Archive for November, 2009

Crashed!

Posted in Introducing New Event, Long-Term Illness, My Thoughts with tags , , , on November 4, 2009 by Sam Sadie

My severe symptoms are persisting. I rounded up some stray energy yesterday and managed to wash my hair (a real achievement for me these days), and decided since I was feeling all sparkly clean, I’d join my husband on a quick trip to the local supermarket. How daring! He hired a wheelchair there for me, and pushed me around…and about 10mins into the expedition, I was so exhausted, and my nerves so frayed, that I just begged him to take me home.  It was all just too much for me. It frustrates me that two simple (and supported – I used a bathboard to shower and the wheelchair at the shops) activities have so totally wasted me. I spent all day today just recovering…and even now I’m feeling shattered. I know that it’s all my fault though. In this crash, I should have known that washing my hair AND going to the shops was pushing the envelope a bit, but I was lured into the trap by my sense of being so clean and fresh. Washing my hair always gives me a sense of well-being and makes me feel so positive…I just have to be more disciplined, and not forget about pacing during that heady time.

I have been back in touch with our local ME/CFS Specialist Clinic, and I’m thrilled that they can see me on the 18th of this month! I just feel that I need to have everything reviewed. I still don’t have refreshing sleep, and I am experiencing new symptoms since this relapse began. I suppose I just want to feel that I’m trying something/anything to improve the situation. It’s my Type-A Personality, I suspect, rearing its head. I like to feel in control of things, and I feel like I’m floundering in a sea of chaos. Nothing feels like it should, and I feel as though my body has jumped ship. A case in point for my feeling of loss of control happened the other evening. My husband slaved over the stove making our dinner, and made mashed potato that had sweet potato mixed in. I hate sweet potato, and he knows it. I’m relatively un-fussy with regards to food, but there are about 3 veggies I don’t eat. He decided that I needed to increase the variety of vegetables I ate…”because it’s good for me”. Well, I just burst into tears. There is so little in my life that I can control, and here he was trying to remove the control I had over what I put in my mouth… I was hysterical. In his favour, he was so apologetic when I finally calmed down enough to explain the outburst to him, and he went downstairs and made me something new from scratch! I love him so much.

The past few days I have thought quite seriously about work. I am currently off sick (I have been since the end of July), and I know that I was totally unrealistic trying to work 30hrs a week with my ME/CFS. I was definitely not applying the principles of pacing at all. I came home exhausted every day, and on my bad days, I just couldn’t make it through the day. I was convinced that I had made a reasonable adjustment to my working week by dropping my Wednesday, and thereby only working two days together at a time. How I deluded myself! I wasn’t coping, I was hanging on by my fingertips…barely! I was pushing myself just to get through the day. I have been thinking about all this, and have realised that I definitely can’t go back to work the way things were. However, if this is the case…I’m not sure whether my employer will accept me on fewer hours. I’m fairly sure they won’t. Even if they do, they expect me in at specific times and for a specific duration, and this doesn’t allow for my crashes after a virus, or just out-of-the-blue bad days! I can’t afford not to work, as at present I am not a permanent resident in the UK (hopefully I’ll be granted permanent residency in January), and therefore am not eligible for any sickness or disability benefits. And as homeowners, we can’t really afford our mortgage and bills on just Chris’ salary.

So, I’m hoping that someone out there will have some good ideas for me! Ideally I’d like to work from home, possibly with the computer, and where I can pace myself as needed. I’ve considered starting a cake-decorating business, but don’t really know how to go about it. A lot of the work can be done sitting down, and I enjoy being creative. Also, I’ve chatted about this with my friend, Claire, who is busy doing a child-minding course. She has suggested we open a child-minding business together, with her doing the running around, and me doing the more sedentary and craft activities. It sounds good, but I worry that I won’t be able to just “crash” when my body has had enough. I also worry about all the viruses and bugs that kiddies can carry, and am concerned that I may end up constantly ill. Hmmm….there obviously is a lot to think about… Any suggestions or comments will be gratefully welcomed!!

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