This section, which is still under development, has been created specifically as a means of facilitating and encouraging the exchange of information. A particular emphasis will be placed on positive information. This is because it is felt that so often recovery stories are not aired, as many who get better tend to forget or be too busy to pass on information on what has helped them. Whilst recognising how debilitating and severe the illness can be for some sufferers, we want this section to help others pass on factors that have been helpful to them. In this way, it is hoped, sufferers can benefit through managing to avoid finding things out the hard way! Above all, we want to show others that there can be 'light at the end of the tunnel.'

However, please note that any information provided represents solely the views and opinions of particular contributors, and not SupportME. The Web site does not recommend any particular treatments or approaches to the illness, although some external contributors may express an opinion.

In the section below, read accounts from other sufferers' experiences of the condition.



Peter Maggs is 50 years old, happily married with two grown up daughters. He has had ME/CFS for three years. He is a chartered engineer and is currently employed as a Project Leader with British Aerospace, Airbus. Here he tells his story...

It is now almost three years that I first experienced what was to become diagnosed six months later (in June 1997) as ME/CFS. So I thought it is about time that I tried to pass on some of my experiences with the hope that it might help some of you out there having to deal with the daily drudgery of this very difficult illness. What follows is much longer than first anticipated - apologies for its length.

How it Began
My Road to Improvement
Lifestyle Change
Dealing with Guilt
Pacing
Graded Exercise
An Understanding GP or Specialist
Cognitive Analytical Therapy
Relaxation
Things to Avoid
My Recovery Record
Beneficial Aspects
Summary

How it Began

It started towards the end of 1996. I was feeling desperately tired after my normal active lifestyle and no matter how much I rested the lethargy would not leave me. Maybe I had been overdoing it, in the past if I had exerted myself a rest always did the trick. I was up the next day, right as rain and ready to enjoy my job, family and sporting activities. This time though, resting would not cure, but I soldiered on. My first mistake. By Christmas 1996, I realised something was seriously wrong because I could not complete an afternoon's Christmas shop. I spent most of my time in coffee bars trying to build up energy to get back to the car park. A few days later I had what I can now describe as the worse bout of flu I have ever experienced. Both my wife and I were knocked out for several days. She returned to work after about a week - It was to take me a year, and even then only a few hours a day. The headaches were the worst. Like a clamp on the neck that went high into the head. [When later examined by the specialist, he must have been quite concerned because within a few days I was having a MRI brain scan - negative.] Getting up and down stairs was a major event. The TV was moved into the bedroom as there was little else could with my time except lie and rest and wait. Reading was impossible in those early months, as was any other form of concentration. Even gathering with people was so exhausting when trying to listen and concentrate on what was being said. Noise and brightness in those early days were also difficult to deal with. Muscle pain, mostly in the legs, like no other I had experienced before was continually present, not even after cycling up some of the steepest hills around Bristol had I felt like this!

My GP did not know how to deal with my situation, so I was referred to a specialist, Dr Stuart Glover. This was my first positive step. I had a thorough examination and he felt quite sure, that the prolonged periods of stress due to several family bereavements plus an active lifestyle, with little 'do nothing' relaxation, were prime inputs to my condition. Many blood tests followed and in May 1997 I was diagnosed as having ME/CFS. My confirming letter also said that there had been evidence of glandular fever in the previous year and that the Epstein-Barr virus had been detected along with the Cytomegalovirus. The diagnosis suggested that the whole thing could have been triggered by a respiratory virus (through flu). 1997 was a dark year for me, the uncertainty of it all. Could I return to work, if not then where would my income come from? How would I, my wife and family, cope with it? Fortunately I was lucky, my employer put my mind at rest, put no pressure on me, and allowed me to 'soft start' back to work in January 1998. Starting with only a couple of hours a week and gradually building up to where I am today, about 25 hours. I have made a slow and steady recovery. Yes there have been setbacks - this illness is at its most dangerous when you feel good. On these occasions there is a very strong desire to 'get back to normal' and try and do things that you enjoy. But gradually, through adjustment to your lifestyle, you improve. You can't see it on a day-by-day basis, but when you look back in large slices, you realise you have. For example, I could not have written this letter a year ago, I did not posses the concentration or the will.

My Road to Improvement

So what have been the 'key enablers' towards my getting well? Or rather should I say, adjusting to what I call 'the invisible illness'.

Lifestyle change

Top of the list is lifestyle change. You have to, you will not get well if you don't change. You are forced into this - it is the first thing that hit me. In my previous life I was an energetic sort of person, focussed only on what physiotherapists call 'doing mode'. That is achieving enjoyment through 'doing' and not 'being'. For example, cycling, walking, table tennis, camping, activity holidays, DIY at home and in my job. [I could always find an excuse not to watch TV or sit still.] My happy family life plus my participation in these things gave me what I wanted and made me happy. All this has to change and is the key to getting into 'being mode' (more about this later). More observing, sitting, watching, helping, listening, achieving through warmth, and enjoying the journey rather than the destination. This is not easy for those of us who have been used to an active lifestyle and the benefits this brings. But you are forced to change, so you might as well just accept it. It sounds obvious, but don't look back either. Stop saying to yourself, 'I wish I could that'. Look forward, think positive. An understanding family and friends Not all of you will be as lucky as I am in having a very supporting wife, family & friends. Remember, like any illness, it is worse for those closest to you. How my wife puts up with me sometimes is beyond belief!

Dealing with Guilt

Of course you will always get the doubting Thomas and you will feel the guilt as I have. More so in the work place than having to accept you can't help with the chores at home. But if people really know you, then they will understand. For those that do not know you, then the more aware you make them the better it is. Look at it from their point of view - what they see is a perfectly able looking person, probably with a bit of a tan, because you have spent so many hours resting in the garden recovering from a short walk that other people take for granted.

Pacing

Next is pacing. I never had to bother before, all I did was step on the gas [as Seb Coe once said] and go! Even after three years, there is a tendency to slip back into old habits but, in general, I have found the '50% rule' of benefit to me. Whatever you feel you can do or would like to do - half it! It takes practice and you will fail sometimes but in general it helps. I suppose the therapists would call this lowering your expectations, [but] that's exactly what you have got to practice.

Graded Exercise

This is now advocated by most medical specialists and has its virtues providing you take into account several factors:

• Don't try it initially unless you have nothing else to do that day
• Don't take any notice of what others are doing, we are all different
• Don't exercise with fit people like those found in gyms
• Don't expect too much, remember the 50% rule
• Do keep your activity regular
• Do build up slowly
• Do listen to your body
• Do take into account you energy usage that day, work, reading etc

I started with the swimming pool. Not actually swimming at first, but floating and just getting used to the environment. The first time I swam I tried the breaststroke and my neck and arms pained for ages. Build up slowly, even now if I go into a pool I don't set myself any firm targets, I wait to see how I feel first. Move on to walking in the same way, although I found cycling a lot less strain on the legs. Chose a warm day when the muscles are at their best and do not bite off more than you can chew. Vitamins/food In the early stages of this illness I believe I gained benefit from vitamins C0Q10, B, E and plenty of vitamin C, although there is no substitute for fresh fruit. As for food in general, I have found it is important to eat only fresh food with no fancy diets except for avoiding preservatives and E numbers where possible. I drink only herbal teas, filtered water and avoid caffeine almost completely (but still enjoy a cup of decent French coffee on the weekend!) All the books on ME/CFS tell you to avoid alcohol. Well, I have tried to avoid it, but cannot abstain from it. I still enjoy the pleasure of drinking red wine and get away with it providing I tell myself that the benefits from those flavonoids the wine contains, will offset any downside effects!

An Understanding GP or Specialist

An absolute must for many reasons:

• Foremost, you want a diagnosis; otherwise there is so much uncertainty.
• You want somebody 'on your side'
• You need an understanding ear
• You made need one to claim benefit

You may need to convince your employer. I have a good GP but unfortunately he was not sufficiently equipped to support me. The best thing he did was to get me to see Dr Stuart Glover.

Cognitive Analytical Therapy

My specialist advised this after we reached an impasse with my improvement. I have just completed a course of CAT which took about 10 months (and could not have been done with health insurance). CAT will not take away the muscle pain, headaches, poor concentration etc or give you your energy back but it will equip you with some 'tools' to allow you to cope better with the consequences of ME/CFS. Unconventional medicine Aromatherapy - I still get a lot of muscle pain both in legs and neck and find Aromatherapy very beneficial. Apparently, in a ME/CFS sufferer, the toxins/lactic acid builds up rather more quickly than in fit person, hence the muscle pain (this is why those Tour de France cyclists get the rub down every night!). The treatment I receive consists of gentle massage with essential oils, (selected to suit you). It is all performed against a background of relaxing music and scented air. In the early days I found the treatment actually knocked me out for hours afterwards. Today though I come away feeling much relieved of pain and very relaxed.

Relaxation

I have a relaxation technique, which I practice for 20 minutes daily. It is only a simple audio cassette, but it helps, every little helps with this illness. Hot baths - this is my quick fix treatment for leg muscle pain first thing in the morning and after driving, standing and walking. The bath tends to take energy out of you but definitely eases muscle pain. But it helps me. Keeping warm -I find muscle pain is less when I am warm. So my strategy for cold days is to wear thermal underwear. Again, it doesn't take the pain away or give you energy, but every little helps. Mind over matter - Some people say its all in the mind and some just intimate to me that if you put your mind over it, ME/CFS will go away - I do not believe that mind over matter alone will return you to normal. It is a combination of many things that eventually leads to improvement and acceptance. In my case there has only been one occasion that my mind has been so occupied with the present that I have seriously put my mind over this illness and not felt the pain and headaches. This was for my Daughter's wedding. It had been concerning me for some time how I would cope with a 12 hour day. As it turned out the happiness of the event completely overshadowed my condition and I got through.

Things to Avoid

All drugs have side effects and as I have found to my disadvantage these can continue even after the drug has stopped being taken. This has been the case with a particular painkiller I took for some time (name supplied upon request) which gave me, I believe, the condition of tinnitus. Yes, I know, 12% of the population get this condition at some time in their lives and I shouldn't be too concerned. But for me tinnitus is an aggravation that causes further neck/headaches and is exacerbated by concentration, reading, and noise. So much so in my case that the only way I find I can get to sleep some nights is with my Walkman radio on. The same goes for the anti-depressants. From these you get a false view of where you are and apart from that you get stomach upsets and bowel irregularities. As with all these things its a question of balance, we have to decide for our own particular set of circumstances - but in general my advice would be to stay off the pills. It goes without saying that stressful situations, however light they may appear to others, must be avoided at all costs. Muscle tensions lead to pain.

My Recovery Record

Since I struggled back to work for a few hours a week, I have kept a record of those hours spent at work since January 1998 to the present (see graph). Obviously, this is not the only way to measure improvement, but for me I had to keep a record for my employer so why not use it as a way of feedback to myself of my improvement? There are a number of observations I would like to draw your attention to before you make your own interpretations: The hours spent at work are not necessarily all productive. In fact in the early months of 1998 it was all I could do just to get drive to the office and be there in the buzz. Gradually, near the end of the first year, I started taking on some small tasks (not a major project). These involved more social interaction and concentration which I could build upon. The blips you see at the middle of both 1998 and 1999 are due to the time of year (summer). I was using more energy outside of work - enjoying the outdoors, garden and busier social life. Quite simply, when you add this energy to that needed for a part-time job you hit the Mr Micawber syndrome and crash out. That is, there ain't enough energy to go around! So what is my strategy now, for the future? Well obviously to build on what I have achieved to date, while resisting always the temptation to revert to type. In the immediate future I shall continue with my 25 hours per week and then in the spring of 2000, review with my specialist and company doctor the next step of increasing my hours. I had done this before in the spring of 1999 - as you can see from the graph, I increased to 32 hours but could maintain it only for three or four weeks. Next time I hope to get it right. Nice and slowly does it!

Benefits of Illness

How can there be any benefits to having ME/CFS? If you take a philosophical approach, some good always comes out of something bad. ME/CFS is no exception. For me there are a number of things I would never have done like:

• Learning to cook
• Learning to observe more
• Time to think more
• Be more effective with my energy levels
• Closer to some family members than before
• Time to rekindle old relationships
• More enjoyment from what I already have.
• More appreciative, I took my good health for granted before.
• A better person, I think!

Summary

This illness, I think, is about accepting limitations, pacing yourself and learning to live with a finite amount of energy. Most important of all is deciding where to use this energy. Unlike before the illness, there is simply not enough energy for work, play and relaxation. You must decide what lifestyle you want. Quite simply, in some case this may mean that you are unable to pay for your mortgage, which in turn may mean a significant lifestyle adjustment. But one thing is for sure, as an ME/CFS sufferer you will now place a lot more emphasis on health than material things. How many of us would dearly swap all our accumulated possessions just too simply see the back of this invisible illness?

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