This week with CFS

It’s been a strange week, not gone to plan at all!  I thought I’d tell you a bit about it and explain a bit too about the illness I have, so you can understand what life is like for me and others with chronic illness.

The week started well, my Mother in Law came round and helped me to bottom out my bedroom, we cleared out my chest of drawers and wardrobe and got 5 bags of clothes ready to send to charity!  Wahoo!  I love decluttering, I have way too much stuff and was really pleased to get rid of so many clothes!  My bedroom is much more pleasant now, no more piles of clothes lying around as I had run out of storage space!  I’ve also put things I use regularly much closer to the bed, which makes things a lot easier for day to day life.  When my illness is bad I can’t always walk round the bed to rummage through the chest of drawers, which was another reason why I had piles of clothes near the bed.

I expect some of you know, but I have Chronic Fatigue Syndrome (CFS).  This means that I’m quite limited in what I can and can’t do, quite often I won’t be able to go out and have to stay at home as don’t have the energy to leave the house.  This week has been particularly bad, I don’t normally have to stay in bed all day but I get quite a lot of pain and this week hasn’t been good.  I’m learning to cope with it and think ahead a lot about how to make life easier, for example doing things before bed to make things easier in the morning – my worst time is just before breakfast – or taking things from room to room when I’m going there anyway, not making extra trips to other rooms and so on.  Sounds obvious probably, but it’s helpful to me to work out ways of doing things that save energy but still get as much done as I can.  Poor Tim, my husband, does have to bear the brunt of the cooking and cleaning unfortunately, he’s a star and helps me loads.

I found this yesterday and really love it, I think this may be my new motto!

1o

Distraction is vital!  That’s why knitting is so good, I can do it sitting down, and it keeps my mind off things.  This week I’ve not done as much as I’d wanted but I’ve done a bit of work on a sleeve of my jumper commission.  Nice wrist stripes aren’t they!  I’ll sew in the ends at the edges so the gentleman can turn back the cuffs if he wants and still have the stripes showing without lots of ends showing – if he’s like me, I like the turn back the cuffs of my jumpers or cardis when I’m washing my hands or doing something that might get a bit messy! (sorry about the photo, I can’t find my camera so took it on my rubbish phone camera, the colours are much richer than this)

Created with Nokia Smart Cam

Recently I’ve been doing more to personalise my clothes.  I’ve always loved clothes but sometimes the ones you can buy just aren’t quite right.  For example, this summer I couldn’t find tops in colours I liked so got some white ones and dyed them in pretty pastel colours.  The pale purple one in this picture is one I dyed, and I took this photo as it was a cold day, I was wearing a long sleeved spearmint polka dot top under it and I’d had an apron on (it’s double sided so I folded it so you can see the pink and blue sides at the same time) and it just all looked quite pretty together!011

I’ve done a fair bit of dying clothes, doing it in a machine is so easy, you just chuck the dye in and the clothes and put the machine on and voila!  It comes out all pretty colours!  I just ordered a new brand so am looking forward to that, I’ve used Dylon a lot and love how easy they are to use and they are so reliable, but wanted to try a few different colours so have just ordered a brand I’ve not tried before, will be bleaching and dyeing a skirt for autumn and winter and see how it turns out, I’ll make sure I show you that!  I’ve also been thinking about another skirt that I might have to do something with, the colour is fine but I might add a few sequins or ribbon or something.  So that keeps me entertained too!

Some of you may not be familiar with CFS and not realise that it’s not just tiredness.  I have pain, nausea, lack of concentration, find it hard to control my temperature, and I’m very sensitive to light and noise too.  Here is a useful site that explains more about it if you want to learn more http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Symptoms.aspx

The main thing is, we all have things we have to deal with.  This is mine, and I’m learning to deal with it better as it goes on.  I wanted to explain about it so you understand what I mean if I mention it later in my blog or if I can’t do certain things or do things a bit differently.

I think the key is making the best out life and making sure that you are chronically fabulous and not just chronically ill!

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