Musings of a twenty-something living life with Lupus, EDS, PoTS, CRPS, Raynaud's and depression.

Monthly Archives: March 2013

My OT came baring gifts today. A mere two days after my initial visit, today I was provided with two wrist splints (to help EDS floppiness), a grabby stick thing to pick things off the floor, perch stools for the kitchen and bathroom, a shower seat, and a back rest to prop me up in bed. My flat does now resemble an old folks home but I’m pretty impressed with all my new gadgets.

They’re already making my life easier. I made myself some lunch on the hob for the first time in 9 months, maybe longer. I’m writing this propped up in bed with my wrist splints on, and the grabby stick thing is already proving useful for teasing the cat.

I can’t praise the South Birmingham PCT OTs enough. They’re incredibly speedy, friendly, cheerful – everything I wasn’t expecting to be honest. After three years of uphill struggle trying to convince doctors that the PoTS symptoms weren’t just side effects of other medications, begging to be referred to a specialist, badgering admin teams to actually get an appointment, finally getting a diagnosis but being told I faced another 14months before having the tests I need before I can start treatment… I had quite forgotten that there are people out there who actually want to help you. It’s given me a huge boost. I feel so much more supported, enabled and encouraged. It’s a great feeling. Now, back to annoying the cat…


I’m completely new to blogging. I’ve never read, followed or even really understood what a blog was until today. I followed a link posted on a PoTS facebook page that led to a blog made by a girl just like me. I’m not convinced that people will be interested in my (mostly mundane) thoughts and experiences. But if the aforementioned blog is anything to go by it seems there just may be an audience interested in the life of twenty-something struggling with multiple chronic illnesses. I can’t promise to be positive, uplifting and interesting, but I will be brutally honest about living life the poorly way.