Wednesday, 17 February 2016

Hiding away, dealing with pain

I've never been one to post pictures or blog when I am having a bad day. I like to share positive things, and to be able to think clearly before finalising things. I do write about bad experiences in hindsight, but usually only once I am over them emotionally. 

Especially on social media, it is common in the chronic illness community for people to share pictures or words when they are having a bad day - a selfie of them looking sad or a picture which sums up the bad day that they have had. I'm not writing this out of judgment of the people who do this. It is a strategy that works well for them, and is part of the chronic illness community. I admire the strength of those who choose to be vulnerable at their lowest - it has been very helpful for me at times to witness other people going through the same thing as me.

I have tried sharing on bad days a few times, but each time it always leaves me feeling more negative than I did to start with. Somehow having other people acknowledge my situation confirms that it is actually happening. This gives it more power over me, and gets in the way of my pain management. I choose to work through things on my own in the ways which work best for me. For some people sharing works and I'm fine with that!

Often when I am out in my wheelchair and am feeling worse for wear, I don't want to be seen by anyone I know. It's not because I'm ashamed of the way I look or my wheelchair. Stopping and talking to people interferes with my way of dealing with bad days. I also don't want to talk because if I am having a bad day I don't have time to socialise, I can't idly chat and pretend that I'm okay. I'm out because I'm on a mission, I have a job to do and when it's done I will go home and go to bed.

When I bump into people I just want to ignore them, I realise that I am very rude when I am like this and I feel very bad about it. I am a happy person, and I like people. You would think that after months of not seeing someone who I care about, I would be over the moon to see them. Instead I feel caught off guard with the overriding sensation of 'now is not the time'. With chronic illness you are in a constant state of 'now is not the time'!

People are mirrors,they reflect how we are feeling back at us, sometimes that involves pain. They ask us how we are, and we answer. The better they know us, the harder it is to hide. Having someone who I know see me in pain reflects that pain back at me.

I do of course love seeing my friends when I am able to, usually a few times a year. With chronic illness preparation is the key. Careful planning and resting beforehand are required to ensure that I am well enough to enjoy myself.

Do you ever feel trapped when you see people out and about? How do you explain? How do you deal with pain best?

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