Update

It feels like I've not writtten in ages. It's not exactly the hardest thing in the world to do but I'm finding that because all this stuff happens, writing about it makes me go through it all again in my head and I get more frustrated about the situation. As I look back at the letters and all the things that have happened including all of the endometreosis stuff and PCOS before that.. I think to myself, am I cursed? Am I just really unlucky or is there something underlying that isn't quite right. I suppose you get to a point of having most of your independance taken from you where you start to question everything. I saw a 19 year old girl post on the FB endo page the other day about how unhappy she was, how her social life was impossible and how much pain she was in. I felt so sad for her and a part of me thought thank god I'm not at that stage of my life again. I loved being in Australia.. so so much, but to go through the last few years again.. I couldn't do it. I guess it's good that she's found out at that age as maybe they can help more. There wasn't much I could say to console her though as really there is only pain control and sometimes even that doesn't make a blind bit of difference.

Anyway, so I can say with slightly more happiness I've not had a 'scary' attack for the last few days. Things are seemingly a bit calmer which gives me hope that whatever caused it in the first place is under control. I had a cardiac at RBH on Thursday. I thought it would be fine but during the scan my chest was hurting a lot and after what felt like a long time I got one of the jolts and breathing felt funny. My pulse felt so fast and strong that I could feel it in my teeth and my whole head felt like it was pulsing. That tends to happen every night when I lay down to go to sleep. I try to pad the pillows up so I am almost sitting and eventually I drift off. The jolts aren't pleasant though and the feeling down half the body afterwards is.. nasty! It's almost as if someone else is controlling my breathing. Circulation is so very strange at the moment too. It's like I don't have enough blood in my body. Had a few cases in the evening that one hand was white and freezing cold and the other was swollen and red. Then random fingers will go red or white and the same with my feet. Random patches of cold.. I've taken photographs but,, well I don't know if they are strange or not but I know it doesn't feel right. The left foot still isn't working but I think it's slightly improved from what it was. I can sort of.. twitch it.. if that makes sense? The lump in the throat keeps coming back in the evenings and my voice randomly dies entirely when it's at its most annoying stage. It's like havina a bubble somewhere in there that pumps up at different stages of the day. One minute I can talk, the next I can't. One ultrasound showed one thing, another showed nothing. This is what's confusing me. If they have done a CT of throat, chest and abdomen, why did they not pick up on this in the first place? Why did the heart ultrasound pick something up when the people say the CT is fine. Now DrC is asking for an MRI of the neck.. All these different scans and some pick up things that others don't.. How am I meant to even begin to trust these scans? It all feels like it did during those horrific 4 years where I had scan after scan and they told me there is definately nothing physical wrong with me as the scans showed nothing. Yet the endometreosis didn't show on the scan and this did not mean it wasn't there. It most definately was. Sitting there gluing things together, screwing up my abdomen. I wish I could believe that what they say is how it is.. but when no one is really actively trying to find out what the hell is happening to me and why. it seems that if I look normal during a consultation, everything is fine.

What also confuses me is why do doctors ask for family history and just ignore it. No one yet has seemed to note that me and my father are having medical problems at the moment and both of our scans have showed nodules in the thyroid. Also, the blood test I tested positive for is a form of autoimmune disease, which my father has recently been diagnosed with (a different variant though).

I want to be better, I want my life back. I just need a bit of help :(