Fear is hard to talk about here.

There’s a brigade of ‘hashtag inspirational’ people who I have witnessed ridiculing others for bravely admitting there are scared about reintroducing something into there life that they had reacted badly to before, for example. Rather than be offered support, I’ve seen others be berated for feeling fear because “the body can’t heal when it’s in that state”. Can we just stop for a moment and allow people to feel however they feel without judgement or preaching?

So, fear is hard to talk about, but I’m going to do it anyway.

I pay for almost every little thing I do. And recently that’s making me not want to do anything at all. I am scared of the fallout that might come.

What my body can manage can change every day & it makes it hard to know what is sensible to do & what is asking for trouble.

This is something I haven’t felt in a long, long time. I used to get so much joy out doing what I could do, that it mostly outweighed the aftermath. Relapsing* & being at this lower level of function again has knocked me back in more ways than one. I’m very much back to the drawing board & relearning how my body reacts & copes at this level of severity.

Since I have started to make progress post-relapse, we’ve noticed that I say “No” to any Almost-Anna-Friendly suggestion my husband makes at the moment. Board game? Crossword? Short drive to see the river? Wheel around the block?

It’s often partly because I might have something in a weeks time that I need to be okay for. My current recovery time from things I hadn’t expected would exacerbate my symptoms is disheartening.

But the truth is, it’s mostly that I am terrified of how unwell I can get.

Still, I miss out on so much already (because of what is physically beyond my limits) that I don’t want to start avoiding doing lovely things because of the payback. So I’m working on it & trying not to beat myself up about it in the process.

*I never made enough progress to work or live independently but pre-relapse I could use my mobility scooter once a month, potter about the house, drive short distances (my record was 20 minutes) a few times a month, and have visitors a few times a month.

Published by Anna Redshaw

Blogging about life in the slow lane with an invisible, chronic illness. I wasn't always a sick chick so this is somewhat of a life changing experience!

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