A Survival Guide to ME/CFS

I've spent the past twenty odds years quietly recovering from Chronic Fatigue Syndrome. For this reason, I'm often asked for advice by people who've been newly diagnosed with ME/CFS.

Below is a mini-survival guide that includes tips on what steps to take once you're diagnosed, how to look after yourself, and an important reminder that no matter how bad it gets, improvement – even recovery! – is possible. At the very least, you will get much better at managing this condition. There is hope :)

Marianne’s ME/CFS Survival Guide

Disclaimer: I am not a doctor. The information provided in this post is of a general nature and is not intended as a substitute for the advice of a medical practitioner. Please see a doctor for appropriate advice and assistance.

My story

I know what it’s like when you're first diagnosed with CFS (aka ME) and you have little idea of what is going on or how to manage this nebulous condition. Strangely, when I finally got a diagnosis, a part of me was relieved. At least now I knew what I was facing and that there were concrete steps I could take. CFS is a very tedious and bewildering disease, but there is hope.

In my mid-twenties, I caught glandular fever and then suspected Queensland tick typhus from which I never fully recovered. I went to work full time but, as time passed, I became more and more fatigued/feverish/unable to sleep and I developed random roaming joint and muscle pain. For two years, I refused to give into it which, I’ve now discovered, is the worst thing I could have done. I conked out completely in 2001 and was unable to speak above a whisper, sit up in bed or lift a spoon to my mouth. At the time, I remember thinking that my life, as I had known it, was over. I also thought to myself, I guess now is the time to write that novel, a childhood dream of mine. I began writing it in my head and as I slowly improved, with many relapses in between, I was able to get it down on paper and, later, type it up and finally get it published. This is what kept me going through those first few years.

There are several people in my family with varying degrees of fatigue. Apparently, researchers at the University of NSW have found that one in eight people have a genetic predisposition to getting CFS if something significantly ‘bad’ happens to them, e.g. an illness or car accident. This would explain the high prevalence in my family.

These days, twenty years on, I’m much improved although I still need to monitor my energy levels and not overdo things. So long as I pace myself, I can get a reasonable amount done, just not as much as I could have before I fell ill. Having said that, there are some people who recover completely. The earlier the intervention, the greater the chance of improvement, if not a full recovery.

CFS is a very individual disease. As such, people’s symptoms vary and their responses to treatment vary too. So finding what works for you is pretty much a matter of trial and error. I kept a diary of everything I tried and slowly and steadily made my way through a bunch of things, some helpful (staying off sugar and highly processed foods), others completely unhelpful (following the “Eat Right 4 Your Type” diet). I found it was best to tackle one area at a time so I didn’t get overwhelmed. Thus, I created an action plan with the following headings:

• Diet

• Sleep

• Supplements & medication

• Exercise

• Other treatment options

• Emotional support

• Government assistance/grants

Some people prefer to throw everything at their illness all at once. This is a perfectly valid approach, although, for me, I found my body took longer to adjust to things so trying too many things at once made me sicker rather than better. Also, doing one thing at a time made it easier to work out what was working and what wasn't.

Treatment options/lessons I have learned

Take from this list whatever is useful to you, and consult with your doctor and/or natural therapy practitioner.

Rest

I had to accept that my body is the boss. If it wants to rest, I have to rest. If I don’t, I pay for it later. I often find that if I overexert myself, I don’t feel too bad that day, but it hits me a day or two later. Apparently, this is very common – something to do with the mitochondria and the type of energy molecules that are produced. People with CFS have so little energy, they dive into their reserves more often than ‘normal’ people do, and the body takes much longer to replenish the reserve molecules. The best advice I was ever given is to try to only use 70% of perceived available energy because even if you feel energetic, this may be an illusion. So if I was all dressed up and ready to go out then I suddenly felt exhausted, frustrating as it was, I'd cancel my plans and stay home and rest.

Diet

Since CFS is a cellular disease, it affects every system of the body including the digestive system. With the help of a dietician, I was able to identify many food intolerances. Staying off these foods has helped enormously. Eating more green vegies has too. My energy doubled (no exaggeration) when I started having a plate of dark green leafy veg for breakfast every day.

If you decide to do an elimination diet, before you begin, consider asking your doctor to get tested for fructose malabsorption. Most elimination diets are high in fructose and can confuse the results if it turns out you’re a fructose-malabsorber. In my experience, most dieticians and doctors aren’t aware of the importance of getting this test done first.

I’ve found that overeating sugar and white flours can make me feel very tired; not necessarily that day but the next day. If I’ve had those products a few days in a row, it eventually catches up with me and I feel quite groggy. I’ve learned to stick to wholegrain foods, vegies, legumes and fruits that have a lower GI (glycemic index). I avoid artificial colours, flavours, preservatives and so called natural flavourings. They are not natural as they’re added to the food in very high concentrations which can lead to a reaction. I also react to gluten, dairy and soy so I keep off those as well. These last three are very common irritants for people with CFS.

Meditation

Muscle bracing (conscious and unconscious) is very common in people with CFS because their body is, for whatever reason, on high alert. Learning how to relax the muscles is incredibly important as the body heals best and releases the healing chemicals when in a state of relaxation. For this reason, I persisted in learning how to meditate. (I’m still learning.) If this is your thing, great. Hate the thought of meditating? Try it anyway, and keep at it. Just having a go a few minutes a day will make a difference to your health as the effect is cumulative. If you’re bed-bound with brain fog, try it for a few seconds. And keep trying. No one ever died of boredom, and you may even come to enjoy it.

Sleep

CFS can put your whole sleeping pattern out of whack so I'd encourage you to develop good sleep hygiene habits. For example, go to bed at the same time every night, switch off screens three hours before bed, stop eating three hours before bed, get some sunlight every day, and consider blankets rather than a doona. That latter made a big difference to me. People will CFS sometimes have difficulty regulating their temperature, and blankets are easier to peel on and off so you can cool off or warm up.

Exercise

Doing too much exercise is counter-productive for people with CFS. However, doing no exercise isn’t good for the body either. I listen to my body. At the beginning, when I was very ill, if I could manage a very short walk (say, one minute), I walked, but I was careful not to overdo it, e.g. I wouldn’t go on a walk two days in a row. These days, I do yoga and walk (longer than one minute!), but I still take my cue from my body as to how much.

Info

Very few doctors understand CFS so keep looking till you find a caring, knowledgeable one. Meanwhile, you will very quickly become an expert yourself. I highly recommend checking out the SA ME/CFS Society. They update their website with articles every day and it’s considered one of the most comprehensive ME/CFS sites in the world. http://sacfs.asn.au/index.html

Sarah Myhill’s website is also worth checking out. http://www.drmyhill.co.uk/

If you want to tackle things from the emotional side, you might be interested in Sasha Allenby’s book, Joyful Recovery from Chronic Fatigue Syndrome. She uses the Emotional Freedom Technique – EFT – which I have found helpful for decreasing the stress associated while recovering from a long term illness.

Support

No doubt, many people will offer you unsolicited advice or tell you to just ‘try harder’ to get well, or suggest it’s ‘just depression’. I was fortunate enough not to develop depression but a certain percentage of people with CFS do. Their depression is not the cause of the CFS, it’s in response to it. What I’ve learned is that people generally mean well with their advice-giving, but it’s me who knows my body best, not them. So I tend to seek out supportive, non-judgmental people.

State of mind

Your state of mind is very important to your recovery. CFS tends to hit people who are hard-working, conscientious and perfectionistic. They don’t want to give up so they push themselves hard. But now your body needs you to approach life differently. Be gentle with yourself and give yourself a break. You may also need to forgive your body for letting you down and ‘betraying’ you. Seeing you and your body as one and the same thing is a good place to start. Your body is actually making you stop so it has a chance to heal. It is trying to help you.

One particularly helpful piece of advice I was given was this: to regularly remind myself that I am not my disease. One way I did this was to observe how I described my situation to others. I stopped saying ‘I have CFS’ or ‘I am a CFS sufferer’ and started saying ‘I was diagnosed with CFS’ or ‘I’m recovering from CFS’. This helped me separate who I am from the disease I happen to be experiencing. Otherwise, the disease can become like a parasite and take over your identity. So remember: You are not your disease!

It’s good to carve out time each day to do something you enjoy where you don’t think about being ill. The important thing is to do something that feeds the soul, not the illness. It’s also a chance to really contemplate what you want to do with your life. I personally believe that even if you’re pinned to your bed, your life purpose will adapt to your limitations, often in surprising ways.

Conclusion

So … the most beneficial things I’ve found are rest, gentle stretching, meditation and eating well. CFS is one of those illnesses you can’t push through with sheer willpower. It has a mind of its own and you just have to give your body the best chance of recovery by adopting healthy habits, developing patience and, in my case, watching a lot of BBC period dramas :)

When I first fell ill, a friend of mine who’d had CFS for ten years said to me, ‘You think it will never end but it will get better.’ So I’m passing on this advice to you. The vast majority of people improve over time and, at the very least, you will get better at managing it. This is key. At the beginning, the Current You that is staring down the barrel of a long illness is just beginning to learn how to manage your condition. But the Future You will be so much better equipped with knowledge and experience. So don’t project the Current You into the future and despair. The Future You will take care of things when the time comes. Whatever happens, you’re going to be okay.

Wishing you all the very best,

Marianne

November, 2019