GRAVES’ DISEASE, my fight.
My name is Julie and I would like to share my experience with Graves’ disease.
I was 48 in 2003, when I came to realise that for most of my life I suffered from a thyroid disorder, which culminated with my being diagnosed with Graves’ disease. It is not uncommon for those with thyroid disorders, to be misdiagnosed or undiagnosed for many years.
Graves’ disease creeps gradually into your body, attacking your health with stealth, like a creeping death it preys upon you, it plays with your metabolism and turns your body on itself until your body begins to cannibalise itself.
At first, you do not notice, because of its insidious subtleties and subterfuge, but then before you know it, it becomes an outright war, a battle to retain your health, sanity and very life. A battle, in which you must fight and defeat your own body’s urge to self-destruct.
2003, the year of my daughter’s wedding, I was researching for my M.A./PhD, and problems with my health began to get really out of hand. The year started with joy and enthusiasm, yet there was an ominous feeling that something was wrong. By April I didn’t know why, but I seemed to be losing my memory and my mind, I could not order my thoughts, had an undying thirst and had been losing weight despite eating ravenously. People would speak and I heard the words before seeing their mouths move.
But, initially feeling pretty good, I wasn’t too worried, however the weight loss accelerated and I was losing muscle tissue and felt I was going insane. Despite the constant doctor’s appointments and blood tests for over twelve months, I carried on with living and studying. I exercised excessively, as I couldn’t sleep (runs 3-4 hours in the morning repeated in the evening and sleeping only 2-3 hours a day), I developed Tics, restless legs, a terrible itch, especially on my shins (I would wake up constantly to bloody, sweaty sheets) and my hooded eyelids were disappearing. The thing that was becoming more and more disturbing, however, was the ever-expanding brain fog. My mind was becoming more and more vague, my memory was failing, I would read constantly and it remained on the page, nothing went into my brain, on top of that my sight and hearing were deteriorating at a rapid pace, I developed tinnitus, could hear the blood rushing through my head whenever I lay down, and I spent most of my time in “the zone.” You know, that place that is sort of nowhere… I knew something was dreadfully wrong and truly believed I was going to die, but that didn’t concern me.
One week in July 2003 I was diagnosed with an over-active thyroid and possible Graves’ disease. Appointments were made to have more blood tests, scans and visit specialists. Unfortunately, almost immediately, I developed thyrotoxicosis, which I knew nothing about. Initially I developed severe upper respiratory and flu like symptoms, which I thought developed from being so run down; my GP thought the same and treated me with antibiotics, which did not help. A few days later, feeling worse, I returned to the GP, who prescribed stronger antibiotics; they also didn’t help, I visited my GP again the next morning, feeling markedly worse.
That night I was admitted to hospital with a severe thyroid storm (thyroidtoxicosis). Blood tests at the hospital came back confirming hyperthyroidism, caused by Graves’ disease. Fortunately, on the night I was admitted to the hospital, despite being semi-delirious, my mind, which by this time only wanted to sleep and not wake up, was able to somehow link the severe “flu” symptoms I was suffering from with my thyroid. That night, remains a blur, barely conscious I was rushed, thanks to my family, into the emergency trauma unit of our local hospital with a heart rate fluctuating between 150-195 BPM, with higher spikes, severely dehydrated, and I weighing a mere 50kgs. I say mere because I am 172 cms with solid bones and best weight is 70 kg, my boys joked that, I looked like the Gollum from LOTR; Humour helped keep my/our sanity. 🎈
By this stage, and even before I was experiencing the thyroid storm, I didn’t care if I lived or died. Fortunately one of my sisters came to my house that night, after worried calls from my now partner and my daughter, both having had weird calls with me.
For months before, each night I lay in bed thinking, “if I don’t wake up in the morning, it won’t matter, it would be a good thing.”
I think about that night now with relief, relief that I have people who love me, it was these people, my family and good friends that saved me. I am so thankful that my kids didn’t have to find me in my bed the next morning, because I know now, that by the next morning I would have either not been alive or in coma.
Mid 2004, I had radioactive iodine treatment and have since juggled medication for years. And yes, am now suffering from hypothyroidism or an under-active thyroid and will continue to juggle medication and its often bizarre, debilitating and zombifying symptoms for the rest of my life.
Hypothyroidism comes with a new set of problems, including chronic exhaustion, increased cholesterol and Blood pressure because the metabolism is so slowed. My sight continues to be monitored as both it and my hearing continue to be effected. But, the good thing is, I still have a life.
I still have to have blood tests every six months, (more if they come back funny). things have improved, sort of, and I am working , but cannot get back into my half finished Masters.
I must constantly monitor my health and not get stressed or I pay.
So, with all this happening, it seems somehow appropriate that I was, heavily into film studies and that I had chosen to focus on metamorphosis with its emphasis on time-space convergence/compression.
The cinema is a medium always in transition and a place where the screen as the place of representation is futile without a viewer, who is also always in a state of transition. Over the years I have been suffering this debilitating and chronic illness, which has both hindered my progress and given me some insight into what I am doing. During the worst time most of what I read bounced off the back of my brain, like a film projected into an empty cinema. The films were running over and over, with no one to watch, see or take in and understand the images that floated across the screen. As my eyes read and read, my mind remained passive thinking only of surviving each day.
Not only have my emotions and body been in a state of metamorphosis, my identity has been threatened, altered and almost lost. My body faded to a skeleton and I now fear losing weight. But worse still, I lost and almost forgot who I am.
Now all I can say, is I am very, very thankful to those, who watched me go through this and waited, quietly, being there to help me and hold me up as I barely managed to tread water and encouraged me through a terrible emotional roller-coaster of life and near death.
Over the last months of 2005, things became somewhat better and I began to wade through the quagmire of my Masters, a mess of jumbled and repetitive notes surrounded me. Not being the most organized of people at best of times; this period of illness has left me feeling hollow, isolated and numb, the isolation was added to by the seclusion of post graduate work. But, at the same time, I really could not face the world. So through all this, I feel I have experienced and understand what Deleuze is describing, when he talks about Bodies without Organs being that pathein (mental state) in which one decides to literally dis-organize oneself from a social context that has rigidly defined selfhood. [Rodowick, D.N., Gilles Deleuze’s Time Machine]. This was not a decision as such, rather something I was forced into.
I still get frustrated, I want to feel, normal, but can’t remember what that is. Some days I am good, some days bad… I could not work at all for over eighteen months, and am only barely feel capable now, as I still get extremely tired very quickly, my mind still fogs and some days, I don’t want to get out of bed. I am so tired but can’t sleep. Tinnitus follows me everywhere, and my identity is compromised.
I hope, this too shall pass. I am not, and never will be, as I was. I have good days and, not so good days, and rotten days, yet I am grateful, after all it’s not everyone who gets to have an auto-immune disease, and have their own body cannibalise itself, now, is it?
SO, WHAT IS GRAVES DISEASE?
Graves’ Disease is the most common form of hyperthyroidism, not to be confused with hypothyroidism, which is what I deal with now…
But what is hyperthyroidism?
The thyroid, the largest endocrine gland, it helps control metabolic rate, body temperature, and muscle tone. It is a butterfly-shaped gland, which is located in front of and on each side of the windpipe. When the body is exposed to too much thyroid hormone – which can happen in the presence of several different disorders – hyperthyroidism occurs.
Graves’ Disease is an autoimmune disorder. This immune system defect causes the production of antibodies that stimulate and attack the thyroid gland, so the gland grows and overproduces thyroid hormone. These antibodies also attack eye muscle tissue and in the skin on the front of the lower legs. The cause of Graves’ Disease is not known, though research is focusing on the immune system and genetic issues.
The choice of treatment is based on symptoms, individual preference and the physician’s guidance. Many treatments for Graves’ Disease halt the function of the thyroid gland, so the patient must take thyroid hormone pills permanently. Physicians may suggest medication, surgery or treatments specific to complications involving the eye. Graves’ Disease medications may include a beta-blocker, extra calcium and vitamin D, anti-thyroid drugs and radioactive iodine. 🎈
Graves’ Disease was named for Robert Graves, who first described the symptoms in 1835. The symptoms, which usually appear gradually, can include fatigue, weight loss, irritability, impaired sleep, irritation of the skin of the lower legs, rapid heartbeat, changes in libido, muscle weakness, heat intolerance, hand tremors, blurred or double vision and increased appetite and weight loss.
Be aware that other conditions, from menopause to hypoglycaemia, can mimic Graves.
If you or someone you know, have thyroid problems, please know you are not alone; the feelings of insanity, tiredness beyond belief, depression and frustration at the thought of self loss, muscle loss, muscle aches, eyesight loss, hearing loss, sanity loss, memory loss and the boiling blood, tinnitus, joint and muscle pain and everything else, are real, despite the lack of understanding from some of the community. You have hope, and sharing with others does help. And yes, while I now have an under-active thyroid and have experienced tiredness and exhaustion beyond belief, and will be on medication for the rest of my life, this is definitely much better than fading away to nothing.
Please feel free to contact me if you would like to share or just talk, know we are not alone, love to all Julie G 🎈