My Graves' Disease And Coming Out The Other Side.. - Personal Stories - Living with Graves Disease


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My Graves' Disease And Coming Out The Other Side..

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#1 Firefly


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Posted 06 March 2014 - 10:39 AM


Living with Graves' disease is something I never imagined. I was hit with hypothyroidism in the summer of 2010. I remember the day so clearly. I was just an 'normal' 26 year old, working hard and getting on with my life. I would walk 30mins to work each day, their & back and was in my view healthy. I achieved my DofE gold and did the London to Paris bike ride (4 days) in 2007. My walking to work started to become more and more difficult. My work mates used to joke at me, as I was so red faces each time. Comments about my weight loss tho I eat well! I just always needed to catch my breath and try to breath constantly. It's all came to a point when on my way home 3 mins in I felt like my heart was about to irrupt though my chest as I slid down a garden wall. The 30min walk that day took me over 2 hours, as I just took one step at a time.


Everything changed again, I was constantly being sick and shaking violently. I could hold nothing still. I made arrangements to go to see a local doctor who at the time was more interested in picking the colour off her nails then looking at me. Telling me it was just a tummy bug and to go back to work & rest over the weekend. All set to go back to work the next day a family member popped over and saw the state I was in & took me to another doctor. Who thankfully took one look at me and said something was really wrong. He did a blood test their and then but by that time I literally slid off the chair.


The blood tests came back with hypothyroidism! I had no idea what it was or how it would affect my life. A year of medication, I'd go up and go down, weight on, weight off, no chance of stabilisation, I feel I have slept my late 20's away. Suddenly the Doctor at the time decided it was a 'one off' and to stop all medication. That week my body stated attacking one of my eyes. I didn't notice it until one of my parents noticed my left eye look wide, then one of my kids at school said the samething that week, 'what is wrong with your face miss?'


More doctors, more blood tests, pain, scratch from my eye, no sleep, weeping, pain, eye clinic at the hospital. I wanted to claw my eye out. Then the words - you have Graves' disease.


Sunglasses and an eye patch went on and so started the starring and name calling. The ironic thing is I didn't think much of how I looked before and would give any thing to look like her again. As I'm totally different now in my appearance. My consultant at the hospital was no help to me, coming out with things like ' you do know their are people worse off then you' sending me for regular MRI scans and totally forgetting she had sent me. No help in providing information about surgery, promising a colleague from Cambridge would look at me in a few months and when seeing her again she would say 'oh he would have no interest in seeing you'. I came away each time in tears. Hours spent sitting in a waiting room just waiting for help and having other Doctors just walk in and arrange lunch dates with the consultant when I'm in mid flow talking about my vision.


I was given the option of having my thyroid totally removed which I jumped at.


6 months on the other eye started pushing out, then double vision took hold. I could not go out, my double vision stopped me from living a normal life, everything I saw is twos. I stopped seeing friends as I couldn't have them seeing me like this or be around people as I felt like a freak. Graves' disease is a disease where people feel like they can catch something from you, people won't touch you or they stare. You learn what the public can be like and how cruel people can be when you are different.


Mirrors became a no no to me, I would do any thing to avoid them. My mum wanted me to get my hair cut in town, I made it in on a Sunny day, when in to the huge mirror hall and sat while my mum sorted the trim out - all these beautiful, pretty, thin girls and me, I have never experienced a panic attack before, but very one was looking at me with sun glasses on, that was it I ran out past my mum and in to the street trying to control my tears. I used to love wearing make-up and having my hair done, I don't see that person any more in my face.


My life change again this time for the better, my new and wonderful doctor who was so upset at the way my local hospital had treated me referred me to Moorfields, in a year I had had 4 operations. First to lower my left eye lid to stop the 'Dragon eyes' and then the double decompression surgery and then the right eye lid as it when up giving me wide eye. That op failed and I have another booked for May. My medication in 200mg which has been stable now since sept 2013 after year of never being stable.


That's the short version of my story which I hate telling, 4 operations later here I am, I feel like one of those stitched up key ring dolls? You know the ones I mean? I have come through it and overcoming my demons. I can thank a friend who is the same age as me and gone though it - showing me that 'we' can all get though this disease which takes hold of your life and fight it. You have to fight it! Not give in, not give up. I know it's time to take back my life. I have lost so many friends with the disease, some friends just could not cope or know what to say. Even my best friend got married and I was sent no invite. It's heart breaking. But you get up and move on, you have too. I have hated myself for so long and at times wished there was a way out. These dark days are behind me now and I have hope.


My facebook page dances on the Graves' disease shows photos of before, after and the operations in which I found my self going through to where I am now. They are graphic and if your thinking of decompression surgery then this is what you well go through. I have another op in May to re-do my wide eye as the first a temp did not work so fingers crost.


If I can go though this so can you!

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