T.e.d - Personal Stories - Living with Graves Disease

Advertisement

Jump to content


Photo

T.e.d


  • Please log in to reply
2 replies to this topic

#1 Hannah

Hannah

    New Member

  • Members
  • Pip
  • 1 posts

Posted 21 March 2011 - 05:35 PM

Advertisement

Hi all, Sorry my story is a bit long.
I feel a little bit ashamed, as well as liberated, to share my story, but I feel it's important as on most of the help groups and forums I have been on they are all about the physical effects and pain Graves has caused people, and not so much of the psychological effects, which in my case are harder to overcome.

 

My story starts at an early age.Although I was not officially diagnosed as having Thyroid disease till 2001, but Iím pretty sure I have had a problem with it from a child.

 

I'm sure of this as I was a very pale, ill looking child, who was forever sick and strangely underweight even though I overate, I missed a lot of school because I felt so ill, I was so miserable, cold and tired, even thought I would sleep for hours. My personality changed. I went from a happy go lucky child, with a sense of mischief and fun, to a shell of my former self. I was unrecognisable, I was no longer sure if I was staggeringly stupid or brilliantly clever as sometimes I absorbed information like a sponge, then other times I could not tell you what I had just read five minutes ago.

 

At school I became labelled as the poor girl with an eating disorder, and who never tried to apply myself, who just sat at the back of the class day dreaming and skipping off P.E because I had another throat infection. The school holidays did not bring me much joy either, I spent most of my summer in my room on my own with either a book under my nose or wafting along on a cloud, day-dreaming away my life. Not really part of the real world at all, my father would say to me "stop wearing out those beautiful blue eyes reading all day" come in to the real word; truth was the real world hurt.

 

So it went on, a lost childhood, awful adolescence and terrible twenties, all at the hands of a disease that resembled a sly snake that slithers through the undergrowth of life, then slinks out when you least expect it, to bury its fangs in your bum.

 

In my late teens I felt better, so at the tender age of seventeen I moved out of home, worked two jobs and studied to become a chef to better myself, I worked hard but partied harder. I did not look after myself at all as I drank a lot, smoked a lot, and my diet was appalling. I did little exercise; in fact unless you call drunk dancing on bar tops exercise then I did none.

 

(I often wander now if I had indeed brought this upon myself) As now I donít smoke, I still drink but only one or two, I eat a healthy diet and get lots of exercise and feel a lot better for it.

 

Sadly after many years working in the busy restaurant environment I started to notice I had become accident - prone and when I was chopping I could see one and a half of everything this lead to many cut fingers, so I came to the decision I had the qualifications so i may as well go into management, which i did, it was safer.

 

I continued to study lots of different things as I found it helped keep my brain busy and buzzing, sadly mostly at night, when I wished to sleep.

 

I found I could cope with all that the disease had to offer, the headaches, the tremors, the loss of concentration, cold hands, heart palpitations to name a few, but boy was I about to get floored...
The two halves of thyroid diseases are so very different, if the thyroid disease itself was black 'n' white, then T.E.D has all the colours in the spectrum, you see they can be very contrary, unpredictable and have incomprehensible qualities that set them apart, and boy was I about to find out.

 

I thought that I was happy with the slight facial flaw I was left with after numerous operations, that was till five years ago, It was my husbandís 50th birthday, so we went out, I was having fun till I overheard two ladies (I use this term loosely) talking about me. They were laughing about how I had let myself go and even went as far as to call me a stand in for Quasimodo. Now i was never breathtakingly beautiful, but I hoped I was not an old hag either.

 

As I was very feminine and took pride in my appearance, this remark cut me like a knife. I went from a fun loving lush to a agoraphobic Jekyll and Hyde character, being sweet as sugar one minute and then a raving beast the next, I think my husband truly believed I was suffering from schizophrenia with two personalities in one mind, with a variety of emotions within one personality.

 

I had extremes of character, on one level I would be alert, bright, chatty and chirpy and then on the other i would be so depressed I could not even find the words to describe how miserable I was. This would cause fantastic flare- ups within my marriage, as did my hypersensitivity. I would take umbrage to most things said, even though I prefer people to be frank and candid. I soon went to making love with the lights off to no sex drive at all. So we went from a close loving couple to a couple who could only just bear each other after 10 happy years as man and wife.

 

I spent a lot of time, effort and money on new clothes, make up, anything really to make myself feel better (to no avail) and when my surgeon Mr David Harding Verity of london (who was a saint by the way) informed me I had come to the end of the road, I could have died.

 

Now I am one who is inquisitive, and who wishes to find things out for herself. I do not wish to learn by other peopleís mistakes, I like to learn from my own. My husband says Iím as stubborn as a mule, I say strong minded, so anyway I spent hours researching T.E.D. and found out a lot, but still I was angry. I felt that Graves had robbed me of my looks. So anyway I went to a meeting held at Moorefieldís by the T.E.D Charitable Trust, I was shocked by the apparent lack of concern others had about their appearance. I soon admitted I was just vain.

 

When i got home that night I went on to the Moorefieldís eye hospital website and came across the cure. It was called The Moorefieldís West Africa hospital. Talk about sobering, there are people who face (avoidable in the UK) blindness each day and donít bitch and whine as much as me.

 

I knew I could create change as I am an incurable optimist really, so I chose to follow a positive path from now on, I wonít bury that rebellious side of myself, I will still Google every new DR/Consultant I cross paths with and keep myself up to date with all the information I can find, but with a new found sense of acceptance, patience, and courage that I have seen in others. I will try my best to fix my life and marriage back to its former self, but if I canít then I will be ready to evolve and try to be excited by what may be around the corner for me.

 

And I will try to remember that if life gives you lemons then you can make mine a G&T Ö and most importantly remember that there is always somebody worse off than me.




Advertisement

#2 linda

linda

    New Member

  • Members
  • Pip
  • 3 posts

Posted 14 January 2012 - 09:25 PM

Hi all, Sorry my story is a bit long.
I feel a little bit ashamed, as well as liberated, to share my story, but I feel it's important as on most of the help groups and forums I have been on they are all about the physical effects and pain Graves has caused people, and not so much of the psychological effects, which in my case are harder to overcome.

 

My story starts at an early age.Although I was not officially diagnosed as having Thyroid disease till 2001, but Iím pretty sure I have had a problem with it from a child.

 

I'm sure of this as I was a very pale, ill looking child, who was forever sick and strangely underweight even though I overate, I missed a lot of school because I felt so ill, I was so miserable, cold and tired, even thought I would sleep for hours. My personality changed. I went from a happy go lucky child, with a sense of mischief and fun, to a shell of my former self. I was unrecognisable, I was no longer sure if I was staggeringly stupid or brilliantly clever as sometimes I absorbed information like a sponge, then other times I could not tell you what I had just read five minutes ago.

 

At school I became labelled as the poor girl with an eating disorder, and who never tried to apply myself, who just sat at the back of the class day dreaming and skipping off P.E because I had another throat infection. The school holidays did not bring me much joy either, I spent most of my summer in my room on my own with either a book under my nose or wafting along on a cloud, day-dreaming away my life. Not really part of the real world at all, my father would say to me "stop wearing out those beautiful blue eyes reading all day" come in to the real word; truth was the real world hurt.

 

So it went on, a lost childhood, awful adolescence and terrible twenties, all at the hands of a disease that resembled a sly snake that slithers through the undergrowth of life, then slinks out when you least expect it, to bury its fangs in your bum.

 

In my late teens I felt better, so at the tender age of seventeen I moved out of home, worked two jobs and studied to become a chef to better myself, I worked hard but partied harder. I did not look after myself at all as I drank a lot, smoked a lot, and my diet was appalling. I did little exercise; in fact unless you call drunk dancing on bar tops exercise then I did none.

 

(I often wander now if I had indeed brought this upon myself) As now I donít smoke, I still drink but only one or two, I eat a healthy diet and get lots of exercise and feel a lot better for it.

 

Sadly after many years working in the busy restaurant environment I started to notice I had become accident - prone and when I was chopping I could see one and a half of everything this lead to many cut fingers, so I came to the decision I had the qualifications so i may as well go into management, which i did, it was safer.

 

I continued to study lots of different things as I found it helped keep my brain busy and buzzing, sadly mostly at night, when I wished to sleep.

 

I found I could cope with all that the disease had to offer, the headaches, the tremors, the loss of concentration, cold hands, heart palpitations to name a few, but boy was I about to get floored...
The two halves of thyroid diseases are so very different, if the thyroid disease itself was black 'n' white, then T.E.D has all the colours in the spectrum, you see they can be very contrary, unpredictable and have incomprehensible qualities that set them apart, and boy was I about to find out.

 

I thought that I was happy with the slight facial flaw I was left with after numerous operations, that was till five years ago, It was my husbandís 50th birthday, so we went out, I was having fun till I overheard two ladies (I use this term loosely) talking about me. They were laughing about how I had let myself go and even went as far as to call me a stand in for Quasimodo. Now i was never breathtakingly beautiful, but I hoped I was not an old hag either.

 

As I was very feminine and took pride in my appearance, this remark cut me like a knife. I went from a fun loving lush to a agoraphobic Jekyll and Hyde character, being sweet as sugar one minute and then a raving beast the next, I think my husband truly believed I was suffering from schizophrenia with two personalities in one mind, with a variety of emotions within one personality.

 

I had extremes of character, on one level I would be alert, bright, chatty and chirpy and then on the other i would be so depressed I could not even find the words to describe how miserable I was. This would cause fantastic flare- ups within my marriage, as did my hypersensitivity. I would take umbrage to most things said, even though I prefer people to be frank and candid. I soon went to making love with the lights off to no sex drive at all. So we went from a close loving couple to a couple who could only just bear each other after 10 happy years as man and wife.

 

I spent a lot of time, effort and money on new clothes, make up, anything really to make myself feel better (to no avail) and when my surgeon Mr David Harding Verity of london (who was a saint by the way) informed me I had come to the end of the road, I could have died.

 

Now I am one who is inquisitive, and who wishes to find things out for herself. I do not wish to learn by other peopleís mistakes, I like to learn from my own. My husband says Iím as stubborn as a mule, I say strong minded, so anyway I spent hours researching T.E.D. and found out a lot, but still I was angry. I felt that Graves had robbed me of my looks. So anyway I went to a meeting held at Moorefieldís by the T.E.D Charitable Trust, I was shocked by the apparent lack of concern others had about their appearance. I soon admitted I was just vain.

 

When i got home that night I went on to the Moorefieldís eye hospital website and came across the cure. It was called The Moorefieldís West Africa hospital. Talk about sobering, there are people who face (avoidable in the UK) blindness each day and donít bitch and whine as much as me.

 

I knew I could create change as I am an incurable optimist really, so I chose to follow a positive path from now on, I wonít bury that rebellious side of myself, I will still Google every new DR/Consultant I cross paths with and keep myself up to date with all the information I can find, but with a new found sense of acceptance, patience, and courage that I have seen in others. I will try my best to fix my life and marriage back to its former self, but if I canít then I will be ready to evolve and try to be excited by what may be around the corner for me.

 

And I will try to remember that if life gives you lemons then you can make mine a G&T Ö and most importantly remember that there is always somebody worse off than me.



#3 linda

linda

    New Member

  • Members
  • Pip
  • 3 posts

Posted 14 January 2012 - 09:26 PM

Just read your post this evening. I too suffer from the horrible eye problem. Puffy, staring, protruding dry eyes. I saw a doc in Scotland and he has offered me eye surgery. Have any of your eye doctors offered this to you?







LivingWithGravesDisease.com is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

The documents in this website are the sole property of LivingWithGravesDisease.com. They may not be redistributed or sold for profit in ANY WAY without consent of LivingWithGravesDisease.com. Permission is granted for the copying of these documents ONLY for one's own personal use or redistribution to others on a strictly informational and NON-profit basis, provided that: A.) these documents are not edited or modified in any way, B.) LivingWithGravesDisease.com is not held responsible or liable for its content and C.) this notice and the disclaimer below remain attached in their entirety.

© Copyright 2000-2014 All rights reserved.

About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service