It took me a long time to admit and realise that I was seriously ill. And of course, the longer I denied it, the sicker I got. It really is mortifyingly embarrassing actually.
It all started in 1996, when I had glandular fever (mono). My doctor had written me a note to have two weeks off work. After two weeks I still felt really awful, but reasoned that my doctor knew best, so I went back to work. Idiot move #1.
Climbing the stairs to get into work I was having and extremely hard time. In addition, my heart was jumping all over the place. I had never experienced that kind of thing before. I remember thinking 'Oh, maybe I shouldn't have come back to work yet'. But I just ignored it and kept going. Idiot move #2.
The following year was atrocious. I had what seemed to be a never-ending series of colds and flues (with hind-sight, probably all the same illness). I became so sick of being sick that one day I announced to those around me that I was just going to ignore it, and eventually it would have to go away. REALLY BIG IDIOT MOVE #3.
This was a stupid decision, but one that we are all taught to do. Society tells us to 'soldier on' when we are sick, not rest and recuperate. What is more, this decision was based on past experience. I had always recovered from illness before, so why would I expect not to now? Unfortunately my decision to 'soldier on' left me permanently disabled, in constant pain and I will probably never be able to work again..
This stubborn and deliberate denial went on for the next nine years. This was despite experiencing : very stiff/sore neck and excruciating eye pain, extreme exhaustion and weakness, constant pain in muscles and joints (quite severe a lot of the time), lack of co-ordination (leading to minor injuries), general malaise, nausea, loss of balance, vertigo, cognitive difficulties (memory, reasoning etc), photophobia, visual disturbances, insomnia, orthostatic intolerance, heart disturbances (tachycardia, ventricular ectopy, ventricular trigeminy and occasional atrial ectopy) and migraine, among other things. Yes, I really was that stupid......
In addition, quite early on I experienced right-sided facial numbness (about the same time as I was first experiencing the horrible stabbing eye pain-Yay!). This numbness in my face was relatively mild, but permanent. It came to my attention, years down the track, that it correlated with a mild paralysis.
I used to look at photos of me and think 'Why do I have such a stupid look on my face?'. I would resolve that next-time I would smile properly. But yet again, despite the fact that I was SURE I smiled when the picture was taken, there was that lopsided, wry smile. Then I finally realised that the muscles just weren't doing what I told them. I thought I was smiling, but I wasn't! I was dismayed, people must think I'm a right grump!
My dad once said, when looking at some photos 'I really like how you don't mug for the camera and give a big cheesy grin'. Yeah, but I was trying to! He calls it my Mona Lisa smile. I really like that. Makes me a bit different, I guess.
So if there only two things that I want you take away from all this they are :
1. If you are sick, take it seriously. Do the right thing and REST. Stay at home and don't spread your illness to everyone else!! If you don't improve GET HELP. If they don't listen to you GO SOMEWHERE ELSE.
and
2. Even when you have a partially paralyzed face, there is an upside!
Showing posts with label Myalgic enchephalomyelitis. Show all posts
Showing posts with label Myalgic enchephalomyelitis. Show all posts
Wednesday, May 26, 2010
Thursday, April 29, 2010
What's in a name?
Well maybe not an original question, but an important one nevertheless!
The answer? More than you might think......
Take this blog, for instance. Some might consider the name of it to be a bit odd, and that's because it is. Once it is explained however, it makes more sense.
I have always been an optimist, wanting to believe the best of people, and life in general. Despite it's best efforts, life has not managed to completely beat the optimism right out of me. And believe me, it has really tried!
It is impossible to remain unchanged in the face of life however, and indeed that is the case for me. The effect has been to dull my optimism somewhat. I no longer believe that life will be all rainbows and baby bunnies, but I do believe that it will be something. I live on the outskirts of optimism, in the fringe as it were. I try to remain positive, but it is a cautious optimism. Sneaking peeks around corners and peering into the distance and trying to see what is coming. Telling myself that everything will be alright (won't it?), that I'll get through (mostly).
So there you have it, I am The Fringe Optimist, and hence the name.
A much better name than some things, I might add.
Names can have a lot of power. They provide a quick reference to an object, person, idea etc. The ultimate summary and snapshot. Which is why a bad name can be so disastrous. There is a reason that most parents agonize over it for a ages when naming their children. They know that they could practically ruin their child's life with the choice of one wrong word.
Well there is one name that hasn't just ruined one person's life, but millions of peoples lives. What name is that? More on that later........
Firstly I would like you to think of a disease. It is horrible and utterly debilitating. Symptoms include : weakness, clumsiness and lack of coordination, vertigo, numbness, myoclonus, fainting, visual disturbances, extreme exhaustion, cardiac symptoms, digestive problems, cognitive difficulty, disorientation, nausea, painful lymph nodes, sleep disturbance, autonomic dysfunction including - low BP, high or low temperature, sweating, tachycardia, arrhythmia, orthostatic intolerance. Pain is almost always a feature. Joint pain, muscle pain, migraine, the list goes on and on. Patients often have co-infections.
Do you know what this disease is?
About 25% of patients have a severe form of the disease and are bed-bound. Many are unable to care for themselves. Some have to be tube-fed. Even those which have this disease only moderately will be left shaking and utterly exhausted after something as simple as a shower. Unable to do anything else for the rest of the day.
Sounds horrible doesn't it? Well it is, but even worse is that if you have this disease you will lose nearly all your friends, your job. Be alienated from nearly everyone, including your family. Will most likely receive no help from anyone. Will be ignored, or even worse, abused by most health care providers.
Do you know now?
Well I am certainly not the first person to have this rant, and I won't be the last. This disease is what they call Chronic Fatigue Syndrome. I say what they call it, because it's certainly not what I would call it. Makes it sound like you are just a bit sleepy doesn't it? Quit your bloody whinging and get out of bed! Well believe me, if it was just as simple as mind over matter, nobody would have this disease. I have talked to lots of sufferers and it always strikes me what a (mentally) strong, intelligent, determined lot they are.
I know that there are parts of the world (like the US) where they only know this disease as CFS, making it impossible to use any other name without people looking at you as though you have two heads (to tell the truth, it is not much better here in Oz).
However, this is the first and last time you will see me use that name. As far as I am concerned the neurological disease I described above is called Myalgic Encephalomyelitis or M.E., for short. You see that is the truly infuriating thing about giving this disease such a crap name, it already had a perfectly good name - M.E.
The answer? More than you might think......
Take this blog, for instance. Some might consider the name of it to be a bit odd, and that's because it is. Once it is explained however, it makes more sense.
I have always been an optimist, wanting to believe the best of people, and life in general. Despite it's best efforts, life has not managed to completely beat the optimism right out of me. And believe me, it has really tried!
It is impossible to remain unchanged in the face of life however, and indeed that is the case for me. The effect has been to dull my optimism somewhat. I no longer believe that life will be all rainbows and baby bunnies, but I do believe that it will be something. I live on the outskirts of optimism, in the fringe as it were. I try to remain positive, but it is a cautious optimism. Sneaking peeks around corners and peering into the distance and trying to see what is coming. Telling myself that everything will be alright (won't it?), that I'll get through (mostly).
So there you have it, I am The Fringe Optimist, and hence the name.
A much better name than some things, I might add.
Names can have a lot of power. They provide a quick reference to an object, person, idea etc. The ultimate summary and snapshot. Which is why a bad name can be so disastrous. There is a reason that most parents agonize over it for a ages when naming their children. They know that they could practically ruin their child's life with the choice of one wrong word.
Well there is one name that hasn't just ruined one person's life, but millions of peoples lives. What name is that? More on that later........
Firstly I would like you to think of a disease. It is horrible and utterly debilitating. Symptoms include : weakness, clumsiness and lack of coordination, vertigo, numbness, myoclonus, fainting, visual disturbances, extreme exhaustion, cardiac symptoms, digestive problems, cognitive difficulty, disorientation, nausea, painful lymph nodes, sleep disturbance, autonomic dysfunction including - low BP, high or low temperature, sweating, tachycardia, arrhythmia, orthostatic intolerance. Pain is almost always a feature. Joint pain, muscle pain, migraine, the list goes on and on. Patients often have co-infections.
Do you know what this disease is?
About 25% of patients have a severe form of the disease and are bed-bound. Many are unable to care for themselves. Some have to be tube-fed. Even those which have this disease only moderately will be left shaking and utterly exhausted after something as simple as a shower. Unable to do anything else for the rest of the day.
Sounds horrible doesn't it? Well it is, but even worse is that if you have this disease you will lose nearly all your friends, your job. Be alienated from nearly everyone, including your family. Will most likely receive no help from anyone. Will be ignored, or even worse, abused by most health care providers.
Do you know now?
Well I am certainly not the first person to have this rant, and I won't be the last. This disease is what they call Chronic Fatigue Syndrome. I say what they call it, because it's certainly not what I would call it. Makes it sound like you are just a bit sleepy doesn't it? Quit your bloody whinging and get out of bed! Well believe me, if it was just as simple as mind over matter, nobody would have this disease. I have talked to lots of sufferers and it always strikes me what a (mentally) strong, intelligent, determined lot they are.
I know that there are parts of the world (like the US) where they only know this disease as CFS, making it impossible to use any other name without people looking at you as though you have two heads (to tell the truth, it is not much better here in Oz).
However, this is the first and last time you will see me use that name. As far as I am concerned the neurological disease I described above is called Myalgic Encephalomyelitis or M.E., for short. You see that is the truly infuriating thing about giving this disease such a crap name, it already had a perfectly good name - M.E.
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