of things?

Well this post is going to contain some of the latter, because I need to spill it out somewhere and here seems as good a place as any.

Like so many people, I found 2020 to be a hard year. But, I suspect I’ve found it hard for some very different reasons to most. I’ve essentially been shielding since March; not officially mind, and for the most part not by choice either. I’ve been “lucky” enough that my health has been so unpredictable, and at times poor, over the last 9 months that for the most part leaving the house hasn’t been of interest to me. Because quite simply I’ve barely felt well enough to be in the garden some days, let alone further out of the house. I’ve been out about 7 times since March, between August and September I think, and two of those were trips to hospital and emergency dentist.

Managing my medication during this pandemic has become something of a nightmare. I dread each time I have to request a prescription because it seems almost inevitable there will be a problem somewhere along the lines; from the doctors surgery claiming they can no longer prescribe something, to pharmacies requesting I change medication to something totally unsuitable and beyond. I’ve had to change one medication three times since the beginning of this pandemic due to shortages in supply, and each time it was changed they tried to swap it to something that does a similar job for its most common use, but not the job my consultant had prescribed it for so I had to do my research and put up a fight.

It probably won’t come as too much of a surprise that most medical professionals don’t like it when you know more about your condition and how it’s managed than they do.

I’ve also had to change pharmacy three times during the pandemic; each one I’ve been with has been unable to get one of my medications (a different medication with each pharmacy). And even now there are delays in getting some of them, but my current pharmacy has (thus far) managed to supply everything I need. So fingers crossed that’s one problem solved!

2020 started holding so much promise of progress in terms of learning more about how my body is (or should that be isn’t?) working, and trying things which could help get symptoms better controlled, thus improving my quality of life.

I know we are in unprecedented times. I know the NHS is under an enormous strain. But I have to admit with each cancelled appointment, with each referral (made before the pandemic began) I haven’t heard back about, a little bit of hope slips away, and bleakness slips in. How long will it be until I see one of my doctors again? How long will it be before we begin to understand just how my body works (or how it doesn’t work)? How long will I just exist here, with returning symptoms and worsening pain levels putting off trying to contact a doctor because they’ve probably got more important things to be doing or are probably overwhelmed with other patients for me to bother them with something I’ve actually had before, even if it hasn’t been this bad for a while?

That’s not to say things have been all bad on the medical front; one of my consultants has been working together with my general practitioner (GP) and I’ve started new medication to help manage the fainting and dizziness a bit better. And I’m happy to say that for the most part its working well. I still have bad days, or even bad weeks where I get dizzy very easily, but its nowhere near as frequent as it was before.

The only downside is it suppresses my immune system. I don’t quite know what that means for me when it comes to my risk of catching viruses and infections yet. I was hoping, given the current situation with the pandemic, I’d have been given some additional information about that, but alas thus far that hasn’t happened. Not that I suppose it matters too much anyway because as I say I’ve only left the house a handful of times in the last 9 months, and we’re employing our usual winter hygiene methods year round; I say usual because we always have to be extra careful during winter as I frequently pick up any bug that’s going round, doesn’t matter if I haven’t been out, no one else in the house has had symptoms or not, I’ll get it and it’ll knock me for six. Plus of course now my family are using masks when out and about as the guidance requires them to.

Despite all this, I’m still plodding along quietly. Drafting new posts for this blog as and when I’m able to, pottering about the house doing the little tasks I can to help my parents out, keeping my physiotherapy up as much as possible and generally keeping track of everything that’s been put on hold due to the pandemic. But quite honestly I’m getting fatigued more easily than I was, my pain levels are higher than they were and keeping everything going is getting to be a little bit too much. So things might be quiet here for a while, until I manage to figure out the new balance of things.

For now, stay safe and keep as well as you possibly can.

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