I often think that this chronic illness life is harder for those on the outside; those who have to watch us suffering and care for us as best they can, all the while knowing that they cannot cure us or make the illness go away.
Those of you who follow my Instagram account will know that I am currently in Setback City. It’s definitely not a relapse – if it was I would be back to having to sleep in my parent’s old dining room and having to be wheeled to the toilet. But it’s also not ‘just’ a crash or post exertional malaise – it’s definitely worse than that and has already lasted a good few weeks. Still, it’s all ‘normal’ and par for the course with M.E.
I am being very well looked after, just as I have always been. Yet I am conscious of the effect this worsening of my health has on those who have to pick up the slack. I do very little to help around the house anyway but at times like this I am unable to even make myself some toast or a cup of coffee. I cannot currently drive or even leave the house easily. For every little thing I do there is payback. I’m not able to read my books at the minute or watch much television.
In the same way that my parents always did, Mr Tree Surgeon takes it all in his stride and insists he doesn’t need or want any ‘time off’ from looking after me, but I feel it is important to look after him and give him a break from it all like I used to try to do for my parents. Every once in a while I would go and stay the night with Not-so-big Sis for ‘Respite Care’. For my parents it meant a night off from cooking for and feeding me. A night off from feeling nervous and worried while I took a shower incase I became unwell while I was in there. That kind of thing.
Last week Not-so-big Sis came over to cook for me so Mr Tree Surgeon could go out for a meal with friends as planned. Why should he have to cancel plans just because I need babysitting? I’ll never forgot the feeling I had when my mum had to miss a wedding because I couldn’t be left on my own…
So I have come for a little holiday with Ma and Pa Jones at their new house. It’s a change of scenery, a different sofa to lie on, a different garden to sit in… And it’s all on one floor which is always good when your legs are so weak and almost too painful to use!