Saturday, August 6, 2011

Graves' Disease - My Story (Part One)

I want to preface this by firstly apologising that this is not about beauty but I think this post has been playing on my mind for the last while and I just need to get it out of me. I also want to say that I am not a health professional at all and I am most definitely writing this as my experience and opinion and nothing more. I am sharing this story so that people who are going through this don't feel so alone. 

I have been sick for years and only in the last few years did anyone figure out what was going on. 

When I say sick I don't mean anything visable or audable. I mean I have one of those diseases that other people can't see and so can't be expected to understand, unless of course they have gone through it. 

I have Graves Disease. An auto immune diesase, which basically means that my body was/is attacking itself. 

I know if you want all the facts about this disease there are better places to find facts than this blog but these are my experiences. 

It started when I was in college, many, many moons ago. I started to collapse, totally black out on the floor collapse. Now this isn't a documented symptom of Graves Disease but it was the first indication to me that things were awry. I will try to describe the feeling for you, I would feel short of breath, dizzy, nauseous, disoriented and generally out of my head. I would then usually get sick and collapse. How long I was out I have no idea because I would always be alone because of course I was getting sick.

Of course at this point it looked to everyone like I was having panic attacks and it felt like it too. I was hospitalised for tests where the doctors after weeks of poking and probing told me I was stressed and that I should try to keep my stress in check by doing things like Yoga. Not being a doctor myself, I had no choice but to take his advice and go on with my life. I felt crazy, like I was losing the plot because I was sure there had to be something more wrong with me. 

Hand in hand with the collapsing came severe mania and depression. I went from not wanting to be involved with living at all, to running  myself into the ground by being so active and well, a bit of a lunatic. I completely lost the run of myself and a lot of things/people in my life couldn't cope with me, almost as much as I couldn't cope with myself. For all intents and purposes I looked like I was bi polar and again I felt completely crazy, Like I was watching myself do things. I have described it before as having absolutely no control over yourself. Like you are being taken over/poessed but you can see yourself and you are screaming at yourself and you know you are not this person but you are powerless to stop yourself.

Then came the over heating. This was so scary. My face and chest would go bright red and scorching to the touch. I remember in college melting ice cubes on my chest to try and cool myself down and it having no effect. This wasn't all the time but it was often enough to be frightening. Again my doctors saw these symptoms and treated them as other thing. The over heating was apparently septicaemia and by the time I had finished the antibiotics the symptoms were gone again. 

Emotionally I couldn't deal with anything. I could go from really happy to bawling crying over nothing. I remember one day breaking a cup and sobbing while trying to pick up the pieces. I would get so angry over nothing. I would get a notion and then all of a sudden I would be picking fights with people. I was so unhappy and seriously afraid that I was actually crazy. 

The next thing was the heart pounding. I will never forget the nights I would be kept awake because my heart was racing. I felt as though it was going to jump from my chest. The thud thud thud thud thud over and over again so fast and manic. It was at this point I was given a heart monitor to use. I was only to turn it on when I felt I was about to collapse. So I spent two weeks living my life but with a whole load of wires stuck to my chest. Of course I couldn't turn the fecking thing on quick enough each time I collapsed. So they couldn't say it was anything to do with my heart. 

I had lumps in my throat (Goitres) I could feel the blood rushing through them all the time. Especially at night. Sometimes I felt like my throat was going to close completely over. It was so scary.

I got these horrendous rashes (pretibial myxedema)on my legs. Nothing would get rid of them. They got so bad I had to wear three pairs of tights to be comfortable wearing a skirt and even then they were still visible. They were itchy and sore and disgusting.

My eyesight was getting really bad too. My eyes were puffing out, I looked like a bug, a fly added to this was what I like to call fat neck. My neck was so swollen and puffy I looked like I had been inflated. I felt like I looked horrible.  I was shaky all the time. I couldn't carry a pot of water from the sink to the cooker without spilling it I was that shaky. I was also losing my hair at an alarming rate.

lost three and a half stone in two and a half months even though I was eating more than I ever had before and that is when my doctor found that I had Graves Disease.  I was sent to an endocrinologist who prescribed me something to keep the thyroid under control. I only saw this guy once every six months so I had no real thyroid care in those six months. Nothing was getting better in fact I was feeling worse.

After that things started to get worse. My personal life got un-liveable. My moods and craziness sabotaged pretty much every relationship I had, family, friends, work, girlfriends, you name it I was messing  it all up left right and centre all the while feeling totally out of control. 

My breaking point was when my whole life crumbled. I had no one, no job, no health and had ostracised most of my friends. (I didn't know how emotional this post would make me.) 

I am going to break this story in two here because I am aware how long and depressing this all is. 

I was going to disable comments on this post but I wont. Just please respect that it has been very hard to share this with you. 

If you have any questions on any of my experiences please let me know. I wont, however, give people medical advise or anything. 


cornflakegirl said...

Ah *hugs* hun, it sounds like you've been through mill (that might be an understatement actually) fair play to you for publishing this post. I look forward (ok so that might not be the right word but you know what I mean,) part two. I hope your life is a little back on track now.

I've had health troubles for years, so I completely get what you mean about your life crumbling. Thankfully they've diagnosed some of my issues (rheumatoid arthritis and coeliac disease,) but the third set of symptoms are still a it's still a waiting game.

*hugs* again and thank you for sharing.

Aphrosie said...

Thanks hon. I was so close to not posting it (for fear - you know?) I don't understand why but that post just needed to come out of me today for some reason. I started to go over things from a few years ago. Found an organiser and a whole load of books from when I was just learning about the disease and thought it would have been nice to know someone who knew what was going on or at least identified with it? you know? Like you don't feel so alone in it.

I really hope they figure out what the rest of your symptoms are because the not knowing is the hardest part! *hugs* and thanks for your nice comment. xx

cornflakegirl said...

Yeah, sometimes you just have to write about these things. I know exactly what you mean about it being nice to know that you're not alone.

Thanks for the *hugs*, I'm getting by but you're spot on about the not knowing being the hardest part. Fingers crossed they figure it out soon.

Aphrosie said...

Anything you know about, you can deal with but uncertainty is a balls! Fingers crossed for you honey! xxx