Neeva, me and M.E.

Neeva came into my garden the other day, and I sat down and had a chat with her.

Neeva with Bluebells

She was curious why I sometimes didn’t come out of my house for days even though it was sunny. I was quite surprised she had noticed and explained to her that I was ill with a condition called M.E. or Chronic Fatigue Syndrome.

“I feel tired all the time, and sometimes I’m so tired that I can’t get out and about. I’ve been ill now for nearly 3 years now. ”

“Does it hurt you?” Neeva asked, looking concerned.

Neeva concerned

“Well, luckily for me, it doesn’t hurt much, but some other people who have it can also have fibromyalgia too, which is quite painful. I just start to feel very tired when I do something physical, it makes my legs feel as if they have run a marathon, and I feel sick and dizzy, although I have done very little exercise, and then I have to lie down for about 2 hours for the feeling to go, and I can’t do very much for the rest of the day. It’s quite annoying and frustrating, because you can’t always do what you want to do.”

“I usually have a little sleep when I feel tired,” Neeva said.

“I would love it if sleeping helped, but I just feel as tired when I wake up as I did when I went to sleep. Sometimes, I don’t sleep very well at night too. It feels like more of a physical exhaustion, rather than feeling sleepy tired.”

“I think I would get quite bored if I couldn’t get out and do things because I was tired,” Neeva said.

Neeva sitting on a stone

“Well, luckily for me, I’ve always liked making things, so I’ve found stuff I can do while I’m sitting on the sofa with my feet up. I knit a lot, and crochet, and do needle-felting, I spin wool with a drop spindle, or sew, or I can draw and paint. Some things take more effort than others, and sometimes when I’m tired I find it hard to concentrate, so I just do whatever is easiest for me then.  I have managed to keep my job, although I work less hours now, and I enjoy getting away from home and thinking about different things, and being part of the “normal world.” I suppose I can feel a bit isolated with my illness at times, so work is a good antidote to this, although it is quite tiring for me.”

“Please will you teach me how to knit sometime?” Neeva asked.

“Of course I will , Neeva, we will have to find some small knitting needles though.”

“Oh good, I’ve always wanted to knit, that will be fun. Thank you.

Isn’t there a cure for the tiredness, some medicine you can take to make it better?” she asked.

“Not yet. The doctors don’t really know what it is or how or why it happens yet, so there is nothing to take to make it better. I was just told to “pace” myself, and not to overdo things because that will make it worse; but also not just to sit there and do nothing, to gradually try and do more exercise every day within my limits. It’s quite tricky to manage this in practice: if the lawn needs mowing, or I need to hoover the house or make the bed, I can’t plan any other exercise the same day, because I will usually be too tired, some days are better than others though.”

“Will you have it forever?” Neeva looked worried.

Neeva worried

“I don’t expect to, Neeva. Some people have it for a very long time, so it’s difficult to know how long I will have it for. Overall, I think it is getting a bit better, but sometimes when I think I’m feeling good, I get a bit over confident and do too much, and then I feel much worse for a while and have to rest to get better. I’ve been trying to build up my strength by going for little walks, and going a little further when I’m not too tired, which is why I bumped into you. I didn’t get out much recently because I tired myself out on my trip to Newcastle – (Art and Beer), but I’m feeling a bit better this week. I really hope it will go soon, and in the meantime, I will keep my spirits up by chatting to you and your friends and enjoying the things I CAN do.”

Neeva and me

I was really glad Neeva asked me about this, as it gave me a chance to share it with you during International M.E. Awareness week.

It’s quite hard to explain about the limitations of feeling tired all the time, because everyone gets tired, right?

This is one of the best explanations I have found – Spoon Theory

If you would like to support people with M.E., please donate to my local M.E. Support group – Borders M.E. Group

Or to support research into M.E., and people working for recognition and rights for people with M.E. – M.E. Association
Action for ME


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