Bed-bound for nine years
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Living with an invisible illness
Always having more energy than I knew what to do with, life was an adventure and each day was one promising something new.
On leaving school, I trained as a registered nurse but I also pursued other interests: medical illustrating, a little journalism, painting and I especially loved working in the garden. The days were never long enough to fit everything in.
I dreamed that I would have my house welcoming, my garden thriving and my children and I would share a journey where I taught them about life, how to be decent, caring people, in a home filled with fun. I wanted to spend time with them.
But that all changed in 1994. A bout of flu seemed to leave me with symptoms that worsened rather than improved.
For hours, night and day, my body shook violently, my teeth chattered and sleep eluded me. Every tiny sound would be too loud and I would feel it as a physical pain shooting down my spine.
I spent my time in a darkened room wearing eye shades as light hurt my eyes. I was too weak to turn over in bed, use the toilet, wash or even see the five of our children who were still at home.
Suddenly some foods I had been able to eat, chemicals in the environment and odours all began to affect me negatively. It was a very scary time and yet some of those around me thought I was just being lazy or was crazy. That I wasn’t sick at all. Perhaps I was seeking attention? Believe me, there must be better ways to get attention.
The youngest of the children at that time were six and seven years old. They really needed a mum, but it was confusing time for all my children. They could see I was sick and didn't understand why others couldn't.
The family tip-toed around the house, bewildered at what was happening. It was only outsiders who thought I must be depressed and had taken to my bed.
I don’t blame them, they just didn’t know about CFS/ME. They had never heard of it before and neither had we. They didn’t see the green liquid that ran out of my eyes, the wide flat sores that appeared on my chest and the struggle to just hold it together as I got through each five minutes.
The exhaustion was more than tiredness. It made it hard to breathe at times, to even think, and the nausea was constant. My sheets were brown with whatever was coming out through my skin and I literally felt poisoned.
The first trip to hospital in the early stages saw me leave with a diagnosis of depression. It was hard going, but unbelievably, I was not what I would have called depressed. I knew I was very sick and just wanted to get well.
A diagnostician who I saw privately finally diagnosed Chronic Fatigue Syndrome/Myalgic Encephalomyelitis after admitting me to hospital again and running a myriad of tests.
It was a huge relief to have a diagnosis but numbing when he said there were no medications he could prescribe to help and it would probably last two years. At that time, I didn’t know how I was going to get through the next five minutes.
My husband’s employment regularly took him away from home so we soon relied on a raft of nannies, which usually stayed a year or two before we needed to find another.
I spent a total of nine years bed-bound.
Twenty years later, I still have CFS/ME but have made progress. Last year I reached my goal, which was to water ski again. It was a pretty quick ski and I haven’t mastered jumping the wake again yet, but I chalk it up to a win anyway.
I still have to be careful with how much I do, though, and have days where I’m not far from the couch.
My daughter and my son also were also diagnosed with CFS/ME. My son was diagnosed early on in the illness, thanks to a doctor who knew what to look for. I found a medication that he responded to and he slowly made progress. He is now in full-time employment and engaged to be married.
The youngest of my twins has been housebound with CFS/ME for 13 years, and it also came on after a bad flu. She has not been able to attend school since she was 13 and she is now 26.
To help her meet new people, I started a support group for others in our area that have CFS/ME.
Quite incongruous, really, as I was never a person who wanted to attend a support group. But it has been the best thing for both of us. We have both learnt a lot and made some amazing friends. It has been a really positive experience and I would encourage anyone out there to look for a support group.
If the one you go to isn’t your cup of tea, look for another until you find one where you fit. If you aren’t well enough to get to a group, use the telephone, if you can, to keep in contact.
The message that comes back from those at the group is how nice it is to be with people who just know what it feels like to have this illness. They are totally accepted and no longer feel alone.
About 85 per cent have faced being stigmatised in some way. Some have found it hard to find a doctor who understands the illness. Some have struggled with being perceived as lazy or crazy. For others, the pressure to find a job or get on with life because they look well enough to do so is stressful.
Most people with CFS/ME can look quite well once they have mastered how much they can do in a day without bankrupting their energy reserves. There are over 5000 peer-reviewed studies showing this as a bio-medical illness. The latest research points to it being autoimmune/neuro-inflammatory.
Recently a young man with CFS/ME lost his uncle to cancer. It was very sad time for all of them. He said his uncle, in the last week and a half of his life, was very sick, as sick as this young man regularly is. There was palliative nursing care available for his uncle in that time. There isn’t anything for him.
There are thought to be 20,000 New Zealanders with this illness and about 25 per cent are severely affected. Not many, you say?
It is estimated 3000 to 4000 New Zealanders have Multiple Sclerosis, a serious neurological condition. Approximately 11,500 New Zealanders are legally blind, approximately 2000 New Zealanders are under specialist care for HIV and all of these get more funding for research and access to care than those who have CFS/ME.
It would be wonderful to see this change, as it is a frustrating situation for sufferers who are trying to get help and the doctors and health professionals who really want to be able to help them.
I haven’t given up on the dream. I have missed a lot of my children’s lives and they are all adults now but I am really proud of each of them.
Each day is a chance to put something back into our lives again, to make new memories.
I still dream for more though. Not just for me - for everyone who has CFS/ME.
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