Welcome to my health blog. I am a 29 year old living with a range of strange and confusing medical symptoms and conditions including various functional/neurological disorders, Endometriosis, PCOS, Raynaud's Disease and seronegative Hughes Syndrome. This blog is to document my struggle with doctors and the impact these illnesses have on my life. I hope that in some small way, my experiences will give others who are in similar situations some sort of strength or some form of comfort. Thanks for visiting!

Some may question my choice of title but if you are ill constantly and seem to always have your brain on pain and discomfort that's making your life very difficult, you begin to feel that perhaps you are a hypochondriac or what's worse, that other people see you as one. Whether you are or not, you still feel pain, sadness, and dispair which brings me to this quote from Harry Potter and the Deathly Hallows by J.K. Rowling:

"Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?" - Albus Dumbledore

Friday, 15 June 2012

To keep..

As reference: http://www.londonlupuscentre.co.uk/hughes-syndrome/symptoms/

Sounds an awful lot like the second one down.

Today has been long and, I don't know.. I don't feel sick so I should be happy. I just feel weak, uncomfortable and cold. I seem to have developed an on off switch in my head. There is a specific point on the right side of my head where I feel a slightly bulging vein and sometimes it becomes painful, very specific spot rather than a 'headache'.. I think it also connects to the discomfort i feel at the base of my skull and down the side of my neck. Anyway, today I noticed that if I had my head tilted to the side on a hard wood surface, my voice came back fine. Put my head up and it went again. Then later on when I got the discomfort in my head I pushed on the 'painful' bit. Low and behold, the pressure or stuff released from my neck/back of throat area and I could talk fine, let go and the voice goes. These switches do seem to have a knock on effect to the weakness and heaviness in my legs and other limbs. Certainly seems like it's all connected. My legs have been very painful throughout the day too.. more than usual. Also laying with them raised while laying down is a very bad idea.

I 'spoke' with the Proff at LLC today and probably made a right arse of myself - how do you even begin to describe all this? Basically tried to tell him the situation and that we are very worried it will escalate to something much worse again. So I'll be seeing one of his colleagues next week on Wednesday. I really, desperately hope they can help.

I got a letter in the post today about the KCL 'Activation' appointment, which is booked for the following Wednesday on my birthday. Apparently 2 hours of hyperventilation and flashing lights. Great.. Just how I want to spend my birthday. I will see what the LLC say and hopefully they will help so that I don't have to go through the telemetry stuff.
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