Last week was an emotional one. We were looking after my brother and sister-in-laws cats for a week, whilst they were on holiday. It gave us a chance to not completely follow a routine. I don’t think I’ve done this since I’ve been home from hospital with care. So that would be 9 years.
It’s just always been a procedure, I would flick in between rest and small activities to try and manage my symptoms. I haven’t done things that are out of the ordinary in the whole time I’ve been ill. There is always a strict plan at hand, which could only be changed if my M.E monster was causing me increased symptoms. I don’t remember doing anything spontaneous for a long time. However, this is all about to change. You can’t have a strict plan when you have a child, there has to be room to adjust, especially with a newborn.
I decided to start getting used to this now. I must say that the crippling exhaustion is something I generally find hard to push through… I simply can’t fight it. I have to go with my symptoms. In a way, it is working with the M.E. Monster for the best results.
Anyway, that week symbolised the first time I just played it by ear and how I was feeling. I wasn’t regimented to a plan. It felt very empowering. On one of the days, I decided that I wanted to wash my hair, but in their flat, there was only a bath with a shower in the bath. I decided as I wasn’t alone that maybe I could try having a normal bath? I mean I’ve not had a normal bath since 2006. I’ve had one Argo bath in hospital, where I was dipped into the water via sling for 30 seconds and that was the experience.
It was strange because I had to try and remember what it was like to stand up and get into a bath. I haven’t done it in 13 years! Samuel helped me get in and helped lower me into the bath. That feeling of having my body immersed in water was incredible. Suddenly, it was as if I was back to being 14 again, I remembered exactly what to do. I could remember doing it before.
Little bump clearly loved the hot water being on her and all my aches and pains felt a tiny bit easier, just for a moment. So I had a relaxing bath, listened to some music and it was really as normal as that! I was completely elated that I had managed to have one. It felt like such a big deal, which to a healthy person would seem pretty ‘normal’. The interesting part was getting out of the bath! Samuel held my weight, and again it was as if my body knew what to do. I suppose I had been having baths all my life before I was ill.
Having rested flat in bed, the payback was doable. I was expecting a lot more PEM but so far so good. Now, I’m going to just keep resting and taking things as I feel, with a little more spare of the moment in it. Wish me luck!