Tuesday 18 October 2022

The two faces of M.E

So you may have noticed that I've been more absent on my blog since April when I had my surgery. I knew my surgery would crash my M.E but I didn't think it would be this back and last for so long. I'm still waiting to return to my pre-surgery self; the alternative is to accept that this is my 'new normal' and adapt.

Thankfully what I learnt from my hospital admission in Leeds a few years ago in a specialist unit for people with severe M.E I learnt new ways to live alongside severe M.E. This has helped me to adapt over the past few months such as I've added in an additional rest period early afternoon to help me keep going and I do more low-level activity periods (meaning I'm getting through a lot of audiobooks!) and I try though not always successfully to manage my activity levels. However this is hard as I have my PA's and for me getting a bath is a high energy activity* and it completely exhausts me but having a bath isn't something I can skip unlike other activities.

*Showers are not something that is possible for me as with my severe hypersensitivity having a shower is like being jet washed and causes so much pain and I get cold causing my muscles to spasm.

With my M.E I get my good and bad days just like most people with a chronic illness do but I do find that generally everyday flits between ups and downs. First thing in the morning I'm no so great then by the time my PA comes at 10am I've rested enough to get through our routine and then I'll dip a little before sliding back up and then I start to dwindle and then I'll just completely crash at bedtime.

On my good days I am able to enjoy things. I have a new PA who can't drive so on a Sunday with my social support hours I've started to enjoy being able to do things like go out in my wheelchair to post my letters or do some baking. I also love my PA Diane curling my hair for me. With my family I enjoy playing a game called Carcassonne. Other things I can do is colouring or other crafts like card making - I'm currently making Christmas cards to fundraise for Action for M.E there's also my letter writing. However even on my good days my activity allowance is limited and I have to be really careful not to overdo it and I have to balance my activity time with other things like appointments.

Then on the flip-side are my not so good M.E days. The days when my body is feeling pretty much every symptom of M.E and often my immune system flares up too (for me my M.E is more of a neuro-immune disorder). These days I'm more thankful for my profiling bed to help me sit up when I can't and for the care from my PA's and family; I'm grateful for my pain relief medication and heated blanket and for audiobooks to occupy me and to pass the time. On those days I just hope that tomorrow will be better.