This is me

It’s World ME/CFS Awareness Day.

It’s also the day of awareness for Fibromyalgia, MS, Lupus, MCAS and Long Covid, and all other Chronic Immunological and Neurological Diseases.

Some days, it feels like I’m going for the full set. Since the UK defunded and closed the NHS Long Covid service – as obviously it’s done all the care and research it needs to – I, along with many other people, have been referred to the ME/CFS service, along with Pulmonary Rehab, and anyone else who will have me.

Those services have also referred me to other support services. As of a week ago, I now have a shiny new wheelchair to go with my rollator. It’s all in black, which fits my aesthetic nicely. All I’m lacking is someone to push the damn thing! I honestly would not last long if I was self-propelling so that really wouldn’t help me.

I’ve also just had a visit from a lovely OT, who brought me a bath board and is getting me a bed handle, so I can have baths and get out of bed more easily. Less rolling around like a tortoise on its back is a definite improvement. She’s also looking at getting me a shower stool, as my shower chair only just fits in my walk in shower, no matter which way round I put it.

I saw Pulmonary Rehab last week, and did the saddest beep test ever. I should get an invite to a rehab group very soon, and…