The story I am about to tell is very close to my heart. I can relate to Theda Myint’s struggle with Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome as it is known, because I used to have it. Oh, is that that illness where people pretend to be tired so they don’t have to work?
It’s that kind of misconception, misunderstanding and sometimes plain ignorance, that makes suffering with CFS/ME that much harder, especially when it comes to gaining the support you need. Which is why I want to tell you a little of my story first.
I was a high spirited and high achieving twenty-two year old when I set off on my overseas travel in 1999. But, I returned a shadow of my former self. It was as though a part of me was stolen from my luggage, and no one at the lost and found could find any trace of it.
I started to get tired for reasons I couldn’t explain. I’m not talking about ‘I haven’t had enough sleep tired’, I’m talking all encompassing exhaustion. The kind of tired that feels like you are trying to climb up hill with a bagof bricks on your back. So, the rounds began. Going round and round in circles, dragging myself from one Doctor to the next, one Naturopath to the next, one theory to the next.
I was tested for EVERYTHING – every virus, parasite, disease and vitamin deficiency known to mankind. At the end of the day, all they could say was that I had chronic fatigue. So I turned to alternative therapies. With every new Naturopath, came new hope. Maybe this one will be able to work out what is wrong with me? Maybe this one will know what to do to fix me?
I took so many vitamins that I rattled when I walked, but I never did really get any better, and of course, it cost me money I didn’t have. Lots of money. The kind of money that would be difficult for anyone to find, let alone someone without a job.
Oh, did you just say you didn’t have to work? Oh, I’d love to be able to not have to work. What the hell? Didn’t you just hear me telling you how horrible it was? Oh, that’s right, you still don’t really believe it’s a legitimate disease do you? Well, if you think it sounds so swell, how about swapping places with someone with CFS for a week? I guarantee you’d crumble after five minutes.
Waking up day after day, with nothing to do but stare at the four walls around you and count down the time until you go to bed again. Not being able to do everyday normal things. Not being able to use a computer for more than half an hour. Not be able to go out with friends without spending days in bed afterwards. Not being able to live the life you want to live. Spending night after night laying in bed wondering how you are going to get through the night. Desperation, despair, struggle, suffering and helplessness. Day after day. Night after night.
On top of this, there are people accusing you of making it up, and sometimes they can be the people closest to you. People lashing out at you, when you feel helpless to fight back. More than that, you can’t find the words to properly explain to anyone how you feel, because there seems to be no words in the dictionary to describe it. Tired, exhausted and burnt out don’t even begin to cover it.
It’s a debilitating, unyielding and relentless illness that taunts you with its endlessness, then ties your arms behind your back so that you are powerless to escape. Worse still, it hides in the shadows, never really revealing itself to anyone else except you. CFS holds you hostage, with the ransom being your life and everything in it.
Surely you must have got through it, because this article must have taken more than half an hour to type right? Yes, mine is a triumphant tale of determination, quiet endurance and strength of spirit. A strength that one uncovers when face to face with incomprehensible difficulties that pull the rug from under your feet.
It’s impossible to really sum up an eight year journey in a few paragraphs. It wouldn’t do it justice, but that’s okay, because this story is really about Theda. But before I told you about her, I wanted to dispel the misconception around this illness. Because Theda doesn’t need the disbelief – she needs your help.
So, what did the Doctor do for you that made you better? Why don’t you just tell Theda? That was my first instinct too (and I have), but not only is Theda’s case different to mine in its severity; she has already done the rounds. She no longer has time to try something different and for it not to work. Theda needs answers and she needs them now.
Theda was a Journalist with a promising career ahead of her and the world at her feet, before she was struck down with CFS after developing a flu in the UK. Her case has been reported by a Perth Doctor as the worst case he has ever seen out of the 10,000 CFS/ME patients he has treated during his career.
Theda has continually deteriorated during the ten years that she has suffered with this illness, eventually leading her to being bed ridden over the past five years, and hospitalised five times in the past 18 months. Theda has experienced constant pain in her head for four years, and there is no medication that is able to provide her relief.
Theda has extreme sensitivities to light, chemicals and even food. As a result of only being able to tolerate 12 types of food and malabsorption of nutrients, Theda’s weight once fell to a dangerous 37 kilos. It’s as though she is literally starving to death.
It’s not surprising that the extreme isolation caused by her now being too weak to leave her bed, along with the loss of her career, has led to episodes of anxiety and depression.
Theda’s loved ones report, “Theda is typically unable to talk, read or watch TV for more than 5 minutes as she can’t tolerate the exertion and stimulation. She can’t sit up for more than a few minutes and is unable to get herself food or medications. The only activity she can tolerate for longer periods are listening to book tapes (in limited amounts) and laying in rest. She also suffers severe pain and many other symptoms. Her level of debilitation is hard to understand unless you have witnessed it, even by fellow sufferers.
There are a number of things that are unique about Theda’s situation. Firstly, she is extreme in her case and has had CFS/ME for 10 years. Secondly, her health is often so incredibly low that we fear for her life. Theda has tried extensive conventional and alternative treatments and only got progressively worse over the entire period. Thirdly, due to her extreme level of debilitation/weakness, she is unable to do many of the available treatments. For example she can’t do treatments which involve regularly leaving the house to see a practitioner or require any level of physical or mental exertion.”
Leading world CFS/ME experts including Dr. Sarah Myhill, Dr Byron Hyde and Dr. Meirleir all recommend that treatment begin with extensive laboratory testing to effectively diagnose the cause of symptoms. These tests will cost Theda at least $7000, as many of them need to be sent overseas.
After liaising with international experts regarding her history, symptoms and test results, Theda’s GPs will devise a tailored treatment plan, which will be implemented locally.
Theda is about to commence a key immune modulating drug, which is currently used by medical experts in Europe and the U.S. This drug alone costs $1800 for a three month supply. Another drug that she may require after testing costs $2800 for one month.
Friends and family have set up the Help Theda Fund, to raise $100,000 for testing, treatment and ultimately for her to be able to receive specialised treatment in overseas clinics.
Unfortunately, CFS/ME is a condition that is not effectively diagnosed or treated in Australia. Doctors themselves admit they do not understand the complexities of it, and many in the general public still consider it a psychosomatic disorder, despite research indicating otherwise.
The Canadian Consensus Overview document for CFS/ME is a clinical case definition that is specifically designed to provide medical practitioners with a clear understanding of CFS/ME. It is also a useful document for those who know someone suffering with this illness and would like to understand more.
Once I had the answers I needed, it cost a lot of money on treatment, but nothing compared to what Theda needs. Bit by bit I improved, and as I improved, so did my life – bit by bit. Recovering from CFS gave me a new lease on life. A new joy, a new perspective, a new appreciation for the simple everyday things – the ability to live again. Theda deserves this too.
Considering the Western Australian Government has approved a $258,000 loan for a liver transplant for a known heroin addict, you would think that there would be more support for Thedas family’s financial plea to the government. This is why Theda’s mother Carol needs your support.
Donate
Help Theda Fund
Bank of Queensland
BSB: 126 566
ACT: 213 979 04
Contact Theda’s Family: helptheda@hotmail.com
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