When Everything Steals A Little Bit Of Your Health.

It's been a hard few months. I don't want this post to turn into a massive moan about how I'm not coping but what I've started to learn from these experiences.

When all the resources you get from your doctors is 'the importance of pacing' yet even though you religiously pace out your entire life, sometimes life has other ideas and you're physically unable to pace out your activities due to circumstances; what on earth are you meant to do then?

What even after all that, having to sacrifice your strength, your wellbeing, any improvements you may of worked extremely hard on, something goes wrong and effects you even more. Who is accountable for you having to enter a hell-on-earth flare up? It seems recently for me no one is accountable and I am left broken and resentful. It's hard enough having to navigate this planet in a body that basically just doesn't want to do a single thing it's told, then having to suffer a lot more due to people's mistakes; mistakes that wouldn't matter as much if I was well, but they do.

It's extremely hard to overcome these honestly soul destroying flare ups, especially when:
A) you didn't overexcert yourself due to you not pacing, it wasn't your choice and
B) it was doing something that wasn't even something you wanted to do.

The things to remember with a lot of chronic illnesses is that with each bad flare up, there's a possibility that you won't ever completely bounce back (it resets your baseline) and with an extreme flare up, again there's the possibilities that you just won't recover at all. These are quite scary parts of my illness that people don't really understand very well. People think it's fine that these things happen, it'll put you in pain, maybe bed bound for a day or so and then life goes on. This fairy tale doesn't exist. With any illness; you don't look after yourself you're going to get worse. This is something I've become scared of. The fact that I already feel like I am hanging onto my baseline with the tips of my fingers and I am one bad flare up from losing the little independence I have and really resetting my baseline backwards pretty far. I can just feel it in my body, it's hard to explain what that feels like but I am very sure of it.

I said at the beginning of this post that I wanted to share what I've learnt but it's not that much if I'm honest. I've learnt that it's healthy to have that break down; you shout, you moan, you have a good old fashioned angry-cry, and then if you're like me (aka British) you make a cup of tea and reflect.
Secondly I guess the real obvious one is to dive into your self care whichever way self care looks for you.
Thirdly, which I am TERRIBLE at (thanks anxiety) is to really let people know your boundaries and that you physically and/or mentally cannot take anymore and something has to change, if it's possible. If it isn't possible for the situation to change, find some coping mechanisms, or maybe someone can come and help you etc.

That's it, a very pointless post, but feelings I definitely needed to express into words so I could try and reflect, learn and do the best to my abilities to recover. Hashtag Chronic Illness Probs.

Images from Pinterest, artists unknown