Sunday, 2 October, 2005. I get up around 7.30am and get ready for work. My throat hurts a bit, but I’m otherwise ok. I’d had a busy weekend, going to the physio on Friday for an issue of been having with my neck, then visiting with family (my mum and sister were in town. Mum and I dyed our hair), shopping, brunch, the usual. Maybe I picked up a bug in the process … or I have probably just been snoring (which would also explain why I am still a bit tired).
As the day goes on I realise I’m snapping at people, and I have a headache. By lunchtime I’m feeling exhausted and I can feel my temperature is on the way up. By 2pm I’m at home, asleep in bed, with a fever. I barely wake up for 36 hours.
Monday afternoon, when I wake with a full bladder, I am unable walk the width of my small flat in 1 go, having to pause for a rest at least twice on the way to the bathroom, and again when I get there. The return trip of about 10 metres takes about 10 minutes and has me sweating and nauseous. By the following Sunday I can walk to the bathroom again, but I needed a rest before returning.
Returning to work, I find I am so nauseous from even the slightest exertion that I spend most of my day judging the distances between the various sinks and buckets in the lab – where is the nearest place to vomit? If I was sick now, could I get to the sink in general microbiology in time, or would I be better going for wash up, or out to the loo? I have no temperature regulation and I shake terribly after the slightest exertion. My head hurts and my brain feels foggy and slow.
I don’t remember if I took more time off or if I talked to my manager right away, or what happened exactly, but at some point it is agreed that I would be put on light duties and reduce my hours to allow me to rest. I had a lot of time owed in lieu of overtime (AKA: TOIL. it’s a way of achieving a form of flexitime) so I wijustll use up a few hours of that each week until I am up to working full time again.
I spend over a month doing the streaking and reading of plates. Just walking into the building from my car is often too much, so I have to arrive early to allow a few stops between the door and my section of the laboratory. My shaking is so bad, with weakness in my arms and hands, that some of my colleagues get my plate and tubes out of the incubators for me in the mornings. If they think I’m not up to it on a given day, they also handle the positive controls for me to prevent contamination of the lab environment.
Sometimes I manage to leave before the usual 8 hours. The manager has to put the hard word on my team that I cannot be asked to help with anything else if I have already done 7 hours that day. There’s too much work, so although I keep to light duties, I do still accrue a little TOIL some weeks.
Every day, I go home from work and rest. Most of the time, the only activity I do is walking between car and lab, lab and canteen, canteen and lab, and back to the car, and climbing the flight of stairs to my flat.
I am extremely lucky to have been allowed to spend so long taking things gently at work, and it may be the biggest reason why I still have the amount of function that I do now. Research shows that resting in those first few months are vital to long term recovery and/or preventing deterioration. [Linky]
Eventually I return to a reduced version of full duties (using the one chair that we have in each room as much as I can, doing lighter jobs in the filling room, like environmental samples and cheeses), at some point the following year I have worked my way back up to lifting the heavy samples and standing/rushing around all day. I can just manage it, but I usually find it difficult to do much else.
I have visited the doctor repeatedly over this period, and had tests for anything and everything, at least twice. According to every test over the last 15 years, I was and still am a textbook example of a healthy adult.
I’d had some odd neurological symptoms on the year prior to becoming ill (they were never investigated, and I still wonder if it’s worth looking into 15 years later. At the time, my boss worried I had a brain tumour – my doctor dismissed the idea), but I had been pretty healthy and fit otherwise, and mostly still am. Now, in 2020, I am still a perfect specimen of health, by every test available to my GP at least. My blood pressure, which has always been on the low side, sits around 95/60 most of the time, getting up to 115/80 if I’m overdoing it or crashing. Every blood marker falls nicely in the middle of the “healthy” range. My resting heart rate is usually around 70 bpm, but something as minor as walking to my ensuite or talking on the phone will often send it up to 115 bpm with the effort. I had a heart rate monitor tell me to slow down once when I was standing and making a stir fry.
I was lucky, in that the doctor I was seeing recognised a few things I said as being peculiar to ME/CFS (I craved water, not like thirst, but like one might crave pickles or chocolate. I also noticed that the bigger muscles were more tiring, so my fatigue wasn’t about efficiency but energy output), so she didn’t dismiss my symptoms as being part of my mental health issues. I absolutely refused to entertain the possibility that this was ME/CFS, and wouldn’t accept it when I did get that diagnosis. It took me years to call it CFS (“my mystery illness” was all I was willing to call it for a long time), and even longer to accept that I couldn’t push my way out the other side.
If I could go back to 1 October 2005, what would I say to myself? I don’t know. Other than giving her advice on how to live with this illness and sticking within her limits, I don’t know. I would tell her that she needs a really good internet connection because she’s going to want to binge watch a lot of tv in the near future and her current plan isn’t enough. I’d tell her to buy a lot of pajamas and fewer pairs of high heels (although the knee high boots with the ribbons you see in a month or so, and that expensive pair of stilettos you are unsure about buying in 2007 will be your favourite pairs for years to come, but the sensible and plain black pumps will barely see the light of day). It’s too late for much else.
Get grief counselling to help you come to terms with this new life and what you have lost. Don’t be afraid to ask for help. Get mobility aids and the likes sooner rather than later. No, you can’t ride your bike from Western Springs to Auckland city; you won’t even reach the end of the street before needing to sit down and consider getting a ride home. Massage and hydration help symptoms more than almost anything else.
If I could go back even further, to October 2000, I’d tell her to enjoy her life, while she has one. To dance and sing, and seize the day because it won’t last long.
Think about what you want in life. Don’t waste these few healthy years on people and things you don’t enjoy.
You should definitely take a long hard look at the friends you have made recently too. Go and give them all a hug. They’re all excellent people and deserve to hear it. You may find it odd now, bit those guys at partied with the cameras, and the one with the long hair who likes to run around parties naked, and soon to be new flatmate, and her current flatmate with the silly nickname, the “keg fairy” who you find weirdly terrifying, the woman in the chainmaile bikini, and so many other you know from the LCR or KAOS parties … they’ll be the people who you can rely on in 20 years, when you can no longer rely on yourself.
And buy Netflix and Apple shares.