I had intended to write sooner but this year hasn’t got off to the best start, with poor health and a surprising amount of stuff to do.
A string of viruses meant I was unwell leading up to Christmas and failed to make the carol service. But I did enjoy Christmas, although I slept through new year’s eve!
I had to make the difficult decision to start the process of applying for benefits, which is still an ongoing process. Admitting I am unable to work was something I found incredibly difficult.
A routine doctors appointment in March led to a referral to my local CFS Clinic, an appointment for which has just come through. The required blood test for the referral was a truly horrible experience, as I fainted mid-test and received no patience or understanding from the phlebotomist. The days and weeks that followed were actually some of the worst I’ve experienced in years. I was unable to sit up without feeling faint for days, and I couldn’t make it from the sofa to the bathroom without taking a pit stop lying on the kitchen floor to avoid fainting!
Thankfully things have improved since then however my legs are often still weak and tremble beneath me, particularly at night when I’m most fatigued. And silly things like sitting myself up in bed have become much more difficult. Oh and having a shower is now quite a palava, as once I’m in the shower cubicle I don’t have the strength to open the door again, as the magnetic seal is too strong!
I remain upbeat & positive for the most part, things will improve further again & life will become a little easier. I’ve just got to ride this tough time out.
Little things like managing a few hours out of the house with my family really help, yes I suffer post exertional malaise and an increase in pain and fatigue after, but the enjoyment of being out in the fresh air with family, or close friends, really is worth it!
I hope to start blogging more regularly but it has taken me almost a week to write this post (not helped by blogger deleting half my draft for no reason!) So more regularly may still be infrequently, I will see what I can manage.