I am as settled back into my routine as an M.E sufferer can be. I get out of bed, rest. Have something other than cake to eat, shower, rest, get changed, rest, check my emails, drink coffee, rest, chat to Mum, rest, have no caffeine after 2pm, do my stretches…go up to my room at 8pm to start getting my brain ready for bedtime…
So I’m back on the blog. Lucky you!
The other week I was able to spend the evening with friends and meet one of my friend’s three month old baby. (Cutest little boy ever by the way!) As we were chatting it got me thinking that my life has become very much like that of a baby.
Now I’m not a baby expert but I picked up on how he has to have a routine, his mummy has to teach him everything, he needs structure, he wakes in the night, he’d had a busy day and so was overstimulated and his usual routine had been upset…that’s like me and my brain!
My new-mummy friend spoke about how, after labour, she’d felt like a dead weight; like her limbs belonged to someone else. I obviously cant relate to being in labour and giving birth but I can relate to the dead weight bit. We have that feeling everyday.
She talked about the importance of breathing through labour, to keep calm and focus. Again it’s obviously not the same, but ‘proper’ breathing has been vital for me too. I can now keep (mostly) calm during a crash or through a period of intense pain. I am stronger than I realise perhaps.
It was great for someone to be able to relate on some level. I struggle to explain things face to face and doubt I do a good job of representing the M.E-massive (I tend to say ‘I don’t know’ am awful lot!) but I did my best and didn’t worry about how I may not have described things accurately when asked questions on the spot.
The evening with my friends was so unbelievably lovely. The girls walked me out (one in front and one behind as we went down the stairs.) They opened the doors for me because they’re too heavy for me to open myself. It’s all a bit like a military operation! My sister picked me up and my brother had dropped me off, reminding me to ring anytime I needed a lift even if it was only a few minutes after he’d dropped me off. I am so grateful, thankful and lucky that I have such a good support system that enables me to have little outings like this one; to cling on to some sense of normality.
I had felt that I wouldn’t make it. I’d had a careful day and not had a shower until my body felt ready (although it never really feels ready!) but the effort of changing left me zonked. Then the excitement and nerves and adrenaline of seeing my friends kicked in and I left the house feeling exhausted. I had purple time in car…kept myself calm and didn’t let myself over think things. (I discard the worry when I can-in this sense it is mind over matter for me, with regard to the anxiety.) I had eaten before I went. The others were having takeaway but I’m crashing after eating more frequently and didn’t want that to happen while I was out. (Chinese food is gross anyway!) But I did it! I made it and had a lovely , chilled evening.
For the next few days I had an itchy brain, my legs were twitchy, heavy and like jelly. I kept banging into the walls down the hall. I felt hungover and drunk and ‘out of it’, my body vibrated in time with my heartbeat, my brain was cloudy, I was dizzy…
but I was so, so happy, even if I was too exhausted to smile. When you have friends and family like mine, who have stuck with you through good health and bad, it’s hard to not look on the bright side. I have learnt who my real friends are over the last couple of years and I couldn’t be luckier with the ones that have stuck around.