Chronic Fatigue Syndrome My Story Updated
Written © Hillie (Rightasrain Studios) 2004-2006
WHAT HAPPENED TO ME?
Looking back over the years and the documentation of my experience with CFS, I feel I have come a ways - not a long way but I have made progress. Of course, one can become blind to progress because of the hurt and pain involved with facing the narrowing of life and its choices. It kind of leaves a scar. However, one of the biggest changes in my life is the onset of menopause which has drastically and obviously reduced my anaemia. There are other challenges to face of course but that is another story.
Family responsibilities have lightened but only lately. My children have grown up and are on their own path of life. This brings about another phase in my own life. There are now more emotional issues to deal with while in the past, many of my struggles with CFS involved physical downturns in energy. Now I have more time to recoup and regroup. However, when there is a big surge of events to deal with, that same sense of depletion and lack of stamina comes back. Not to the extent it had before but alarm bells do ring. For this reason I have found it hard to face getting a job - I never know when I will get sick and there are hidden dangers out there e.g. outgassing chemicals from furniture, carpets, paints, perfumes and noise from traffic and people. Plus extreme stimuli in maybe dealing with customers with loud music playing that is often found in retailing. Not to mention vertigo which, when it hits, makes it impossible to stand up or walk.
November 2001. Alarm bells ring. A whole series of events send me to an old pit. I get there and I recognise the furniture, wallpaper, the smell, everything. I know I'm off the planet again into the black hole.
THE PIT
An extremely busy Christmas period including children's and friends' parties and concerts, plus visitors, with varied infections, vertigo, a heatwave, reactions to food, a cat collar, paint and varnish, onset of menopause and all that involves, etc., led to my physical breakdown and in March 2002 I took to bed for three weeks. Mentally and physically I struggled, hauling myself out of bed to the bathroom and back again, listening to the happy neighbours' chatter as I lay there. My muscles were wasting. It became impossible for me to continue with my usual routine. As a result the longer I was inactive, the harder it became to get up and get moving.
As I persisted with getting up and first slowly walking around inside the house for only a few minutes at a time, then slowly walking once around the garden, I gradually got some energy back. It was at a price though. Numerous times I collapsed from exhaustion and once again I had to learn the secret of graded exercise and the debilitating effect of too much rest on the CFS sufferer. It was a vicious cycle but oh so gradually I came out of it. It took a year. And vertigo has been one of the most stubborn symptoms for me to deal with and has rendered me incapacitated on a number of occasions.
When I became ill my doctor had taken one look at me and decided to put me on antidepressants. I tried to convince him that the reason I was panicking was fatigue, not because of depression. However, I was started on Aropax (also called Paxil in other countries). A few days later I ended up in hospital at 2am. I was extremely agitated and could not relax or sleep. The hospital sent me home with sleeping tablets. I knew something was up and decided it was the antidepressants. Here is an exerpt from my diary:
"This morning I stopped the Aropax. I've had awful side effects that the doctor hasn't even picked up on. So there you go - my visit to the hospital wasn't in vain. I knew something was harming me. Other symptoms were: dry mouth, tremor, muscle spasm, no appetite (lost 4kgs in two weeks), shaking, drowsiness, fatigue, plus lots more symptoms found on the leaflet in the antidepressant box."
I've become convinced that the antidepressants exacerbated my illness considerably and that if I hadn't gone on them, I would not have been bedridden.
The Paxil forum on Yahoo is testimony to the debilitation, frustration and addiction experienced by numerous users. There are people who have gone off it and are still experiencing terrible reactive symptoms after two years of not taking it. Their posts on the forum show their anguish and quest for answers. I can only be grateful that I stopped using Aropax / Paxil after a week. My personal belief is that if I hadn't gone on this drug, it wouldn't have taken me a year to recover from the breakdown.
TREATMENT
My history of treatment is varied. Here are some of the things that did or didn't help according to the stubbornness of the illness at the time: numerous healthy diets; vitamins: high-quality muti-vitamins, B, E, calcium-magnesium (very helpful), minerals, evening primrose oil, acidophilus, iron supplements; balance between rest and graded exercise; friendship; help on how to deal with vertigo; going to bed and getting up at a reasonable hour; scattering jobs throughout the day thereby not using up all my energy at once; meditation. Mid 2004 started drinking a litre of water a day, walking 5 minutes a day and working up to more, no caffeine and biscuit before bed.
FRIENDS
Without my friends, I don't believe I would have had enough faith to get me through. They cared for me, talked with me, spent time with me and are, miraculously, still my friends. Thank you and I love you all for your tolerance of my idiocyncracies and your ability to have a good laugh. And to my sisters and to my mum - thank you for your support and friendship over the years.
Thanks for telling it like it is, even if I didn't want to hear it. Thanks for your honesty and giving me something to muse about in the quiet moments. Thank you for stopping me from being a complete hermit at the expense of our friendship. Thank you for giving me the time of day when I ring you in times of joy and anguish.
REFLECTIONS
In January 2002 I had a dream. By March I was very ill. In hindsight I know what the dream was telling me. Here it is as I wrote it down the next morning:
"I am on a train at the top of a magnificent mountain and it is starting to move downhill. Somehow I know it is going to go out of control and the driver makes the profound statement, "the fun of after-death is you get to go through it twice".
The train goes faster and faster. We are absolutely flying down the mountain. Some of the time I even manage to stop thinking about it and think about other things. A man is on the track and we go over him. I'm thinking, "Oh my God..." The train never left the track. A man in front of me asked the driver as we had moved off, "Can we get out now before we go too fast?" but the driver said, "No".
I see flames and stuff flying everywhere when we hit. But suddenly I'm at the top again where we'd started off and manage to get my luggage and get off the train. I walk up the sides of the tracks and make my way to the top and leave the train and people in it to do its thing."
Over the next year I have three more dreams involving fast moving transport - cars, trucks, buses. It's as if I'm on a treadmill and can't get off. Later, I documented my thoughts on the dream: "We can get off the merry-go-round of life even when people say we can't. Before life starts to hurtle out of control we can realise this and leave others to do that, turn around and go on our own course. Life is otherwise a "death-rush", out of control. I don't have to be. I will know when life is going to start hurtling out of control and I will have to "get off". Don't expect "the driver" to stop the train for me. Get off before it starts moving. There is a period of grace where I can get off before things get out of hand."
MY DREAM DECEMBER 1 2004...
"I'm on a train sitting on the floor. I have my head against the wall and put a piece of pink cloth between me and the wall against my head. I'm part of a test. The train is going very fast and I can hear it accelerating. It is testing to see if it can withstand a highspeed collision when it hits a stationery object.
I can hear the drivers talking around the corner. We hit and everything is white and still."
Another warning. Only this time I will heed it.
HIATUS HERNIA/VAGUS NERVE RESEARCH DECEMBER 2005
I was desperate. The doctor had told me about the vagus nerve and that that might be the cause of some of the weird episodes I had after eating - breathlessness, fast heart rate, spacey feelings. So I started researching online and happily found helpful info (since removed). But I had killed two birds with one stone - vagus nerve and hiatus hernia were linked. I was starting to understand my issues with panic attacks and realised the breathless feelings were often related to eating / hiatus hernia / vagus nerve running up behind the heart and stomach and being activated / excited.
The episodes some of my immediate family were having relating to eg eating too much and too quickly and the small stomach inherited from my father made me realise that this was a huge discovery and answer to some of my health issues.
January 2006 - visits to my chiropractor and kinesiology treatments stopped my breathless attacks on falling asleep dead in their tracks. I had been having these episodes for 21 years.
AFTERWORD
My fight with serious fatigue lasted 25 years and over-exertion still causes exhaustion (as of 2019). And more serious health issues were to surface, but that's for another lifetime.
© Hillie (Rightasrain Studios) 2006
Written © Hillie (Rightasrain Studios) 2004-2006
WHAT HAPPENED TO ME?
Looking back over the years and the documentation of my experience with CFS, I feel I have come a ways - not a long way but I have made progress. Of course, one can become blind to progress because of the hurt and pain involved with facing the narrowing of life and its choices. It kind of leaves a scar. However, one of the biggest changes in my life is the onset of menopause which has drastically and obviously reduced my anaemia. There are other challenges to face of course but that is another story.
Family responsibilities have lightened but only lately. My children have grown up and are on their own path of life. This brings about another phase in my own life. There are now more emotional issues to deal with while in the past, many of my struggles with CFS involved physical downturns in energy. Now I have more time to recoup and regroup. However, when there is a big surge of events to deal with, that same sense of depletion and lack of stamina comes back. Not to the extent it had before but alarm bells do ring. For this reason I have found it hard to face getting a job - I never know when I will get sick and there are hidden dangers out there e.g. outgassing chemicals from furniture, carpets, paints, perfumes and noise from traffic and people. Plus extreme stimuli in maybe dealing with customers with loud music playing that is often found in retailing. Not to mention vertigo which, when it hits, makes it impossible to stand up or walk.
November 2001. Alarm bells ring. A whole series of events send me to an old pit. I get there and I recognise the furniture, wallpaper, the smell, everything. I know I'm off the planet again into the black hole.
THE PIT
An extremely busy Christmas period including children's and friends' parties and concerts, plus visitors, with varied infections, vertigo, a heatwave, reactions to food, a cat collar, paint and varnish, onset of menopause and all that involves, etc., led to my physical breakdown and in March 2002 I took to bed for three weeks. Mentally and physically I struggled, hauling myself out of bed to the bathroom and back again, listening to the happy neighbours' chatter as I lay there. My muscles were wasting. It became impossible for me to continue with my usual routine. As a result the longer I was inactive, the harder it became to get up and get moving.
As I persisted with getting up and first slowly walking around inside the house for only a few minutes at a time, then slowly walking once around the garden, I gradually got some energy back. It was at a price though. Numerous times I collapsed from exhaustion and once again I had to learn the secret of graded exercise and the debilitating effect of too much rest on the CFS sufferer. It was a vicious cycle but oh so gradually I came out of it. It took a year. And vertigo has been one of the most stubborn symptoms for me to deal with and has rendered me incapacitated on a number of occasions.
When I became ill my doctor had taken one look at me and decided to put me on antidepressants. I tried to convince him that the reason I was panicking was fatigue, not because of depression. However, I was started on Aropax (also called Paxil in other countries). A few days later I ended up in hospital at 2am. I was extremely agitated and could not relax or sleep. The hospital sent me home with sleeping tablets. I knew something was up and decided it was the antidepressants. Here is an exerpt from my diary:
"This morning I stopped the Aropax. I've had awful side effects that the doctor hasn't even picked up on. So there you go - my visit to the hospital wasn't in vain. I knew something was harming me. Other symptoms were: dry mouth, tremor, muscle spasm, no appetite (lost 4kgs in two weeks), shaking, drowsiness, fatigue, plus lots more symptoms found on the leaflet in the antidepressant box."
I've become convinced that the antidepressants exacerbated my illness considerably and that if I hadn't gone on them, I would not have been bedridden.
The Paxil forum on Yahoo is testimony to the debilitation, frustration and addiction experienced by numerous users. There are people who have gone off it and are still experiencing terrible reactive symptoms after two years of not taking it. Their posts on the forum show their anguish and quest for answers. I can only be grateful that I stopped using Aropax / Paxil after a week. My personal belief is that if I hadn't gone on this drug, it wouldn't have taken me a year to recover from the breakdown.
TREATMENT
My history of treatment is varied. Here are some of the things that did or didn't help according to the stubbornness of the illness at the time: numerous healthy diets; vitamins: high-quality muti-vitamins, B, E, calcium-magnesium (very helpful), minerals, evening primrose oil, acidophilus, iron supplements; balance between rest and graded exercise; friendship; help on how to deal with vertigo; going to bed and getting up at a reasonable hour; scattering jobs throughout the day thereby not using up all my energy at once; meditation. Mid 2004 started drinking a litre of water a day, walking 5 minutes a day and working up to more, no caffeine and biscuit before bed.
FRIENDS
Without my friends, I don't believe I would have had enough faith to get me through. They cared for me, talked with me, spent time with me and are, miraculously, still my friends. Thank you and I love you all for your tolerance of my idiocyncracies and your ability to have a good laugh. And to my sisters and to my mum - thank you for your support and friendship over the years.
Thanks for telling it like it is, even if I didn't want to hear it. Thanks for your honesty and giving me something to muse about in the quiet moments. Thank you for stopping me from being a complete hermit at the expense of our friendship. Thank you for giving me the time of day when I ring you in times of joy and anguish.
REFLECTIONS
In January 2002 I had a dream. By March I was very ill. In hindsight I know what the dream was telling me. Here it is as I wrote it down the next morning:
"I am on a train at the top of a magnificent mountain and it is starting to move downhill. Somehow I know it is going to go out of control and the driver makes the profound statement, "the fun of after-death is you get to go through it twice".
The train goes faster and faster. We are absolutely flying down the mountain. Some of the time I even manage to stop thinking about it and think about other things. A man is on the track and we go over him. I'm thinking, "Oh my God..." The train never left the track. A man in front of me asked the driver as we had moved off, "Can we get out now before we go too fast?" but the driver said, "No".
I see flames and stuff flying everywhere when we hit. But suddenly I'm at the top again where we'd started off and manage to get my luggage and get off the train. I walk up the sides of the tracks and make my way to the top and leave the train and people in it to do its thing."
Over the next year I have three more dreams involving fast moving transport - cars, trucks, buses. It's as if I'm on a treadmill and can't get off. Later, I documented my thoughts on the dream: "We can get off the merry-go-round of life even when people say we can't. Before life starts to hurtle out of control we can realise this and leave others to do that, turn around and go on our own course. Life is otherwise a "death-rush", out of control. I don't have to be. I will know when life is going to start hurtling out of control and I will have to "get off". Don't expect "the driver" to stop the train for me. Get off before it starts moving. There is a period of grace where I can get off before things get out of hand."
MY DREAM DECEMBER 1 2004...
"I'm on a train sitting on the floor. I have my head against the wall and put a piece of pink cloth between me and the wall against my head. I'm part of a test. The train is going very fast and I can hear it accelerating. It is testing to see if it can withstand a highspeed collision when it hits a stationery object.
I can hear the drivers talking around the corner. We hit and everything is white and still."
Another warning. Only this time I will heed it.
HIATUS HERNIA/VAGUS NERVE RESEARCH DECEMBER 2005
I was desperate. The doctor had told me about the vagus nerve and that that might be the cause of some of the weird episodes I had after eating - breathlessness, fast heart rate, spacey feelings. So I started researching online and happily found helpful info (since removed). But I had killed two birds with one stone - vagus nerve and hiatus hernia were linked. I was starting to understand my issues with panic attacks and realised the breathless feelings were often related to eating / hiatus hernia / vagus nerve running up behind the heart and stomach and being activated / excited.
The episodes some of my immediate family were having relating to eg eating too much and too quickly and the small stomach inherited from my father made me realise that this was a huge discovery and answer to some of my health issues.
January 2006 - visits to my chiropractor and kinesiology treatments stopped my breathless attacks on falling asleep dead in their tracks. I had been having these episodes for 21 years.
AFTERWORD
My fight with serious fatigue lasted 25 years and over-exertion still causes exhaustion (as of 2019). And more serious health issues were to surface, but that's for another lifetime.
© Hillie (Rightasrain Studios) 2006
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