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Archive for May 9th, 2012

I recently found a book on chronic illness called ‘Sick and Tired of Feeling Sick and Tired‘, that I started years ago and never finished because I was quite well at the time. Picking it up now though, I’ve found that it has really struck a chord with how I am feeling at the moment and it has helped me to understand a few issues that have been a cause of frustration to me. Understanding is the first step in accepting and managing such issues.

The book is aimed at people with a range of Chronic Invisible Illnesses and although it doesn’t specifically mention Still’s Disease (surprised?!) or even RA, you would definitely recognise the majority of what is discussed, if not all of it. It gives some advice on how to combat the ‘bad’ thought patterns that make dealing with chronic illness even more of a challenge than it needs to be, with a range of simple techniques that you can practise. Not that it all boils down to thought patterns and so forth… but a lot of it really does make sense. I found myself folding the corners (tsk) of useful pages that I know I will want to return to again and again.

I’m also wondering if it’s worth encouraging the people close to me to read through it, to try and give them an idea of what goes on in our heads whilst dealing with all this. I often feel ‘judged’ unfairly, or that people don’t quite understand some of my actions / ways of dealing with my illness, so maybe this is one way to give them some insight into what it’s really like. Seeing some of my own thoughts and actions written down in a book was comforting – I found myself wanting to point at certain sections and shout -‘see it’s not just me!’.

I thought I’d give a heads up to people because it’s definitely worth a read, especially since it is easy to read. Just being able to recognise much of what is discussed in the book made me feel calmer and more at ease with my dis-ease.

I picked up a used copy from Amazon for around £3.00 (inc postage) so it won’t break the bank either.

Let me know what you think if you get hold of a copy!

L

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Like somebody flicking a switch, the Prednisolone withdrawal hit me yesterday, out of the blue. I’d woken feeling fairly okay but by the afternoon my chest had tightened, breathing felt difficult and I was edgy, fighting the constant urge to cry. I tried to distract myself but couldn’t focus on any of my usual pasttimes, not even reading, and so I made the decision to do something I very rarely do, which was to bury myself under my duvet and sleep.

I say I rarely do this; that’s because my GP told me to try and stick to a regular sleeping pattern by not taking naps. However, I think sometimes our bodies need the extra sleep to heal and this was one of those times. My heart pounded as I lay there and I felt so weak that it just seemed that sleep was the only option, so for once I didn’t fight it or worry about what I should or could be doing. I think I slept for three hours, if not longer; but do you know what, I woke feeling better than I had done earlier. I’m not saying that all the unpleasant feelings went away, but they lessened and that was enough to get on with what was left of the day.

This reduction has been smaller than the previous ones (only a 2.5mg drop), and I’m hoping the side effects will be less too or at least more short-lived. I’ve explained things to my boyfriend (so that he doesn’t think these sudden urges to cry over nothing are anything personal!) and he helps to remind me that it’s temporary and how well I’m doing, so that I don’t lose sight of reality.  It’s useful to have a ‘light at the end of the tunnel’ too, which in my case is losing the Pred cheeks, as it does keep you going. If I didn’t hate Pred so much, it would be much harder to taper down; thinking about getting my cheekbones back and my body deflating, is a massive motivation – especially on those nights when I have to get up for the loo four of five times – oh the joys of water retention!

Anyway, today has been better still, but I’m going to take things one day at a time and if that means a day in bed, then so be it… for now at least.

L

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