I tend to prefer to emphasise the things that help, but after a pretty rough day, perhaps it’s as well to share things that make CFS worse:
Tropical Cairns is as wet today as the coast that cuddles it. I put on two pairs of trousers, a woollen jumper and a cardigan. This isn’t new. I used to wear a lamb’s wool jumper and jeans at the hottest part of the year in Cambodia. Cold weather is to me what an oven must be to a paddle pop. My circulation is poor. My limbs go numb very easily and fibromyalgia becomes worse. Poor blood circulation is a common CFS / ME Symptom
I have always been the kind of person that Mum would say, takes 'waifs and strays' under my wing. It has taken a lot of emotional energy. I remember my friend Eddie telling me that when he was training to be a life-saver, the first thing he was taught was how to fight off drowning people as they instinctively grab you around your neck. He could only be effective at a distance and when his physical well-being was under his control. It struck me at the time that could be a useful analogy in life. I try to avoid gloomy, mean or drunk people these days or people who drain me. I have so much less energy, I don’t want to exert it willy-nilly now, do I? When I notice I am draining myself with unproductive thoughts or behaviour, I try to bat those thoughts away or address the behaviour.
Cigarettes and Alcohol
Alcohol, fatty foods, caffeine and cigarettes wreak havoc in my body. I used to happily drink a good deal on a celebratory night as any friend will testify. A few months ago, my sister Lucy had cause for celebration, and, wanting to perform for her in a sense I suppose, I thought I’d have just a baby attempt at what average society deems normal behaviour. I slowly drank one and a half pints of cider, a small glass of wine and three cigarettes (Stop rolling your eyes, Mum... I only smoked the cigarettes, who would drink one?! ). Before that evening, I had had the best few days of health I had experienced in a long time but that weekend I completely crashed. I have been more careful since then and I have never had a cigarette again. (Mum smiles).
Too much exercise
When I went through one of my fanatical periods of exercise (apparently a sign of a predisposition for the CFS/ ME condition), and was training to do my first Triathlon, my sister Chloe used to beg me with tears in her eyes, to stop training. I thought she was over-protective and nagging at the time. I now get it that I always pushed too hard and that is one of the lessons CFS is here to teach me. Exercise is still a controversy amongst the CFS community with research suggesting that after exercise, brain circulation can get worse, unlike what happens with healthy people.
Post-exertional malaise or the customary severe rise in symptoms known as a ‘crash’ after exercise is a trademark of CFIDS/ CFS / ME. No exercise at all can lead to deconditioning which has severe consequences of its own. The biggest problem I have in walking the very slender path between too little and too much exercise, is that at the time I get into auto-push pilot and think maybe I will be okay. I have been trying to keep up in proper yoga classes again (I did a full month course with CFS before which led to an almighty crash) and it is only 48 hours later I really suffer. I have done that twice already this trip (suffered crashes as a consequence of so much exercise) but luckily, I haven’t been down for more than a full day on each occasion.
For Al and I, travelling together has proved to be the greatest of challenges! I don’t use the word ‘great’ as I would like to mean it. The movement, the changing, the noise, the planning, the DETAILS, the Departures, the arrivals, the meetings, the expectations, the travel books... the shirking of responsibility on my part as it all becomes way too much, and the ensuing pressure on Al and marital relations..
In May, Al and I had the fabulous idea of travelling from Rome to Cinque Terre to Pisa, to London, Stratford Upon Avon to Paignton back to Stratford, then London again, then La Rochelle to Saintes (here we rested and breathed with my parents for two weeks...thank God for this saving piece of planning) to Bordeaux to London, to Rome (stayed at a convent, that part was good for our cheeky souls!) to Venice to Rome a-bloody-gain to Bangkok to Phnom Penh to Yangon to Moulemein to Phnom Penh to Bangkok to MELBOURNE AT LAST.
We tried to combine work and pleasure. It was great to see my family, but I barely got to see anyone and spent only twenty minutes with my best mate after a series of cancellations due to crashes along the way...It took me more than a month after coming home to be able to go to the work place even for a few hours a week. I was very ill and irritable. I have been up and down since then, but it feels like always a little bit more ‘up’.
Frowning and concentrating at a laptop for more than 30 minutes.
Ah, I always forget this until it is too late! Now, even, I haven’t had a rest since starting this article and if I don’t in a moment, a screaming headache and pain in my nose and left eye begins and my brain gets extremely foggy. I get irritable and unable to work out what I am reading or writing. I need to check I am breathing properly, not frowning and looking away from my station constantly. When my muscles strain, my pupils remain enlarged even when light is pouring in which causes a lot of pain. I promise myself online now that I will have a quick rest in ten minutes..
This is just the worst. It takes up SO much energy. If I worry or have an emotionally-charged argument, my throat immediately begins to swell my head goes fuzzy. With poor cognitive powers, I become defensive or protective like a wounded animal. As I am sure my Mum would be happy to point out, the description of a wounded animal has probably always held some truth; just another thing the CFS is here to teach I suppose. (See How I have Been Getting Better with CFIDS to see some ways I reduce stress)
Loneliness and isolation
Before going to the Doctors (with encouragement from Al) with my jumbled heap of wacky symptoms that led to a diagnosis, I was very alone with this. I had been to so many hospitals and Drs in Thailand and Cambodia when I lived in Cambodia. I had so many different illnesses that had no apparent connection. I had convinced myself that I had a brain tumour as I could often no longer remember the simplest things or put sentences together the way I wanted to. I clearly remember standing in the supermarket and beginning to cry as I stared at an aluminium tin in my hand with no idea what I was holding it for, or which market I was in, or why. I could no longer listen to my friend’s voice messages as I would lose the thread and have to start again. I would forget what friends had told me and I became embarrassed to hang out with them as I could no longer keep up with them in conversation. This was the loneliest I have ever felt. I was away from home, so it was hard for anyone to judge the change in me.
This is why Doctors NEED to understand this illness to a better degree. The second Doctor I saw - an old fellow in a lop-sided bowtie - claimed that CFS wasn’t actually the name of an illness, just a name given out by Doctors when they couldn’t find out what was wrong with you. Just because you don’t fully understand something, doesn’t mean you need to deny and ignore all evidence for its existence now does it? I am amazed at the ignorance of the profession at times. On the other hand, I can see how Doctors are so pressured for time, they cannot read up on all new findings. When reading out my symptoms that I had carefully compiled in a list, he asked me to hurry up, we only had a few minutes... If I hadn’t already had a diagnosis from a more helpful young Doctor (Anna Paslow) then I don’t know where I would be today. Apart from helping me connect with my friends and family again, this is why this blog is so important to me. We need to create awareness and get funding for research.
Ah, there are plenty of other things but this is what I can think of for now. I am so lucky to have great professional help now in a superb Psychologist (Mary Spina) a Doctor and a Physician who have shown great respect and care and to have Al to cuddle up to every night even when my head is a messy, fuzzy ball. I can’t wait to be back in Melbourne with her.