Tuesday 29 September 2020

song for a future generation

I am tired, I am afraid
My heart is full of dread
"Soldier" by Richard Dawson 
This was the unnecessarily "on the nose" soundtrack to my last #tysabri infusion which was no fun at all. It was so long ago, I'm almost ready to go back for my next one. 

I started writing a blog post during that infusion but it was so whiny and angsty that I decided to shelve it until the moment passed. 

Obviously I'm still waiting. 

In a sense, life is - for everyone - an endless, perpetual NOW. Things change and they stay the same. Rules change, restrictions are lifted but the results are the same. 

Life seems to have returned to how it was in February / March. My sleep has certainly returned to how it was then - sporadic and unsatisying!

A complete lockdown seems inevitable so we're stealing ourselves. We're trying to stay abreast of the developments but also trying to stay sane. Keeping things light for our daughter but preparing for when everything changes again. 

I can't help feeling that there will be some kind of global outbreak of post-traumatic stress if/when this ever ends. Yes, my flippant response to anyone asking me how it has been for us is, "Well, I don't go out that much so no change there". 

But really, the first lockdown came at a time when I'd got a little braver at taking risks. Longtime visitors will know that my self-confidence has taken a battering over the years, as my mobility has gone south.

(This is not a situation which is unique to me, obviously)

But at the end of 2019 and at the start of this year, I had been getting better. At leaving the house, at taking (small, calculated) chances. And in the last month or so I've been made aware that I've reverted to my past bad behaviours. Staying in whenever possible and having mild panic attacks whenever I do leave the house. And freaking out if things don't go to plan. 

The pandemic is an exhausting situation for everyone but surely it has to be particularly bad for anyone living with some kind of chronic illness. Not least because of the fact we're seen as canon fodder or collateral damage. 

And all this is even without considering the utterly terrifying prospect of Long COVID

But at the same time, we've seen that accessibility IS possible. More and more events have been streamed online. Working from home has been normalised. For god's sake, even my mum and dad are doing their grocery shopping online. 

With the emphasis on getting back to normal, going out to work and supporting the economy, are things eventually going to revert to how they were?

Maybe this will be the lasting trauma from COVID for the chronic illness community. The memory that there was a time when events were accessible and remote working was encouraged. A time when the general populace had a little insight into the fears that disabled / chronically ill people have lived with for years.

That your continued good health is not a god given right. That no-one's job is secure. 

After all that, it would be terrible if everything just returned to the way it was before. 

I am tired, I am afraid
My heart is full of hope
"Soldier" by Richard Dawson


  1. On a similar note, it's been amazing how quickly societal norms have changed. Not so long ago, it was weird and vaguely insulting to see someone wearing a mask on the bus; now it's essential and frowned upon if you don't wear one (don't get me started). What this tells us, apart from anything else, was all that the fuss about face coverings a while back really was just racism. It's also amazing, as Johnson tries to blame people for not obeying the rules (haha!) how the Great British Public has actually been incredibly compliant in the main. And they're not just doing it for themselves either: there's a genuine air of keeping each other safe, which is lovely. We tend to focus on the arseholes, but I'm trying to hang onto that too.
    Stay safe, my friend.

    1. Cheers Swiss! We should really focus on the good ones and there are a lot of them about, especially now - it's just such a shame that the arseholes do make it their business to draw attention to themselves!
      Keep on keeping on, chief.