I want my blog to be a positive space but today I feel like opening up and revealing some of the realities of living with a chronic illness. Sometimes it can be so frustrating.
I’ve been ill with Postural Orthostatic Tachycardia Syndrome for what seems like forever now, even though its actually been since January this year. It certainly hasn’t got any easier physically as I can probably do even less now than I could earlier this year, but mentally I have reached a point of acceptance and tend only to get upset when I’m having particularly tough days because the symptoms get too much. I no longer worry and stress about what my future may hold and I live in the now; taking every day/hour as it comes.
Having a chronic illness prevents me from doing many things; going out for dinner, going for a walk, socialising with friends, exercising… I could go on forever. Normally I am able to accept that and appreciate the little things I can do like baking with assistance, watching a film with my boyfriend etc But all I wanted to do yesterday was go to two shops with my Mum. I’ve been eyeing up all of the new autumnal pieces in H&M and New Look – the beautiful burgundy and khaki are in again. Ive bought a few things online recently but sent them all back as none of them look as they did on the websites and they didn’t fit. Shopping online simply isnt the same as shopping shopping?! Even though we parked almost right outside the shops I wanted to go to (as I have my blue badge now, woohoo), and used the wheelchair, by the time I had been down a few isles in New Look I was done for the day but I pushed on as I was desperate to shop. By the time we got to H&M it felt like the shop walls were closing in on me. I was so dizzy, my head was pounding and full of intense pressure and the sensory overload struck with full force. I felt so overwhelmed and couldn’t process anything around me. I don’t know whether it was because they have very narrow aisles in H&M, the lights were too bright, the music was too loud, or there were too many people or all of the aforementioned, but I had to get out of there asap. I could already feel the tears building. As soon as we got out of the shop the waterworks began behind my large bug-like sunnies. Why couldn’t I just be well enough to enjoy looking around two measly shops?! Girls my age go shopping all day with their Mums, I just wanted half an hour in my chair to treat myself to a few bits. I felt so defeated and frustrated. And what’s more, I will experience pay back for about a week because I had a look around a shop…crazy!
Rant over. Today I still feel defeated but I am feeling a little better about what happened. I am sure in a few days time I will look back and appreciate it took a lot of courage to try and go shopping. I will never stop trying to do the things I love because one day I might just be able to do them…
Do you ever get days where you feel very frustrated? Xx