My Desert Island

I had a massive flare up last week. It’s definitely the worst one I’ve had in about a year. There were three days in the middle that were particularly bad but it was a horrible week in total really. At times like that I can barely look after myself but I was lucky I had plenty of food in and I pulled the spare duvet in to the sitting room and got ready to ride it out.

I know some people will say this was the wrong approach to take and I should have got out walking or done something similar to relieve some of the pain and stiffness. The truth is that as much as this works some times, those of us with fibro are well aware that there are some flare ups that just have to be ridden out in a whirl of tablets, hot/cold packs, duvets, rest, bad television, baths, comfort and so on.

Alongside these treatments I also crave isolation. I put my phone in another room and lock the door to the outside world. A sense of isolation can be a horrible experience when I’m in the whole of my health but when I’m fighting a flare it becomes a goal for me. I don’t know if everyone with fibro feels this way, if it is a male thing or just something peculiar to me.

The reason I want this isolation is so that I won’t impose on anybody else. I imagine everyone out in the ‘real world’ is working away, looking after their kids, spending time with their loved ones. The last thing they need is me interrupting their ‘perfect’ lives with my moans and groans. I don’t want to go out and do anything, I don’t want to meet anyone because I don’t have the energy so I feel I have nothing to offer and wonder why they would even want to talk to me.

I know this to be absolute bullshit and yet when the time comes I still react in the same way. I know that every single one of my friends and family has their own issues to deal with and that unfortunately the perfect life doesn’t exist. I know that it is at times like this that I need friends and family to be there for me as I would be for them when they have struggles and yet I continue to isolate myself.

So why do I still act this way?

I’ve a few ideas about the reason for that and as I said it might be just a coping skill peculiar to me so let me know what you think.

I haven’t worked for just over a year now and I’m no closer to being in paid employment again than I was 12 months ago. I do a 3 hour volunteer shift on a Helpline each week and while I enjoy it, and wouldn’t be without it, it doesn’t give anywhere near the sense of accomplishment my full-time job did. As a result my self-confidence has ebbed away and sometimes the easy option now is to say no because that’s better than trying and failing. This becomes particularly true during a flare up as I can achieve even less at those times.

So rather than risk failing at something or calling my friends to report that I’ve nothing remotely interesting going on except that I’m in a flare, I run away. I lock out the outside world and discard my phone so that I can isolate myself. This way I won’t let anybody down and I’m protecting myself. This can’t continue to be my long-term plan as I’m sure is neither healthy nor helpful to act this way.

The reason I’m putting it on my paper like this is my way of apologising to friends and family alike for the times I seem off the radar and disappear into my safe cocoon at home. I’m sorry for the times I don’t contact you and it’s something I am trying to work on because I’ve got amazing friends here in Ireland, across the water and across even more water on the other side of the world. I care about each and every one of you and I’m trying to modify my coping skills so that I can ride out a flare while also staying in the moment and being there for you. I must do this because everyone has their problems and issues and I can’t let my hurdles interfere with helping others over theirs.

I’ve just re-read post and while it might come across as a bit heavy, that is certainly not my intention. All that happened was I noticed a coping technique that I use in a flare and I don’t think it is very healthy to continue with it. So by putting it in writing and letting you know about it I’m hoping that the next time I have a flare up I’ll recognise it and reach for help rather than isolating myself further.

On a more upbeat note, the JA Family Day is just a few days away and Fibrofella is looking forward to meeting all the Irish families who have a child or children with Juvenile Arthritis or Fibromyalgia. I have my superhero costume ready to go and I’m looking forward to sharing some positive stories with you next week.