The Situation
I have multiple disabilities and chronic illnesses - the main diagnoses are Chronic Fatigue Syndrome and Fibromyalgia but I have a double-handful of other ones to accompany these. The doctors say I will probably never recover completely from my diseases, especially as some of them are genetic and therefore life-long. I don't much like doctors, funnily enough. I don't pay much attention to their prognoses either, since they vary from "You're insane and just need counselling and some exercise" (wrong!) to "You're gonna die" (wrong too!). They just can't make up their minds, it seems!
This document is an account of how the whole thing happened. Please keep in mind that it's written primarily so I can give it to new doctors and get them "up to date" with my history in the shortest time possible, so if you're reading for "interest" that this might not be the most fascinating thing ever, OK?
At Birth
When I was born, I was several weeks premature, so the hospital put me into a humidicrib - unfortunately I caught a hospital virus while I was there. The virus stripped the entire lining out of my gut and I couldn't digest stuff for quite a while after, I'm told (it was up to a year for dairy products - I was raised on say formula).
The doctor I have seen who knew the most about CFS is pretty sure this virus was the actual start of a very-slow-onset CFS, which was sub-clinical for my childhood but still there, and all the things that went wrong with me since were a result. I am trying to stay open-minded on this possibility and not assume it's true or that it's false, since it's essentially unprovable.
Primary School
In primary and early secondary school, I had a lot of what was eventually diagnosed as "abdominal migraines" which I think meant my stomach hurt a hell of a lot but nobody know why. It felt like - but wasn't - my appendix, as for as they could tell.
I'd have "bouts" of this, usually late at night, and often (but not always) at a time when things that frightened me were going to happen - like having Physical Education was on the next day. I could never keep up with the other kids in physical education and always came last in everything! Everybody thought I was lazy and unfit but looking back, was possibly more pre-CFS signs?
1989 to 1991
Back in 1989 - when I was 14 - I got a virus much like glandular fever (called mono or mononucleosis in America). It stayed around for several months and then I apparently got better.
There were little hints that something was wrong around this time too. Aside from the glandular fever, I remember that around 1990 my elderly grandmother took me to the Royal Melbourne Show and I ran out of energy for walking around before she did. I was ashamed and the whole family joked for months on and off about how unfit/lazy I was.
In the middle of 1991 I was again sick for several months with a virus much like viral meningitis. I was in hospital for several days, and away from school for over a month. I also had memory and behavioural problems for the rest of the year which was ascribed to a result of the temporary brain problems the virus caused. This caused school problems so bad that I was actually given an IQ test and saw and educational psychologist to check I hadn't been brain damaged - the tests came back saying I scored at or above genius-level on my IQ tests so it was assumed that I was OK.
1992-1994
By the start of school in 1992 I seemed to be well again, and finished year twelve with very high marks. I went straight to University, starting a course in Cognitive Science (artificial intelligence, a branch of computer science) doing a double-major in linguistics and computer science, combined with some philosophy.
1994, my second year at La Trobe university, was the best year of my life. I blossomed and had a "real" social life for the first time ever, I studied 2nd and 3rd year subjects together and stretched my mind which overjoyed me, I had friends, I had a car. Life was good.
But it was the end of 1994 when I got really badly sick. It started on Christmas Day, 1994 - I remember exactly. First we thought it was the flu ... then by late January when it hadn't gone away I was diagnosed (by a blood test) with glandular fever (mono) again ... then I just kept getting worse and at the end of 1995 was diagnosed with Chronic Fatigue Syndrome (CFS) and a few months later Fibromyalgia (FMS) was added to the list.
The CFS, at that time, was making me overwhelmingly tired, I had many food sensitivities I'd never had before, I felt nauseous and dizzy a lot of the time, I was sensitive to bright lights and loud noises, and I had cognitive (thinking/memory) difficulties.
1996
During 1996 there was some recovery when an environmental nutritionist doctor treated my gastric symptoms. Unfortunately, this didn't translate into a general recovery - despite my gastric symptoms improving, I got slowly sicker all year, punctuated by getting sicker fast every time I caught a sinus infection (I had about 4 of them that year, all quite serious and requiring multiple bouts of antibiotics).
In December of 1996 I started to get more and more nauseated and occasionally throw up. Crippling nausea stayed on until January of 1997 when I was taken to hospital and re-hydrated with a drip because I had got so nauseous I'd stopped drinking. After several days, I was released into my parents' care and had to move back home to live with them.
1997
During 1997, still at home with my parents, I was diagnosed with anxiety/panic disorder and started on treatment for that which proved very helpful emotionally.
At the end of that year I was also diagnosed with Neurally Mediated Hypotension (NMH) - brain-caused low blood pressure when sitting and standing - and started on medications for that. Finally I didn't have to lean on the walls and watch black spots in front of my eyes every time I stood up!
1998 - first half
1998 dawned with me still living with my parents and still very sick. At this point my cognitive symptoms were so bad I couldn't read and had trouble even talking - I was bedridden except for shuffling to the bathroom and back when absolutely necessary.
April of 1998 I spent 4 weeks as an in-patient in Cedar Court Rehabilitation Hospital. I did physiotherapy, occupational therapy, relaxation therapy and lectures on pain-management and self-management. This had an excellent effect on all my symptoms but mainly my strength and endurance. I increased my walking distance from 40m to about 200m, for example.
Directly after this, I attended as on outpatient at Cedar Court for another 4 months. At the end of this time I was able to mostly care for myself and could walk 2 or 3 blocks even!
1998 - second half
In August of 1998, joy of joys, I moved back out of home and into my own flat (significantly subsidised by my parents). This was a big occasion and many long-held plans came to fruition. The flat was just 2 blocks from a gym and I organised to walk there each morning to do my exercises (prescribed by the physios at Cedar Court) so I wouldn't loose all the gains I had made.
However, despite dutifully following the physiotherapy regime and eating right and looking after myself as well as I could, I seemed to be still in a slow decline in my health. Personally I think that Cedar Court helped with the secondary problems of my illnesses - for example muscle wastage from being bedridden - but not the underlying problems.
Somewhere previous to this time, the "main" problem had shifted from being the fatigue to being the pain. I still had both to a large degree but the pain is worse now. Prior to this point the fatigue had always been the worse of the two.
1998 - December
In December of 1998 and then again in June of 1999 I spent a week or two in Cedar Court for a "top up" but neither trip had much effect. I was still getting sicker.
During my last trip to Cedar Court I hassled my doctor about the severe and untreated pain that I had. At last, he gave in and referred me to a pain specialist to get some more decent pain treatment. The pain specialist was a trained psychiatrist and a total godsend and still treats me today, way along in 2005! He helped me to properly medicate my anxiety disorders as well as give me anti-epileptic medications for the jerking of my legs and for the pain, and later on stronger medications for the pain also. This has had a positive effect on my day-to-day functioning but again is treating secondary things and masking symptoms rather than getting to the heart of what is happening.
1999 to 2000
In late 1999 I got a new primary doctor, somebody who used to have CFS herself and really understood what it's like. She's found some problems other people didn't pick up (like major hormone deficiencies) and these were treated, but unfortunately although my blood test results improved, there was not much impact on actual symptoms. She also counselled me about coping with life and my anxiety disorder which helped a little.
During 2000 she diagnosed me with EDS (Ehlers-Danlos Syndrome, hyper-mobile type), a diagnosis which was agreed upon by my pain specialist. EDS means my muscles are floppy and my joints over extend, along with severe musculo-skeletal pain. It's essentially a fancy name for being double jointed all over and having it hurt.
2001 - First Half
In April 2001 the pain in my muscles and joints, almost every day was so bad that I spent much time curled up in bed crying and wishing I could become unconscious so I could avoid the pain. One day over Easter (late in April) I could not cope anymore and called my pain specialist's emergency number. He called back a few days later saying there was no point making an appointment, he wanted me in hospital. I was in hospital for nearly six weeks, coming out near the end of May 2001 on a narcotic twice daily to keep the background pain levels down, and another stronger narcotic medication to take at times of elevated pain. It was an unbelievable relief to have something finally that helped the pain, codeine and Panadol/Tylenol had stopped working years ago and I had been without any pain-killer that worked since then.
2001 - Second Half
Late in 2001 I moved house again. The actual move was very emotionally stressful for various reasons, although friends came out of the woodwork to help me so it wasn't physically tiring for me. Just the stress of moving knocked me about significantly. The new house was also bigger, forcing me to walk further from bedroom to recliner chair to bathroom. I slid further down the ability scale, reduced to crawling or using the manual wheelchair to get around my new place.
Around this time, I was diagnosed with Mycoplasma Hominus and also a query Chlamydia Pneumoniase systemic infections. This was cheering at first because I believed that a few months of antibiotics would make me significantly better ... but once I researched the treatments thoroughly I realized that getting rid of Mycoplasma infections which have been around a long time is extremely, extremely difficult. It takes years of high dose antibiotics, and then a low "maintenance" dose probably for years and years more. Nobody knows if you ever get off the antibiotics and have the bacteria stay in remission because the Mycoplasma tests haven't been accurate for long enough yet.
Because of the high possibility of a "herxheimer" reaction - getting dramatically worse when the antibiotics are started as the bacteria dies off and releases poisonous toxins - the antibiotics were started a bit after I moved house to give me time to settle down. Sure enough, I went downhill a lot when I started the antibiotics, but was never it seemed after 4 months of antibiotics that I got any better on the medications so the doctor put them up to see if it helped. Unfortunately, it just made me worse yet again when we re-tried the antibiotics again some time later. He took me off them a few weeks later. So much for that "cure".
At that point I needed my manual wheelchair and somebody to push it for even small outings - when I could manage them at all. I was now too sick to walk down the driveway to the letterbox. I couldn't drive anymore. I needed a shower chair (like a plastic garden chair but safe for a shower recess) I can lean back against as well as sit on, somebody to help me shower, and a rest after showering.
2002
By 2002 I got my tilt-in-space (reclining) electric wheelchair, not a scooter but the sort you drive with a joystick. What a true miracle to my quality of life that was! I don't think anybody with severe pain/fatigue disorder, especially CFS, Fibromyalgia or EDS, should be without one.
Unfortunately I had also had a bunch of myoclonic seizures in (up to 5 hours long) in February and again in March and July. No real cause was ever found except the all-encompassing "CFS" so the pain specialist bumped up my anti-epilepsy medication doses several times until these long seizures stopped.
Early/Mid 2002, I had an laparoscopy to search for endometriosis, as my severe pelvic pain was not getting any better. Unfortunately, they didn't find any which means they couldn't fix it. It took over a month to get over the general anaesthetic, sleeping 22 hours a day and feeling like the perpetual "lead suit" I felt like I had was heavier than ever.
I never got back to the 10% health mark I had been at before the laparoscopy. By late 2002 I needed about 5 hours a day of PCA (helper) care - they did just about everything except be me. They got breakfast, lunch and dinner for me; they showered me; did all the chores; wrote letters I dictated; filled in forms for me; did the laundry; did the washing up ... you name it, they did it.
2003 - Early
All I could do by early 2003 (despite another trip to hospital to have my meds revised) was lie in bed and do bed-stuff like listening to the radio, resting, playing a little on the computer and watching a bit of TV. I was using the powerchair about half the time to get to the bathroom and back and often needed help even transferring from bed to the powerchair, especially in the mornings, or if I'd overdone it. My sitting tolerance was virtually nil, I had severe weakness in my arms and legs. The only blessing (?) is that since they reviewed my meds the brainfog is much less, so I was still able to work on the computer and sometimes even read a book. This was very good. Sometimes I thought the pain is so bad I'd rather be to out of it to remember things, but usually I preferred being alert again. Things were seriously scary and un-fun though, and seemed to be going downhill faster and faster.
2003 - Middle
May, 2003 dawned with yet another trip to hospital. The hospital failed to provide the three-times-promised air-bed and I was forced to lie on a normal hospital bed which I found agonising (I have been using a waterbed at home for years because even nice home beds are too painful to lie on). Rather than come up with an appropriate mattress they gave me pain-killing and muscle-relaxant injections which didn't help much anyway. After 5 days they let me go home, but I was at the point where I would have discharged myself anyway, just to get away from that awful bed. The stay was to have been so I could catch up with several doctors - now being too sick to easily attend appointments travelling by wheelchair taxi - and have some tests done and attempt to find out what was "really" wrong with me and why I was getting so much sicker so much faster. Unfortunately very little of this occurred and I was left as ignorant as I had started.
Not being able to travel easily to appointments with doctors anymore meant that a search for yet another primary doctor had to be undertaken. And finding a doctor who will make house-calls every month or so, and not charge more than I can pay, proved to be impossible. I gave up finding any decent doctor by about September, 2003 and resumed - by dint of sheer willpower - travelling to appointments every second month at the hospital just 10 minutes drive away. It took me over 2 weeks to recover from each trip, but there seems like no alternative. Sucks.
2003 - Late
During 2003, my symptoms started to include bouts of paralysis of my legs and arms. Also bouts of extreme weakness where I can't, for example, feed myself because of arm weakness. This typically occurs in the mornings and by September 2003, I often needed to be fed breakfast by a carer.
At this point I was very very determined to get back some ability to go out in my wheelchair, as it had deteriorated to "completely house-bound" even with the powerchair, and only getting out of bed to use the bathroom and occasionally get a drink when I was parched, unfortunately. I spent weeks slowly building up my sitting tolerance and wheel-chairing ability, only to be slain by 2 winter viruses, with a bout of food poisoning in between.
In September of 2003, I finally qualified for a 12-week counselling course with ParaQuad teaching me thinking skills to help me deal with my disabilities and especially its progressive nature. I worked very hard at this counselling, doing lots of homework between (telephone) counselling sessions every week. Due to cancelled appointments when I was too sick for an hour on the phone, it took until several months into 2004 to finish the twelve appointments and I really didn't get much out of it which was really disappointed.
2004 - Early
By 2004 I was even more comletely bedridden, if that's even possibly. For toileting, I now used a female-urinal in bed whenever possible and a commode chair directly beside the bed when I was able to move that far. I could no longer go outside the house at all in my power-chair and had trouble being in it at all.
I had trouble with my eyes itching and hurting at the start of 2004. This was, at first, diagnosed as allergies by my GP but eventually I got frustrated and took myself to an eye doctor. He diagnosed severe chronic conjunctivitis caused by dry eyes, explaining that my eyes produce the wrong type of tears - they are too liquid and not sticky enough to adhere to my eyeball and lubricate it, so even though my eyes are commonly "drippy" with spare tears, they're actually not doing their job. I used drops to lubricate them properly which I use several times a day but still got about five more bouts of conjunctivitis during the first half of 2004 alone.
2004 - Middle
In May of 2004, I received a voice amplifier from the aids & equipment program because my voice was too weak to talk to a carer in the kitchen while lying in bed 5-6 metres away. A headband would have exacerbated the ever-present dull headaches, so I arranged to have the microphone for the voice amp to be connected to my glasses which looked strange but worked fine.
At this time, I was also having severe trouble with proprioception. I "felt" like I was sitting up even when I was lying almost flat down in my hospital air-bed, although I knew intellectually this was false. This made actually sitting up in bed very difficult and uncomfortable and I could rarely even lift the head of the bed to thirty degrees and usually left it within a few degrees of horizontal, raising my feet a little for comfort.
2004 - End
My situation as of Christmas 2004 is that I seem to be a tiny fraction better in some respects, and somewhat worse in others.
With the commode chair right up against the bed, I am managing to use that for all my toiletting needs - no more fiddling with "adult nappies" or the female-urinal, which is a huge relief! It's very difficult, and at times I hang on so long I think I'll wet myself while I'm gathering the energy to use the commode. But by and large it works and everybody is happy.
With feeding, I have some nausea and I have completely lost my appetite. There are some things that I can still manage to eat, things I find easy to eat even when I don't feel like it - the main two are home-made yoghurt and home-made apple crumble. Needless to say, we go through a lot of apples around here!! If I am eating when my carers are here, I nearly always get them to feed me - mostly out of necessity (especially in the mornings when my arms are not yet awake) and sometimes to conserve energy so I can use my arms for typing. I do, however, manage to feed myself a supper-time snack most evenings, and sometimes afternoon-tea too if they are cut into small pieces first.
My pain medications have been increassed again because things were getting very dire in terms of coping and the pain was making me so depressed I was verging on suicidal. As soon as the higher dose kicked in - bingo, the depression virtually went. Some of the other support medications have also been increased or changed, and - at the direction of Lisa, my naturopath - some supplements have been added to help deal specifically with my gut problems as well as with my CFS as a whole.
During 2004 I made several concerted efforts to increase my sitting tolerance. Unfortunately, no matter how slowly I increased the amount of sitting, and no matter how short the initial amount of sitting was, as soon as I started to get anywhere I'd either crash severely or contract a big infection which would set me back so far I'd be in the same place I'd started, all that work lost. Eventually, after doing all this four or five times (don't remember exactly) I pretty much gave up. I just sit out of bed when I feel able, and when I don't feel able I lie down.
Starting up Adults Need Smiles Too!, which I have done during the past six months, has been stressful but heaps of fun. It has definitely been the absolute highlight of the second half of 2004! I recently got to a point where it was too big to keep going alone, and now have a whole set of volunteers to help me with everything from editing to printing and mailing stories. I'm thriled with how everything is going and it's lots of fun to do, even if it is difficult!
You can catch up with the other highlights of the non-health-related stuff I did during 2004 in my Christmas Letter.
Conclusion
It still could be worse, much worse ... but on the other hand it's still getting worse. How do I know how worried to be? Will I get less sick one day? Will it kill me?
I know that it still scares me to pieces, and scares my friends friends, to see how sick I am. I wish I could get better, even only a little bit would make a difference.
Percentages
If you're interested in seeing it in percentages, check out the sheet below, which gives my scores on the Jill Moss Ability Scale through the years of my illness:
| Date | Scale Rating |
|---|---|
| [ Before I "officially" got sick at all. Not sick and yet never quite well ] | |
| 1975-end 1994 | 95% |
| end 1994 | 90% |
| [ Gradual slide from here until May 1997, when I started measuring using this scale. ] | |
| May 1997 | 35% |
| September 1997 | 35% |
| November 1997 | 38% |
| February 1998 | 25% |
| [ April 1998 - Rehab Hospital (progress was very slow (note dates) and four further attempts at the same hospital produced almost no results, however, unless I'd just come through an artificially bad patch like a bunch of infections ] | |
| Late 1998 | up to 50% |
| [ Aug 1998 - Moved out by myself ] | |
| Early 2000 | 30% |
| November 2000 | 25% |
| January 2001 | 23% |
| Feb 2001 | 20% |
| [ Right after 2 weeks in Cedar Court ] | |
| Feb 2001 | 30% |
| August 2001 | 20% |
| February 2002 | 15% |
| June 2002 | 10% |
| [ A month after a laparoscopy ] | |
| July 2002 | 5% |
| August 2002 | 8% |
| [ After a slightly bad drug reaction ] | |
| October/November 2002 | 5% |
| 2003 | approx 4% |
| 2004 | approx 3-4% |
