Please read this fabulous post by Rebecca Bradley about the difficulties of living with ‘invisible illnesses’. She like me suffers from POTS, as well as each having another lifestyle limiting condition. So much of what she writes resonates with me. The hardest thing is that no one can see it. I hate being told “you look well”, which I probably do in comparison to my high dose steroid hamster face days admittedly, but I just want to scream back at them “but you have no idea how sh*t I feel on the inside”! It’s the funny stares when I use my blue badge, or when I get up out of the wheelchair in public. Yes I do have use of my legs, but that doesn’t mean that I don’t need the chair some days and for some things. I love the clip in the video of the girl crawling upstairs saying “I may be smiling and talking to you, but this is how it feels”. They see the couple of hours of me sitting and chatting but not the fact that I’ll be sofa bound, unable to do simple mental tasks, the following day due to the effort it has taken out of me.
I’m always worried that people think what they said to Rebecca, that I need to pull myself together and get on with it, that it’s all in my head. If only it was that simple!
Thank you Rebecca for finding the words to say things that I never seem able to x
Friday evening I went out for a meal with some friends. They’re friends I see only every few months. It’s a – let’s keep in contact kind of relationship. Usually after the meal, they want to go drinking and maybe do some dancing but I knew I couldn’t do this, my limit that evening was sitting down with them and enjoying an evening out that way. I’d arranged with my other half that he would collect me when I text him. I had to explain to my friends that my illness was causing me some real physical issues and it wasn’t possible for me to go standing around in pubs anymore.
I thought my friends would listen to what I had to say about what I was living with.
I thought my friends would understand I was still here, I was enjoying myself but there were some physical restrictions now…
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