Long Time, No Speak

Hello there,

Well…long time no speak. I know, I know I’ve been away for quite a while. It wasn’t a conscious choice, just a combination of quite a bit going on, and feeling particularly bad.

To be honest I’m still feeling pretty rubbish, even by my standards, but I’m going to try and push through and write this!

One thing that’s happened over the last couple of weeks is that I had the flu jab, and this is the main thing that has prevented me from posting on here. I mean I knew it would make me feel bad, but it really exceeded all my expectations. I had a fever for 4 days and couldn’t get out of bed, I had even more muscles and joint pain that usual, and the exhaustion was taken to a whole other level.

Although the fever and extra joint and muscle pain has subsided the super-exhaustion (as I’m now calling it) has remained. I sort of expected this too. Every time I overdo it by doing, well, anything, I get 3/4 days of post-exertional malaise, and then a few weeks of feeling more exhausted. However, just because I was expecting it, doesn’t mean I’m not still frustrated by it, because I am…very.

There’s nothing I can do though, just hibernate in my pyjamas under a blanket and watch Gilmore Girls.

On a positive note I had a really good appointment with the ME clinic I go to, which is such a rare thing that I spend the rest of the day with a shocked expression on my face. I’ve finally got referred to a physiotherapist for my hyper mobile joints, and it’s one that works in the ME clinic, so they won’t expect me to do 50 squats three times a day!

I’ve also been referred back to the cardiologist to try and improve my POTS, because I’m pretty sure that’s one of the reasons I’ve been doing so badly the last few months.

I don’t know about you, but it’s so rare that I come out of an appointment feeling better than when I went in! I usually come out wanting to cry and never leave my bed again. I know that’s not the way it’s supposed to be, but it is the reality for so many people who have chronic illness. Sad but true.

Anyway, I hope to get back into a bit more a regular posting schedule on here, I miss it when I’m gone!

Until next time, Rhosyn.



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