Lovely Feedback

Hi folks, I have not written anything this week as I am yet again, and have been since Monday afternoon, struggling at the bottom of a deep dark hole of symptoms. But, I got some lovely feedback about the blog yesterday that made me think that I should really try to write something to keep the momentum going. Thank you Jane, you made me feel like I’m doing a good thing here. XO.

So, you remember last week when I said I was waiting for payback from dealing with getting the washing machine fixed and all that entailed? Well it’s here and it’s a bitch! Also, I did not listen to Mr M.E (he’ll tell you I never do) when on Saturday I decided to do a little yoga to stretch out my tight limbs….

“Don’t overdo it”, he said. “15 mins of your own favourite and easy moves”, he said but no, I was feeling ok so I did a half hour routine. Big mistake. Along with everything from last week it has sent my body and my brain into a crash.

I have spent much of this week in bed or lying on the sofa, waking up exhausted everyday with pain all through my body, headaches, dizziness and no ability to concentrate on anything even when the words aren’t blurry and swimming about the page. I’ve had only 6 or 7 spoons to spend each day.

I’ve not been feeling down about it, I’m quite accepting of the fact that I’ve been a bloody idiot by trying to do too much and besides I’ve been too wrapped up in feeling like I’m dying to feel down about anything.

Yesterday is a good example of what these kinds of days/weeks are like. I had to make choices. I had not showered or bathed since the weekend and I really wanted to wash my hair and feel the clean water running over my skin. But I had to do my sums and make sacrifices, before I could have a simple shower.

If I shower and wash my hair today , I thought, I won’t have the energy to make dinner tonight. I’d better text Mr M.E, I thought, because I’m so lightheaded that I might fall or faint in the shower. If I don’t text him again within the hour he will know he needs to come home.

Have you ever had to plan like that just to be able to have a shower? Well people like me have to do that sort of thing all the time. It took me an hour and a half to shower, get dried and dressed and dry my hair and afterwards I was exhausted. I had to stop frequently, to sit on the side of the bath or to lower my aching arms mid lather because I couldn’t hold them up any longer. But eventually I was clean. Hygiene should not have to be a choice. A lot of choices I make shouldn’t have to be choices. I miss the days where I could do things without thinking about them, I miss the days when everything wasn’t a bargain of some sort.

We ended up eating a 3 bean chilli I had in the freezer for tea and now today my body feels even more wrecked with pain from that activity yesterday. I already know that I can’t make dinner again tonight.

I have been craving carbs (I even made Mr M.E buy crisps on the way home last night) because my body thinks it needs fuel and right now my fingers are pulsating with nerve pain as I write this, on my phone, lying down. My back aches, my neck hurts, my head is throbbing and all I have done today is get dressed. I am going to have to cave in and take some opiate painkillers – reserved only for my very worst days (but for people with it worse than me, that is every day).

I know this will pass and I’ll have better days, but boy I can hardly wait because I am suffering here! Ha!

If you know someone else with CFS/ME please share my little endeavour and please reach out to them. Sometimes the restrictions they face can leave them feeling very isolated and misunderstood, a little contact, a little understanding and a little positive feedback can make all the difference. I know it does for me.

Bye for now, love you guys.
Jo
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