Chronic Fatigue Syndrome My Story
Written © Hillie (Rightasrain Studios) 16 October 1996 - originally featured on my old website Hillie's ImagEnation
(at the time of illness I was very involved in the church, and very religious)
WHAT'S HAPPENING TO ME?
March 31 1985, Perth, Western Australia. I was playing ball with my two eldest children who at the time were only 5 and 3. Upstairs sleeping was my youngest, a baby of 7 months. I started feeling a little dizzy. I had been to church that morning and in the afternoon had driven over to see a pram advertised privately. I put the dizziness down to busy-ness! It was now 4pm.
I went to tell my husband, who was rummaging around in the garage, how I was feeling. As I walked I felt worse and worse. Suddenly I could hardly stay upright. He helped me inside into the bedroom and I became hysterical because of the extreme vertigo, breathlessness, thumping heart. I was screaming "Jesus, don't let me die." I was terrified out of my wits.
My husband carried me to the car. When we arrived at the hospital, I threw up into the gutter. I felt decidedly humiliated and sick. I was checked but it was a hospital dealing with pregnancy, gynaecology, etc - the wrong place to be. So we went on to another. I was taken to Emergency - Xrays, an ECG (where they discovered a murmur), a checkup - nothing showed up. I was frightened. Three doctors checked on me.
We went home hours later. A neighbour was minding our children. I think it was close to 10pm when we got home. For weeks afterward, when I had dizzy turns I would become agitated and immediately want to hop in the car and go to the hospital. Hubby would calm me down and convince me it wasn't necessary. I was so fearful of a reoccurrence of "the attack" and fearful of insanity.
I was teary, depressed, felt I was trapped in my body. I would sit at the dinner table and have disassociation / receding feelings as if I wasn't a part of the group. At night I would hyperventilate with panic attacks; get up sweating, terrified. I would have bad dreams. I'd try to pray, curse the devil, etc. It didn't even touch the "illness". I was frightened to actually go to bed for fear of what sleep was coming to mean - insomnia, heaviness, fear of the darkness.
A friend came over and talked about how she had run away from her family (of 3 at the time). Afterwards I realised she had alluded to mental breakdown. Maybe that's what I was going through ?!?! The whole time I thought, Maybe tomorrow I'll feel a lot better. It wasn't to be. Not for some time, anyway.
DIAGNOSIS
A friend of ours suggested I go to a naturopath. I went, described my symptoms and left with the terrifying diagnosis - Myalgic Encephalomyelitis. I got in the car and cried and cried. I wasn't like other people I've read about - relieved at a diagnosis. The name sounded so scary in itself. I literally freaked out. Over the years to come I would consult numerous doctors, specialists, chiropractors, neurologists. I often wondered how fantastic it would be to have all these people in one place just to check out people with CFS so we wouldn't have to travel around seeing these practitioners with our little energy.
The chronic fatigue was unbearable. It was irresistible. It couldn't be ignored. Sometimes I would be in bed by 5pm after having slept or tried to, for part of the day already. This was often impossible because of my young children, although the eldest was already at school in Grade 1. Looking back, I should have gone on retreat for 6 months (!!) and rested. But this was, of course, a pipe dream - impossible. Now I know that if a CFS sufferer can rest immediately after becoming ill, there is more chance of complete recovery. Long stretches of rest after years of illness often have little effect.
My reaction to the diagnosis? As I said: panic. And this lack of relief caused me to fight the illness, to push through the fatigue, thinking "maybe this way I'll get better" but thus causing the symptoms to exacerbate.
In March 1986 we shifted house. We put our second child into preschool. The house was bright and cheery and airy compared to the previous house which was tudor style, huge - 2 storeys, 12 rooms and huge stairs, hallways, etc - dark, forbidding. I had loved it on sight but two months after moving in I got sick and I hated it after that. I saw a ghost in every corner!
We thought we were here to stay in our new house but the church we were involved with asked us to join them back in New South Wales, 4000 kms across Australia. In June 1986 we travelled back. I was 2 months pregnant with my fourth child.
ANOTHER SON
My illness made all such results loom larger than life. I cried. But when I arrived home with the news, my dear husband took me in his arms and told me how thrilled he was. That fourth pregnancy was one I'll never forget.
A friend of mine was upset with me when one day I opened up to her and said how worried I was about being pregnant and that I wished it wasn't so since I was so ill. She was upset that I could be so negative. All I needed was someone to talk to and offload on. Needless to say, I never shared with her again of my feelings on any subject. She had no idea what I was going through and was one of those super-positive people that sufferers in the early stages of M.E. can well do without!!
On arrival at our place of residence in NSW it was snowing. We lived with friends for a few weeks before moving into our new rental home. (Here, as summer came, I suffered terrible hay-fever, weakness, depression.)
Some of my symptoms seemed to lessen a bit with my pregnancy, although the fatigue was always there. Here I had a test done for viruses - no Coxsachie Virus but yes, the Epstein Barr Virus showed up (Glandular Fever). I think I contracted Glandular Fever back in 1978 when I became extremely ill but had felt I bounced back. So when the test was done in 1986, looking back on it now, I think the year with CFS was a re-instigation of EBV titres which showed up in the severe relapse I had in March 1985.
December 10, 1986. At 2.30pm my waters broke after a few contractions. I tried to ring hubby at work but he wasn't there. He got back home fairly soon, however, after receiving my urgent relayed message. We left for Lithgow for a 30 minute drive to the hospital. At 3.57pm my youngest was born. I just made it - I had been trying to resist pushing in the car. He was a beautiful, bonny, cuddly baby and squalled his lungs out at birth.
I was very depressed after the birth and had weird "turns". I talked to the midwife but she couldn't help in any way. A few days after arriving home I started to haemorrhage. So back in hospital for a curette. I lost two and a half litres of blood and heard the nurses rush around my bed hurrying to do the transfusion. I saw that famous "tunnel with the light at the end". I believe I could have died at that point. But my son was with me and, I believe, a key figure at this time in my life. I had to breast-feed him with splints on both arms. He was my motivation to get up in the morning and live through each day.
I had recurrent sensations of dying while in hospital. I would stare out the window at the far end of the ward and pray to God I wouldn't die. I had severe hypo attacks and looking back now I feel it would have been the hospital food, namely icecream as well as my suffering from anaemia. My blood pressure was very low, too. My family would visit but I always felt that they didn't understand what was going on with me, how serious it all was. Sometimes it helps if someone will just say, "I'm really worried about you" rather than putting on a brave face and not asking any questions. I had difficulty walking to the bathroom and getting dressed on the day I went home.
A MOVING STORY
For years afterward the spectre of getting AIDS from that transfusion stayed with me. Only now is it starting to lift. I could have had a test done but was too weak and fearful to cope with the test and the results. Nothing could have been done for me anyway. I decided to live with the fear. This may not be the right decision for many people but you try this experience for yourself if in doubt!! (In May 1997, I bit the bullet. My HIV test came back negative.)
For years after the transfusion and anaesthetic I felt devoid of energy and thought I was going crazy. Breastfeeding the baby gave me a terrible hormonal reaction and I would look out the window at the trees, feeling weird, depressed, listless and devoid of hope. During this time I did little on the church scene because those times I contributed made me feel worse. I laid pretty low with my musical talent.
September 1987 was the month my dad died. We had been up to visit in February and he had seen my two month old. I am so grateful for this. While at home for the funeral I again had my "turns" - dizziness, extreme agitation, fear, panic attacks. How I coped with the burial and memorial service I'll never know but I was the pianist for the service and also played a solo for my dad. I'm glad I did that.
I was able to have some help in the home from the church. No books had been written on CFS and literature was non-existent so it was to be understood that there would be few who understood this illness. In 1987 it was just beginning to be addressed. Around this time there was a decision made to move the church group up to Queensland. I was over the moon at the thought of being with my mum and dad by January 1988. But of course my dad died just prior to our move and he would never see my children grow up as my mum has.
We packed up our family once again. Each move we made after I got sick affected me, of course. It weakened me considerably (although I put on a brave face) and, I feel, aborted a lot of opportunities at getting well permanently. We moved nine times since I became ill (this includes a move to a caravan park and a motel while looking for housing).
We didn't have a home to go to so the children and I stayed with my mum while hubby stayed with friends looking for a house in our new city of residence. The heat and pollution exacerbated my symptoms and I felt extremely weak coping with that and the kids on my own and the uncertainty of our future housing situation.
We ended up staying with friends who very kindly took us all in for 9 weeks. During that time, two of my children were at school, the other two at home. All six of us stayed in one room. During this time I had a complete breakdown emotionally. I was frustrated with my illness and therefore with my husband and kids and with having to live with ten people, in spite of their generosity and patience. I fled with three of the children to my mum. I never did tell them I was escaping when I arrived.
We finally found a house to rent, stayed there for approximately a year, then bought a house on a third of an acre. This house was a godsend and we have lived here now for eight years - the longest we have lived anywhere since our marriage nineteen years ago.
REFLECTIONS
One of the hardest things to face with CFS is the attitude of people. For me, my relatives, immediate family and closest friends have been extremely supportive. All of them have been loving in regards to my illness. They may not fully understand and this is understandable since they're not in my shoes, obviously.
But I've found acquaintances and so-called friends more difficult to cope with. People are impatient with my "ok" when they ask, "How are you?". Then they reply, "Oh, just ok are you?" Then I feel obliged to give them an update on my CFS. This is very awkward when they're super-positive. People don't seem to realise that in the chronic stage of CFS it is a different scenario than the acute stage when the syndrome first hits and you are extremely unwell, as with post-viral fatigue and its symptoms. Or they ask, "How are you now ?" Don't they realise things are up and down from day to day, from hour to hour? The chronic stage does mean ups and downs; a possibility that you could be worse this time next year; your symptoms could be different next week; you could feel worse this afternoon although ok right now and vice versa.
This leads to the feeling that you are unreliable, uncommitted, non-committal. It makes you fearful, discouraged. This makes you sicker. It can make you panic, feel worthless, feel useless. It narrows your life right down. It is like living out the life stories of the hostages in Beirut during the '80s - your life changes in an instant - you are imprisoned - and as release comes (if it comes) you have a different life to "come home to" - things have changed - you have to start a whole new lifestyle that is nothing like the one you left years ago. No more fulltime work, no more top-to-toe maintenance of the home and kids, no more zestful ideas for outings and parties and entertainment and day-to-day fun and frolic!
The marriage comes under tremendous strain. You try to act the part at first. You go for walks but "pack it in". You say, "I'll drive" but have to stop because of vertigo. You decide "Yes, we'd love to come" then have to cancel. You are asked by hubby to make a decision (or reprimanded for not being able to) and mumble away in your beard. The tears flow endlessly for many long years. The energy for joy and merriment and laughter has been sucked away long ago down the plughole.
Your loving man becomes impatient and says many things you're sure he wishes he hadn't. He has a life, too, he says. He groans and moans and yearns for better times but you can't help him because you can hardly help yourself. The statistics are high for breakups of marriages of those with CFS. A friend divorced after suffering with CFS for seven years, married to a man who gave up on her and his son and walked out of their lives for good because of her illness. And he was a pastor!
People can't work out why you always get sick before doing something important. "No", I once told a sister, "It's not demons. It's not necessarily spiritual. We're human." It is stressful getting out there again and being active. It takes endurance, perseverance, energy.
I am a pianist. I no longer enjoy playing because I played many times while I was ill and used up my reserves of energy. It's difficult to convince people that it's not all "in your head", that you are not a malingerer and that even the best desires to get up and go do not make your body work. Something is wrong in the energy stakes and it is not a pretense. We are not lazy.
To those who wish to know, really know - I say, don't jump to conclusions. Listen, really listen. Don't offer advice unless it's asked for. If an M.E. person says, "I'm ok" and not "I feel great", let them be. They are simply being honest not negative. And be especially aware of the extremely complex dynamics that are at work in their lives, influencing their spouses, families, relatives, friends. This is no simple matter of saying, "Pull up your socks, you sluggard." It is not easy fixed.
There needs to be understanding, encouragement, compassion, empathy, an ability to let these people be, to let them be who they are in their illness, to be given permission by those around them to be - whether it's ill or happy or sad or depressed or whatever. This may seem extremely negative to those of us who are of a religious bent. But allowing these people who have CFS to have it opens the door to the future, opens the door to wellness. Why? Because the pressure is off - the pressure to perform when extremely fatigued and nauseous and ill; the pressure to talk coherently when extremely confused and fogged in the brain; the pressure to walk when legs are aching and wobbly; the pressure to hang up washing when fingers won't hold the pegs; the pressure to sew on buttons when doing fine work flew out the window years ago.
When you have given for years
And you can give no more
And you give up
Because this "thing" has happened to you
(often because of giving)....
Hope for a true friend
Hope for a future
(The door will open and let the future in)
The future will (not may) be different than the past
It will seem bleak at first
It will not be so full of doing as being...
But to be is more important.
It will eventually satisfy.
DOCTORS SAID...
...rest and you'll feel better
...just pray about it
...I wish I could have seen you having that turn. That would have been so funny
...there's no more I can do for you
...here's a prescription for an anti-depressant
...it can't be that exhausting to sit at the piano and just wiggle your fingers
TESTS I'VE HAD
ECG
EKG (CAT scan)
EchoDoppler
Epilepsy test
EBV confirmed (mononucleosis or Glandular Fever)
Allergy to grasses, foods
Meniere's Disease - balance testing for middle
ear disease
Barium meal test for Hiatus Hernia
Vitamin B injections
Hormone levels
Liver function
Homeopathic treatment
Iridology
Cholosterol
AIDS
Iron levels
Hypoglycaemia (low blood sugar)
Hyperglycaemia (Diabetes)
Thyroid
Ultrasound tests for liver, gall bladder stones,
stomach problems
Virus tests - Coxsachie, Hepatitis, Ross River Virus, Epstein-Barr Virus (Mononucleosis or Glandular Fever)
SYMPTOMS
Chronic fatigue, difficulty in speaking, memory and concentration fog, hyperventilation, panic attacks, depression, breathing problems, blurred vision, extreme nausea, disassociation, tinnitus, low blood pressure, weak arms and legs, food allergies and intolerances, heart palpitations, insomnia. Chesty, phlegmy cough when weather changes, inner trembling and nervousness, weakness, headaches, difficulty in cognitive function, cystitis, aches and pains, colds, viruses, low blood pressure, restless leg syndrome, IBS (Irritable Bowel Syndrome), lactic acid formation in muscles when active, reactions to some medication whether natural (i.e. vitamins) or chemical (i.e. antidepressants, antibiotics), pins and needles in extremities, low-grade fever, exhaustion from day-to-day stimuli including car trips, caring for family, showering, dressing; post-exertion exhaustion.
© Hillie (Rightasrain Studios) 1996
___________________________________________________________________
More Reflections from "Living with Chronic Illness" by Cheri Register
You can tough it out, ignoring symptoms at the risk of getting worse, or you can check out every little quirk, at the risk of hypochondria.
You can shop for miracle cures at the risk of harming yourself, or you can trust one doctor's judgment, at the risk of selecting unwisely.
You can keep your ailment secret, at the risk of deception, or you can talk openly about it, at the risk of self-pity.
You can ask friends for help, at the risk of becoming a burden, or you can hold fast to your independence, at the risk of isolation.
You can insist that your family treat you as normal and healthy, at the risk of denying them release for their own worries about you, or you can let them protect you, at the risk of becoming dependent and childlike.
You can strain your body to its limit, at the risk of harming yourself, or you can play it safe, at the risk of becoming an invalid.
You can live in terror of degeneration and death, at the risk of being immobilized, or you can look upon each good day as a special dispensation, at the risk of smugness.
You can insist on controlling the course of your life, at the risk of frustration, or you can "go with the flow" at the risk of passivity.
You can be angry about your fate, at the risk of bitterness, or you can focus only on your blessings, at the risk of self-delusion.
THE INITIAL PHASES OF CHRONIC ILLNESS (source unknown)
Diffuse symptoms that come and go over a period of time
Attempts to find psychological or circumstantial causes for these symptoms
False or partial diagnoses
Determination to make the symptoms disappear by changing habits or behaviour
Strained relationships with family and friends
Stress that is often not perceived as stress
Changes in mood and personality
Physical examinations and procedures that may be redundant, unnecessary or even harmful
Different and sometimes incompatible diagnoses and remedies from different specialists consulted
Relief at having an answer that seems definitive.
Written © Hillie (Rightasrain Studios) 16 October 1996 - originally featured on my old website Hillie's ImagEnation
(at the time of illness I was very involved in the church, and very religious)
WHAT'S HAPPENING TO ME?
March 31 1985, Perth, Western Australia. I was playing ball with my two eldest children who at the time were only 5 and 3. Upstairs sleeping was my youngest, a baby of 7 months. I started feeling a little dizzy. I had been to church that morning and in the afternoon had driven over to see a pram advertised privately. I put the dizziness down to busy-ness! It was now 4pm.
I went to tell my husband, who was rummaging around in the garage, how I was feeling. As I walked I felt worse and worse. Suddenly I could hardly stay upright. He helped me inside into the bedroom and I became hysterical because of the extreme vertigo, breathlessness, thumping heart. I was screaming "Jesus, don't let me die." I was terrified out of my wits.
My husband carried me to the car. When we arrived at the hospital, I threw up into the gutter. I felt decidedly humiliated and sick. I was checked but it was a hospital dealing with pregnancy, gynaecology, etc - the wrong place to be. So we went on to another. I was taken to Emergency - Xrays, an ECG (where they discovered a murmur), a checkup - nothing showed up. I was frightened. Three doctors checked on me.
We went home hours later. A neighbour was minding our children. I think it was close to 10pm when we got home. For weeks afterward, when I had dizzy turns I would become agitated and immediately want to hop in the car and go to the hospital. Hubby would calm me down and convince me it wasn't necessary. I was so fearful of a reoccurrence of "the attack" and fearful of insanity.
I was teary, depressed, felt I was trapped in my body. I would sit at the dinner table and have disassociation / receding feelings as if I wasn't a part of the group. At night I would hyperventilate with panic attacks; get up sweating, terrified. I would have bad dreams. I'd try to pray, curse the devil, etc. It didn't even touch the "illness". I was frightened to actually go to bed for fear of what sleep was coming to mean - insomnia, heaviness, fear of the darkness.
A friend came over and talked about how she had run away from her family (of 3 at the time). Afterwards I realised she had alluded to mental breakdown. Maybe that's what I was going through ?!?! The whole time I thought, Maybe tomorrow I'll feel a lot better. It wasn't to be. Not for some time, anyway.
DIAGNOSIS
A friend of ours suggested I go to a naturopath. I went, described my symptoms and left with the terrifying diagnosis - Myalgic Encephalomyelitis. I got in the car and cried and cried. I wasn't like other people I've read about - relieved at a diagnosis. The name sounded so scary in itself. I literally freaked out. Over the years to come I would consult numerous doctors, specialists, chiropractors, neurologists. I often wondered how fantastic it would be to have all these people in one place just to check out people with CFS so we wouldn't have to travel around seeing these practitioners with our little energy.
The chronic fatigue was unbearable. It was irresistible. It couldn't be ignored. Sometimes I would be in bed by 5pm after having slept or tried to, for part of the day already. This was often impossible because of my young children, although the eldest was already at school in Grade 1. Looking back, I should have gone on retreat for 6 months (!!) and rested. But this was, of course, a pipe dream - impossible. Now I know that if a CFS sufferer can rest immediately after becoming ill, there is more chance of complete recovery. Long stretches of rest after years of illness often have little effect.
My reaction to the diagnosis? As I said: panic. And this lack of relief caused me to fight the illness, to push through the fatigue, thinking "maybe this way I'll get better" but thus causing the symptoms to exacerbate.
In March 1986 we shifted house. We put our second child into preschool. The house was bright and cheery and airy compared to the previous house which was tudor style, huge - 2 storeys, 12 rooms and huge stairs, hallways, etc - dark, forbidding. I had loved it on sight but two months after moving in I got sick and I hated it after that. I saw a ghost in every corner!
We thought we were here to stay in our new house but the church we were involved with asked us to join them back in New South Wales, 4000 kms across Australia. In June 1986 we travelled back. I was 2 months pregnant with my fourth child.
ANOTHER SON
My illness made all such results loom larger than life. I cried. But when I arrived home with the news, my dear husband took me in his arms and told me how thrilled he was. That fourth pregnancy was one I'll never forget.
A friend of mine was upset with me when one day I opened up to her and said how worried I was about being pregnant and that I wished it wasn't so since I was so ill. She was upset that I could be so negative. All I needed was someone to talk to and offload on. Needless to say, I never shared with her again of my feelings on any subject. She had no idea what I was going through and was one of those super-positive people that sufferers in the early stages of M.E. can well do without!!
On arrival at our place of residence in NSW it was snowing. We lived with friends for a few weeks before moving into our new rental home. (Here, as summer came, I suffered terrible hay-fever, weakness, depression.)
Some of my symptoms seemed to lessen a bit with my pregnancy, although the fatigue was always there. Here I had a test done for viruses - no Coxsachie Virus but yes, the Epstein Barr Virus showed up (Glandular Fever). I think I contracted Glandular Fever back in 1978 when I became extremely ill but had felt I bounced back. So when the test was done in 1986, looking back on it now, I think the year with CFS was a re-instigation of EBV titres which showed up in the severe relapse I had in March 1985.
December 10, 1986. At 2.30pm my waters broke after a few contractions. I tried to ring hubby at work but he wasn't there. He got back home fairly soon, however, after receiving my urgent relayed message. We left for Lithgow for a 30 minute drive to the hospital. At 3.57pm my youngest was born. I just made it - I had been trying to resist pushing in the car. He was a beautiful, bonny, cuddly baby and squalled his lungs out at birth.
I was very depressed after the birth and had weird "turns". I talked to the midwife but she couldn't help in any way. A few days after arriving home I started to haemorrhage. So back in hospital for a curette. I lost two and a half litres of blood and heard the nurses rush around my bed hurrying to do the transfusion. I saw that famous "tunnel with the light at the end". I believe I could have died at that point. But my son was with me and, I believe, a key figure at this time in my life. I had to breast-feed him with splints on both arms. He was my motivation to get up in the morning and live through each day.
I had recurrent sensations of dying while in hospital. I would stare out the window at the far end of the ward and pray to God I wouldn't die. I had severe hypo attacks and looking back now I feel it would have been the hospital food, namely icecream as well as my suffering from anaemia. My blood pressure was very low, too. My family would visit but I always felt that they didn't understand what was going on with me, how serious it all was. Sometimes it helps if someone will just say, "I'm really worried about you" rather than putting on a brave face and not asking any questions. I had difficulty walking to the bathroom and getting dressed on the day I went home.
A MOVING STORY
For years afterward the spectre of getting AIDS from that transfusion stayed with me. Only now is it starting to lift. I could have had a test done but was too weak and fearful to cope with the test and the results. Nothing could have been done for me anyway. I decided to live with the fear. This may not be the right decision for many people but you try this experience for yourself if in doubt!! (In May 1997, I bit the bullet. My HIV test came back negative.)
For years after the transfusion and anaesthetic I felt devoid of energy and thought I was going crazy. Breastfeeding the baby gave me a terrible hormonal reaction and I would look out the window at the trees, feeling weird, depressed, listless and devoid of hope. During this time I did little on the church scene because those times I contributed made me feel worse. I laid pretty low with my musical talent.
September 1987 was the month my dad died. We had been up to visit in February and he had seen my two month old. I am so grateful for this. While at home for the funeral I again had my "turns" - dizziness, extreme agitation, fear, panic attacks. How I coped with the burial and memorial service I'll never know but I was the pianist for the service and also played a solo for my dad. I'm glad I did that.
I was able to have some help in the home from the church. No books had been written on CFS and literature was non-existent so it was to be understood that there would be few who understood this illness. In 1987 it was just beginning to be addressed. Around this time there was a decision made to move the church group up to Queensland. I was over the moon at the thought of being with my mum and dad by January 1988. But of course my dad died just prior to our move and he would never see my children grow up as my mum has.
We packed up our family once again. Each move we made after I got sick affected me, of course. It weakened me considerably (although I put on a brave face) and, I feel, aborted a lot of opportunities at getting well permanently. We moved nine times since I became ill (this includes a move to a caravan park and a motel while looking for housing).
We didn't have a home to go to so the children and I stayed with my mum while hubby stayed with friends looking for a house in our new city of residence. The heat and pollution exacerbated my symptoms and I felt extremely weak coping with that and the kids on my own and the uncertainty of our future housing situation.
We ended up staying with friends who very kindly took us all in for 9 weeks. During that time, two of my children were at school, the other two at home. All six of us stayed in one room. During this time I had a complete breakdown emotionally. I was frustrated with my illness and therefore with my husband and kids and with having to live with ten people, in spite of their generosity and patience. I fled with three of the children to my mum. I never did tell them I was escaping when I arrived.
We finally found a house to rent, stayed there for approximately a year, then bought a house on a third of an acre. This house was a godsend and we have lived here now for eight years - the longest we have lived anywhere since our marriage nineteen years ago.
REFLECTIONS
One of the hardest things to face with CFS is the attitude of people. For me, my relatives, immediate family and closest friends have been extremely supportive. All of them have been loving in regards to my illness. They may not fully understand and this is understandable since they're not in my shoes, obviously.
But I've found acquaintances and so-called friends more difficult to cope with. People are impatient with my "ok" when they ask, "How are you?". Then they reply, "Oh, just ok are you?" Then I feel obliged to give them an update on my CFS. This is very awkward when they're super-positive. People don't seem to realise that in the chronic stage of CFS it is a different scenario than the acute stage when the syndrome first hits and you are extremely unwell, as with post-viral fatigue and its symptoms. Or they ask, "How are you now ?" Don't they realise things are up and down from day to day, from hour to hour? The chronic stage does mean ups and downs; a possibility that you could be worse this time next year; your symptoms could be different next week; you could feel worse this afternoon although ok right now and vice versa.
This leads to the feeling that you are unreliable, uncommitted, non-committal. It makes you fearful, discouraged. This makes you sicker. It can make you panic, feel worthless, feel useless. It narrows your life right down. It is like living out the life stories of the hostages in Beirut during the '80s - your life changes in an instant - you are imprisoned - and as release comes (if it comes) you have a different life to "come home to" - things have changed - you have to start a whole new lifestyle that is nothing like the one you left years ago. No more fulltime work, no more top-to-toe maintenance of the home and kids, no more zestful ideas for outings and parties and entertainment and day-to-day fun and frolic!
The marriage comes under tremendous strain. You try to act the part at first. You go for walks but "pack it in". You say, "I'll drive" but have to stop because of vertigo. You decide "Yes, we'd love to come" then have to cancel. You are asked by hubby to make a decision (or reprimanded for not being able to) and mumble away in your beard. The tears flow endlessly for many long years. The energy for joy and merriment and laughter has been sucked away long ago down the plughole.
Your loving man becomes impatient and says many things you're sure he wishes he hadn't. He has a life, too, he says. He groans and moans and yearns for better times but you can't help him because you can hardly help yourself. The statistics are high for breakups of marriages of those with CFS. A friend divorced after suffering with CFS for seven years, married to a man who gave up on her and his son and walked out of their lives for good because of her illness. And he was a pastor!
People can't work out why you always get sick before doing something important. "No", I once told a sister, "It's not demons. It's not necessarily spiritual. We're human." It is stressful getting out there again and being active. It takes endurance, perseverance, energy.
I am a pianist. I no longer enjoy playing because I played many times while I was ill and used up my reserves of energy. It's difficult to convince people that it's not all "in your head", that you are not a malingerer and that even the best desires to get up and go do not make your body work. Something is wrong in the energy stakes and it is not a pretense. We are not lazy.
To those who wish to know, really know - I say, don't jump to conclusions. Listen, really listen. Don't offer advice unless it's asked for. If an M.E. person says, "I'm ok" and not "I feel great", let them be. They are simply being honest not negative. And be especially aware of the extremely complex dynamics that are at work in their lives, influencing their spouses, families, relatives, friends. This is no simple matter of saying, "Pull up your socks, you sluggard." It is not easy fixed.
There needs to be understanding, encouragement, compassion, empathy, an ability to let these people be, to let them be who they are in their illness, to be given permission by those around them to be - whether it's ill or happy or sad or depressed or whatever. This may seem extremely negative to those of us who are of a religious bent. But allowing these people who have CFS to have it opens the door to the future, opens the door to wellness. Why? Because the pressure is off - the pressure to perform when extremely fatigued and nauseous and ill; the pressure to talk coherently when extremely confused and fogged in the brain; the pressure to walk when legs are aching and wobbly; the pressure to hang up washing when fingers won't hold the pegs; the pressure to sew on buttons when doing fine work flew out the window years ago.
When you have given for years
And you can give no more
And you give up
Because this "thing" has happened to you
(often because of giving)....
Hope for a true friend
Hope for a future
(The door will open and let the future in)
The future will (not may) be different than the past
It will seem bleak at first
It will not be so full of doing as being...
But to be is more important.
It will eventually satisfy.
DOCTORS SAID...
...rest and you'll feel better
...just pray about it
...I wish I could have seen you having that turn. That would have been so funny
...there's no more I can do for you
...here's a prescription for an anti-depressant
...it can't be that exhausting to sit at the piano and just wiggle your fingers
TESTS I'VE HAD
ECG
EKG (CAT scan)
EchoDoppler
Epilepsy test
EBV confirmed (mononucleosis or Glandular Fever)
Allergy to grasses, foods
Meniere's Disease - balance testing for middle
ear disease
Barium meal test for Hiatus Hernia
Vitamin B injections
Hormone levels
Liver function
Homeopathic treatment
Iridology
Cholosterol
AIDS
Iron levels
Hypoglycaemia (low blood sugar)
Hyperglycaemia (Diabetes)
Thyroid
Ultrasound tests for liver, gall bladder stones,
stomach problems
Virus tests - Coxsachie, Hepatitis, Ross River Virus, Epstein-Barr Virus (Mononucleosis or Glandular Fever)
SYMPTOMS
Chronic fatigue, difficulty in speaking, memory and concentration fog, hyperventilation, panic attacks, depression, breathing problems, blurred vision, extreme nausea, disassociation, tinnitus, low blood pressure, weak arms and legs, food allergies and intolerances, heart palpitations, insomnia. Chesty, phlegmy cough when weather changes, inner trembling and nervousness, weakness, headaches, difficulty in cognitive function, cystitis, aches and pains, colds, viruses, low blood pressure, restless leg syndrome, IBS (Irritable Bowel Syndrome), lactic acid formation in muscles when active, reactions to some medication whether natural (i.e. vitamins) or chemical (i.e. antidepressants, antibiotics), pins and needles in extremities, low-grade fever, exhaustion from day-to-day stimuli including car trips, caring for family, showering, dressing; post-exertion exhaustion.
© Hillie (Rightasrain Studios) 1996
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More Reflections from "Living with Chronic Illness" by Cheri Register
You can tough it out, ignoring symptoms at the risk of getting worse, or you can check out every little quirk, at the risk of hypochondria.
You can shop for miracle cures at the risk of harming yourself, or you can trust one doctor's judgment, at the risk of selecting unwisely.
You can keep your ailment secret, at the risk of deception, or you can talk openly about it, at the risk of self-pity.
You can ask friends for help, at the risk of becoming a burden, or you can hold fast to your independence, at the risk of isolation.
You can insist that your family treat you as normal and healthy, at the risk of denying them release for their own worries about you, or you can let them protect you, at the risk of becoming dependent and childlike.
You can strain your body to its limit, at the risk of harming yourself, or you can play it safe, at the risk of becoming an invalid.
You can live in terror of degeneration and death, at the risk of being immobilized, or you can look upon each good day as a special dispensation, at the risk of smugness.
You can insist on controlling the course of your life, at the risk of frustration, or you can "go with the flow" at the risk of passivity.
You can be angry about your fate, at the risk of bitterness, or you can focus only on your blessings, at the risk of self-delusion.
THE INITIAL PHASES OF CHRONIC ILLNESS (source unknown)
Diffuse symptoms that come and go over a period of time
Attempts to find psychological or circumstantial causes for these symptoms
False or partial diagnoses
Determination to make the symptoms disappear by changing habits or behaviour
Strained relationships with family and friends
Stress that is often not perceived as stress
Changes in mood and personality
Physical examinations and procedures that may be redundant, unnecessary or even harmful
Different and sometimes incompatible diagnoses and remedies from different specialists consulted
Relief at having an answer that seems definitive.
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