This article written in 1999.
Please also read the followup article Experiences in a rehab hospital: The Followup, for the complete picture.
| 9:00 am | Wake up |
| 9:30 am | Breakfast, get dressed |
| 10:00 am | Gymnasium |
Doesn't sound much like a typical morning for somebody with severe CFS and fibromyalgia? It's mine, four mornings every week.
Let me introduce myself - I'm usually called Ricky, I'm 24, and I've had CFS and fibromyalgia for four years now.
I spent a month last year in a rehabilitation hospital - Cedar Court. Following this stay I returned for three mornings a week as an outpatient. I also spent a further week there last December for a 'top up'.
Why try it?
I've read Jacqui's book 'When I Am Weak' about her experiences in 'The Graden' hospital with unsympathetic medical people. I've also heard of several other people who've had bad experiences in rehab hospitals and ended up sicker than when they started. So why take the risk? I'd tried everything else and it seemed like the only thing left to try. I'd been getting sicker for four years and, by 1998, I was at the point of being bedridden and unable to care for myself or live independently - I felt that I had to do something.
Beginnings
Before I agreed to go into the hospital, I made sure I had a pretty good idea of what to expect ... I asked my doctor what would happen if I 'crashed', and received a clear and acceptable explanation. I had his assurance I could discharge myself at any time if I wasn't happy with what was happening.
So, armed with these assurances, the phone numbers of good friends who could 'rescue' me if necessary, and lots of silly socks with which to proclaim my identity, I proceeded.
The first few days consisted of meeting all my doctors and therapists and getting assessed by them. In the process I managed to forget everybody's names, and there were a lot of them to forget ... I had a rheumatologist in charge of my case, a general doctor, two physiotherapists, an occupational therapist (OT), a dietician and a psychologist, not to mention the myriad of nurses and aides. Those days of getting assessed were truly exhausting, and it was a little tempting to run away, but I kept trying to remember that it all had to happen in order to set the program in motion.
Nobody, at any time, denied that I had a continuing and serious illness. My physios and OTs understood when I explained that the problem was not that I couldn't do something as much as that doing it would send me into a crash - they didn't relentlessly encourage me to do more. Yes, they were encouraging and positive, but they also reminded me that I'd have to do things again that afternoon and to make sure I didn't wipe myself out in the morning.
After the first few days of being assessed, each day contained two sessions of physiotherapy, one of relaxation, and one of occupational therapy. These sessions were an hour long and, at the start, I spent most of each session lying down because I couldn't sit for an hour at a time. I was also taken to and from each session in a wheelchair until I was able enough to walk there on my own.
Therapy
In addition to the above program, I saw a psychologist every second day. The psychologist, along with all the others, believed that CFS and fibromyalgia were real and physical disorders. These sessions with the psychologist helped me deal with issues that the diseases caused - such as depression, stress, coping with pain, and so on. I did find this useful, especially in dealing with the issues that just being in hospital caused. For example, the few times I came across people who I felt weren't supportive, the psychologist helped me plan ways to talk to them and straighten out the communication difficulties.
Physiotherapy started off with very gentle exercises while lying on a mat. For example, one of the exercises was to contract my stomach muscles while lying on my back - I started off managing to hold the muscles tremblingly taut for 3 seconds. Another exercise was on a 'Kinetron' machine, like a stepping machine you used while sitting down; on my first day I managed just eight steps at the lowest resistance.
There were relaxation classes to help people deal with the stresses of chronic pain and illness. When I complained that the imagery in the classes 'didn't work for me', the wonderful staff made me a personalized relaxation tape I could use in my room instead! I still use it to help me get to sleep for my afternoon rest.
For occupational therapy, I worked in a specially designed woodworking area. It brought back memories of primary school and was the highlight of each day! The area was constructed so people could use the benches sitting or standing, and the carpenter who worked in there was a marvel at matching abilities to projects. During my month, I designed and slowly constructed a slope board that I still use to prop my books on to make reading easier.
Much to my relief, the kitchen people were great about my very restricted diet (no dairy, no gluten, no eggs, no MSG, no caffeine, no preservatives). They gave me the regular menus to choose from, but said if I wanted something different to just turn it over and write a note on the back! The few times I accidentally ordered something that had a forbidden food in it, they came and told me instead of just feeding it to me. I honestly can't say enough wonderful things about them.
Of course, not everybody was brilliant. A few of the physio aides who didn't know my case specifically were 'too encouraging' - they'd keep encouraging me to do more when I was working at my limits and reminding myself not to over-do it. But they also shut up when I asked them to. To have everybody being perfect all of the time is too much to ask.
Improvements!
When I arrived at Cedar Court, they provided a wheelchair because I was unable to walk the 80 metres from the front door to my room. Four months later, I was able to walk 20 minutes around the block!
The frustrating thing is that I don't know why it helped. I think it was one of those situations where the combination of things just really works. I don't think any ONE of the parts would have done anything, but together they did. One of the ingredients was the medical personnel at the hospital knowing about CFS/fibromyalgia, so I felt secure that if I did crash they could deal with it.
The other major ingredients were lots of monitoring and very small increases in the amount of exercise I did each session. The physios encouraged me to literally do one or two steps more, or ten seconds more, of each exercise. And they were there beside me twice every day to adjust the amount and intensity of the exercises. There is a gap between 'amount you need to do to increase your capabilities' and 'amount you can do before you crash' - it's just really really tiny! I don't think there's any chance I could have stayed in that gap long enough to improve without the in-patient support.
For me, when I'm in a more acute phase of the CFS or when there's stress around, that magical gap disappears altogether. At these times I can't do anything to control my health and I'm crashing. When I'm in a slightly more fibromyalgia-ish phase (ie, when the pain gets to be more of a problem than the fatigue) and when I'm in a less acute phase, that gap is there. The healthier I am, the bigger the gap is.
Afterwards
Now, nearly a year after I first went in to Cedar Court, I'm living by myself in a one-bedroom apartment in Carlton. I manage nearly all my own cooking and shopping, with friends helping a few nights a week. The council's home help comes in to do the vacuuming and other heavy chores on Tuesdays and Fridays, but I do most of the washing up and tidying myself. I adore living on my own, being able to do things when and how I want - including kicking visitors out and going to bed when I'm too exhausted to entertain them.
I'm still very sick, but I'm also very able. The difference in quality of life between living in the back bedroom at my parents' house and living in my own apartment is immense. Cedar Court was incredibly hard work, but it was also the most useful thing I've done for myself in the four years I've been sick. If my rheumatologist thought I needed to go back there, I'd have no hesitation at all.
Please also read the followup article Experiences in a rehab hospital: The Followup, for the complete picture.
