Welcome!

I've been ill for.. a long time! Diagnosed at 14 with PCOS and treated by laparoscopy but the little meanies keep coming back every few years and I've had another 3 operations since. At 20 I began working in London and all things seemed relatively sunny. Loved my job, wonderful family, great friends then *flmph* 4 years filled with crippling pain until eventually Google assisted with diagnosing bowel and abdominal Endometriosis. The diagnosis took this long because consultants, even professors automatically put the pain down to 'anxiety'. After one bodged operation in 2011 an -actual- specialist fixed me all up. Ready to go back to life again, excited about new job and *flmph* I lose my voice for a month, great.. Then in Jan 2012 (age 26) have a 'functional stroke' (happy new year!), thrombolysed, gain Raynaud's, dissociative seizures or functional attacks including facial spasm, dysphonia, limb weakness/paralysis, circulation problems and now in 2013 with the shiny addition of spasms and electric shocks all over the place! In short, I'm a bit broken. I've been 'officially' diagnosed with FND, PCOS, Endo, Raynaud's and Hypermobility Syndrome. With all those things combined it leads me to think there is something not quite right. I hope to learn, collect information and at very least I'd like to help anyone that finds themselves in the situation I am in. It's a scary place.

Thursday, 7 March 2013

Everyday, something new..

Let's cover the good things about today! My big achievement was getting the ironing done. Now that may not sound like much but it required standing for quiiiite a long time. I managed to keep myself from getting bored by watching Game of Thrones on the laptop. Nearly caught up so I'll be ready for season three. With that done I really wanted to try and stay on my feet for a bit longer so I did as much as I could to sort the room out for the weekend. Problem is with this is that I only ever seem to do part-jobs, then knowing that I will have to finish them off is kinda daunting but I know it will get done. Hopefully I'll be okay to do more tomorrow *fingers crossed*. I did my best and I'm proud of it. Another great thing that happened today is that my USB slippers came, hooray! They are yummy. Hopefully, if I do feel okay tomorrow I'll do a little video and rave on about them.

The not so good stuff. Well the odd groin nerve thing continued. It's really not pleasant. Later that night in bed I realised that one leg was warm'ish and the other was very cold. I couldn't feel things properly then realised that it was because my leg had gone 'dead'. I really don't know why, it made no sense to me. I tried to just ignore it and put my pain hypnotherapy on. Up at 6:15am feeling rather off colour but managed to get a little more sleep. The foot cramping was more constant today, I don't even know how to stop it but the slippers certainly help with the pain :). Glands were really painful as was my jaw, I still don't know whether to get the freak teeth checked, hrm. The newer thing is these huge walls of tiredness that just hit randomly.

Anyways I've been talking with a friend, venting a little and she's urging me to give talking, reading doing medical related things a bit of a break as it's bad for my brain so for once I will listen. I don't know how these people put up with me but I'm very very happy and lucky that they do.

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