Published in InterAction 69, Autumn 2009
In our recent survey M.E. 2008: What progress? 43% of those who were bedbound and 36% of those who were housebound had been diagnosed with M.E. over 10 years ago, showing that a significant proportion of our members are living with long-term M.E. What advice and coping strategies can they offer to others?
Before we start, it’s important to say to anyone newly diagnosed out there, that not everyone who gets M.E. becomes so severely affected that they are bedbound or housebound for years.
The report of the CFS/ME Working Group to the Chief Medical Officer in 2002 said: “The likelihood is that most patients will show some degree of improvement over time, especially with treatment. A substantial number of patients will pursue a fluctuating course with periods of relative remission and relapse, while a significant minority become severely and perhaps permanently disabled.”
This article contains advice by, for and about those people who have long-term M.E.
“Find your own balance in life - a quality of life that you can live with within the constraints of your illness. Get help - if possible close family or friends. Don’t live the nightmare alone - do any and everything possible to find someone, be it a carer, social worker or next-door neighbour. Find a spiritual connection - recognise that you are more than just a malfunctioning body. Don’t give up - you will at times, everyone does, but remember this - what doesn’t kill you makes you stronger.” (Jeff, living with M.E. for 30 years).
“I'd say find interests outside of your illness. Don't become 'defined' by it. It's hard and I don't always succeed, but you have to focus on things outside yourself.” (Judith, living with M.E. for nearly 21 years)
“Acquire a lodger or summer visitors (we've friends with a summer caravan on our property) who are willing to treat doing-the-shopping (as opposed to paying-for-the-shopping) and running us around occasionally in lieu of rent.” (Araya, living with M.E. for approx 13 years)
“Plan ahead if you know you have something coming up so you can rest beforehand to build strength and then know you’re going to be ill for a week or so after. I’ve two things I live by: one is the ‘sod it’ strategy where if I can’t do something then sod it, it’ll still be there later to do; and two is the ‘while I can walk I’ll walk and while I can talk I’ll talk’ strategy. Through M.E. I have been paralysed so many times both physically and in speech, so while I have the ability to do something I’m going to give it my best and put up with the pain and tiredness because at least I can do it at the moment.” (Emma, living with M.E. for 26 years)
“Always limit activity. Do as much as one can, but never past the beginning of tiredness. Give in and try and find minimally active interests. Try and hang on to some outside contact, not easy. And stop feeling guilty about what you would have done.” (Bérénice, living with M.E. for 30 years)
“Pacing and not losing your sense of humour are the main things to keep you sane. There are pleasurable things you want to do sometimes that you know are going to put you in bed for a week so you have to weigh up whether it’s worth paying the price or not. There are times when you get a setback or even a relapse and you are facing the same hill to climb that you’ve already climbed before. That’s the time when your sprit gets dampened.
“Positive thinking helps but being surrounded with love from family and friends is the best thing to help you keep a network of support around you. This is one of the best coping strategies. Think positive, keep smiling.” (Edwina, living with M.E. for 10 years)
“Acknowledging and accepting ones situation and not fighting it allows one to make significant progress over time. This is an illness that one should not fight but accept and this is more likely to lead to gradual improvement.” (Colin has been living with M.E. for 28 years but now enjoys a reasonable quality of life)
“The early years were the worst, especially trying to look after a family but now they are grown-up, I do have more energy. Pacing is essential but not always possible; also some medications have helped me too. Have tried just about every alternative therapy out there but these did not really benefit me except having someone to talk to who actually believed I was ill. I now run a support group for people with M.E. and that has proved really worthwhile. We all understand one another’s problems and share information as well as offering mutual support and friendship.” (Carole, living with M.E. for 29 years)
“A serious belief in God and that he will heal me in his time. A family who love me no matter how grumpy I am and who understand as much as anyone who hasn’t got M.E. can understand. A group of friends who don’t care if I cancel last minute or see them and don’t say a word. A consultant who treats me as a woman, wife and mother and not just as a textbook case. Learning to let some colour into my grey life, that means having goals, planning for them and expecting to suffer the consequences but they are worth it – like a trip to the cinema or friends over for a takeaway.
I think the biggest step was acceptance and with that you find peace and grace. It does not mean giving in to the illness, it is accepting you have it, learning to live with it and continuing to believe you will be well again - but not using up energy denying it or fighting against it.” (Judith, living with M.E. for 20 years)
“It’s more of a case of having to cope - pacing is the main one I guess. If I have something important on (ie. with the kids) I save all my energy for that and accept that I’ll have a week plus of bad health. Another is just to accept some things don’t really matter or need doing. You have to be very selfish when you have long-term M.E, otherwise you would not have any life.” (Elaine, living with M.E. for 27 years)
“Physically: careful pacing; plenty of rest; only doing what is absolutely necessary; delegating jobs to others; using an electric wheelchair; saying no to people if their request is too much; asking for help when needed; a good diet with loads of extra vitamins and minerals; getting rid of all chemicals in the house and in personal care; sorting out sleep patterns using medication if necessary; taking supplements like dribose, choline, elegen etc. for energy production, boosting the immune system and brain functioning; sorting out finances – benefits etc.
Psychologically: accepting the illness; looking forward not back at what life used to be like; finding things that make life enjoyable within the confines of the illness; not striving to find a cure but accepting each day as it comes; removing as much stress as possible from life - including people who drag you down.” (Sally, living with M.E. for over 12 years)
“I have had to learn to be very assertive with friends and say how long I can talk and set a timer to go off two minutes before to let them know that we must wrap it up. I have to be the grown up and however much I am enjoying it, say - right that's enough I must rest now, you are welcome to stay and read and make yourself a drink and I will be out to see you again in 20 minutes but I must rest now - I find if I warn them of this option beforehand most are happy to stay.
I also have to keep myself extremely positive as self pity can soon spiral out of control, so everyday I write a gratitude list of all the good things that have happened to me that day which I am grateful for. It may be tiny things like looking at trees out of the window or seeing a pretty bird, or a friend calling on the phone, but when I write them all down before I go to sleep I can see my day has not been wasted as I have so many things to be grateful for and happy about. I also listen to a lot of positive thinking, affirmation and spiritual CDs and books and say positive affirmations to myself everyday.
I also write a daily to-do plan (from my childcare days I list it under the anonym spices - social, physical, intellectual, creative, emotional and spiritual). I write out a weekly plan of goals to achieve in each area. These goals keep me positive and focused on improving a bit at a time and moving forward.” (Corinne, living with M.E. for 34 years)
“The first necessary advantage is a companion, of any sort. There has to be someone to whom one can moan. After that a sympathetic GP, loving care, good neighbours, plenty of kind friends and a focus on recovery.” (Valerie, living with M.E. for 18 years)
“Approaching everything with humour often helps; it’s not easy but think of it as reverse psychology. Keeping dreams alive of things that you were doing before you got ill. They might have to be modified somewhat but there’s a way through everything as long as you don’t give up. Take baby steps to achieve what you want so it’s not too stressful or over whelming - so writing that novel or walking that marathon may take a hell of a lot longer than first thought, but as long as you get there what does it matter.” (Stacy, living with M.E. for 19 years).
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