When you remember how different your normal is...

I do know that my normal is different to most people's. But it is so normal to me that I forget.

The other day I was chatting to someone who's been working alongside me at the Hypermobility Syndromes Association for the past few years. They commented that when they first got involved with the HMSA and watched a recording of my patient perspective talk, they were shocked at the symptoms I live with.

And it...well....I suppose their shock shocked me. 

These symptoms are my normal. They've built slowly over time. My life has evolved so that it works with my symptom patterns and management needs. 

I don't consciously think about my symptom management as an issue very often - like most people don't consciously think about the effort of having to put their shoes on before leaving the house. It's just something that you have to do as a routine part of normal, it might be inconvenient or take up time, but it is still unremarkable routine.

I have a life I can live that is fulfilling and rewarding. I have developed some pretty good pacing and self management skills over the years but this doesn't mean I can live anywhere near 'averagely'. 

Commitments are always made on a flexible basis. I often pencil in possible events or activities but don't promise until the last minute. I say no to a huge number of things. I get help. I almost never cook - and when I do it's usually things other people count as 'cheating' (pre-prep, oven ready etc). At certain times of the month, or when I know symptoms will be bad, I book sick leave in advance. I take 2 hour lunch breaks so I can rest and digest. I am used to loosing my words. I nap after videocalls (although 'pass out' is sometimes possibly closer to the truth). When setting deadlines I add in at least a week to allow for time off. I never commit to things 3 days in a row (and 2 days only in exceptional circumstances). And this is only a fraction of my normal which I know isn't average normal.

The main reason I'm generally pretty good at sticking to my management techniques is that everything goes very wrong very quickly if I don't. If I dropped all my coping strategies I'd probably be hospitalised within a week (a quickly typed phrase that I don't want to think about).

So yes, I suppose my symptoms are pretty major. And in a way it shouldn't have been a big shock to hear someone say they were. I mean, wheelchair use isn't exactly a subtle indicator that my symptoms have a big impact on me!

But on the other hand, I'm kinda glad it was a shock. Because it means that my life genuinely works for me.

The outcome is that I feel a strange combination of unsettled by the reminder that I am severely affected by my conditions, and extremely grateful that I have been able to find a life that works for me.