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?

Tuesday 2 February 2016

The reality of blogging with M.E.

I love my blog, but you might have noticed that I haven't been updating it very frequently recently. It is not because I have run out of things to say, or lost interest! It is because my most severe symptom of M.E. is brainfog. I find it very difficult to read and write, processing words and conveying ideas can be extremely difficult for me.

I am continually starting drafts for posts or thinking through ideas that I would like to share in my head. But getting them written out in an orderly fashion is almost impossible sometimes. There is a lot that I would like to say, and as a chronic illness blogger the irony is not lost on me that I am often too unwell to keep up with my blog! It can be incredibly frustrating having things to say but not being able to express them.

Blogging is a form of therapy for me, it helps me work through my issues, and has proved to be more beneficial than I had ever imagined it would be. Without blogging I find a growing sense of discontent and tension, I need to wok through my thoughts, and I need to be heard.


This problem affects me in my personal life as well. I am isolated by my illness and only able to see friends a few times a year. We make up for this by staying in touch via social media, text and occasionally Skype or phone calls when I am well enough. I find it very difficult to compose messages and exhausting to complete them so that they don't have any errors. My goal is to reply to each message I receive within a month, but unfortunately that is not always possible. To give you an idea of how infrequent my communications are I often prioritise blogging over replying to individual friends as this way I know that I can reach many people at once! Most of my close friends read my blog, it is a great way of making sure that everyone is on the same page, but obviously not ideal!

The subject of brainfog has been on my mind for many months now. I have never considered it to be something substantial enough to write a blog post on; however it affects me every day and is a massive part of my life. Brainfog is a very hard thing to conceptualise, it is difficult to talk about and difficult to describe.

Do you have any experience of brainfog? If so how do you cope with it?