On cross country or swimming sports days, probably the athletics days too, I’d always choose a pain in the belly as my complaint. Mum wouldn’t be able to say, ‘Well, you don’t look sick.’ And as a further stroke of genius, she couldn’t prove that I didn’t have one.
If she took me in to the doctor, they’d feel my belly, I was sure, but they wouldn’t be able to see, nor prove in a test for that matter, that I didn’t have a pain like they would if they looked in my mouth and saw that my throat wasn’t actually sore.
It never worked. I was sent to school every time. Except for the day when I had to defend myself that I wasn’t like the boy who cried wolf and that I hadn’t eaten too many Easter eggs and we only just got to the hospital before my appendix burst.
I’ve been researching a little lately about chronic fatigue syndrome (CFS).
I never knew anyone with it and I didn’t know anything about it. Had I met anyone with it years ago, I may have wondered if it was the adult version of my pain in the belly. Aren’t people who have CFS just tired? Well, we’re all tired…
For as long as I can remember, when I get tired, I don’t feel well. If I’m really rundown, I’ll spend days unwell in bed. I thought that was normal. Anthony pointed out that he didn’t think it was. Well, I told him, I’ve been going to the doctor for years when it happens and they always say (at which point in my defence story, I’d curl my lip, tilt my head to the side slightly and put on a sneery voice), ‘It’s just a virus.’
I went to bed on November 13 last year and I stayed there for 12 weeks. I was dizzy and had blurry vision. I had a headache that paracetamol or ibuprofen didn’t relieve and nausea that the doctor’s anti-nausea medication didn’t help with. I woke the household with my coughing fits. I was short of breath and had a pain in my chest. I had no appetite and no energy to eat food, let alone prepare it. I couldn’t see the words on a screen or page, couldn’t concentrate even if I could, and at times when speaking, couldn’t think of the words I wanted to say.
I spent 16-20 a day sleeping and would wake unrefreshed. Anthony would put a bowl of muesli beside my bed when he left in the mornings. When I woke and saw it, I’d long to be able to reach it, but it felt like there was a mattress on top of me. It would be hours before I finally managed to sit upright enough to get the bowl and eat, and once done, I would be so exhausted from the chewing that I’d put the empty bowl back on the bedside table and wonder how on earth I was going to lie back down. I’d be stuck, slumped against the bedhead, until finally I would let the top half of my body fall to Anthony’s side of the bed so that I was lying at some sort of right angle.
No.
Chronic fatigue syndrome is not just being tired. I’m sorry I ever thought that.
It’s true, CFS is often characterised by overwhelming fatigue and debilitating exhaustion after any sort of exertion that is not fixed by rest. But it is a complex illness that affects many body systems.
And it’s sad that the lack of diagnostic medical tests for CFS has allowed people to believe that the illness could be imagined or used as an excuse by someone who, for reasons unclear, wishes to ruin their own life.
To diagnose chronic fatigue syndrome, doctors need to exclude every other possible disease or illness that may be causing symptoms and use accepted diagnostic criteria.
And that’s what they’ve done for me these last three months.
You can read more about CFS here if you’re interested, It’s a good overview and really easy to read.
Initially I wanted doctors to diagnose another disease or illness because anything else would surely have a cure. A script I could get filled. But as test results kept coming back without concern and it looked more and more like CFS, the diagnosis became less important to me. It wasn’t going to change anything. I had to work out what I could do to help myself and how any of the symptoms could be managed or treated.
One non-local GP referred me to a specialist who rejected the referral and said I need to speak to someone who specialised in CFS. The GP didn’t know of any. I Googled and rang 15 different specialists in Melbourne, Geelong, Bendigo, Ballarat, Wangaratta and Albury. None were taking new patients. (GP mustn’t have had Google).
Another GP suspected the CFS is caused by the Epstein Barr (glandular fever) virus reactivating in my body every time I get run down.
A third GP wondered if the CFS was psychosomatic, caused by internalising trauma. She suggested seeing a psychologist and getting an MRI.
A naturopath gave me herbs and supplements to stop the virus from replicating and to get my cells making energy again.
An acupuncturist said the pattern of energy was wrong in my body and that until that was corrected, I wouldn’t be absorbing any nutrients in my small intestine and that’s why I’m exhausted.
A dietician said I shouldn’t need any herbs or supplements if my diet is adequate.
All said I have to rest. Most days, that’s about all I can manage.
I joined some CFS groups on Facebook and promptly left them when I realised they were mostly a chance to feel heard by others who would understand what a bad day looks like.
I listened to podcasts about recovery stories.
And now I’m going to write. Because that’s got to help too.
Writing by Larissa Patton 