M.E.

Some sort of explanation of what M.E. or Chronic Fatigue Syndrome is like

Most people that I work with will sooner or later encounter something that hasn't got done, and be given the excuse that "I'm feeling particularly crap at the moment".

I have M.E / Chronic Fatigue Syndrome.

Here, for anyone interested, is the best explanation I can give of what it is like.
I've written this because understanding the condition is so difficult. Understanding it is difficult for me - for friends and family - and for work colleagues.

In spring 2001, I had a standard-issue cold. After a week, I seemed to be recovering as usual but then many of the symptoms returned. Since then I have felt ill for every minute of every day.

It is pretty much how you would feel with a bad cold (except no running nose), or maybe like the first day you get out of bed after flu. Although this probably doesn't sound too "seriously ill", imagine it as a permanent rather than temporary state, and it sounds rather worse.

The prognosis is not good - statistics suggest a 2% chance of recovery per year, and I assume that I am likely to be affected for the rest of my life.

Very little seems to be understood about the condition and medical science is divided, often vehemently about causes, processes and cures. Many patient groups are adamant that it is a physical condition rather than psychological. Partly because this makes it easier to deal with dismissive attitudes - that it is simply stress or self-pampering – as suggested by the expression “yuppy flu”.
I am certainly affected by something – whatever it is – far more destructive than that.
I'm not sure that it's sensible to make the physical/psychological distinction. What makes most sense to me is that it is some kind of failure in the central nervous system that disrupts normal functions. Call this physical or psychological as you like!

Degree of disability seems to vary a lot between people. While some are more or less confined to bed, I manage to lead a relatively normal life. I suspect that this difference is largely explained by different ways of coping with the affliction.
Five years ago, if I felt like this, I would have gone to bed and got up when I felt better.
Since the feeling better bit no longer seems to be an option, I have learnt to carry on my life through the illness. Although this is arrogant, I believe that if I was a less energetic and positive person, I might well be confined to bed myself.

Two of the many theories I have come across have helped my understanding.

“Reverse Therapy” suggests that M.E. is caused by a malfunction of the Hypothalamus gland, which is part of the body’s regulatory system. It suggests that the malfunction is triggered by some event in life such as illness or emotional stress. The illness could even be a result of some kind of “defence mechanism”, whereby the body shuts down to prevent you from doing too much.
By identifying the trigger, the patient can adapt their life to avoid it, thereby allowing the gland to return to functioning normally.

I can sort of relate this to my experience and I know that some things definitely increase my symptoms. For me, these are normal work/stress things, while fun things make me feel less ill.

Here is the part where it’s most difficult to retain sympathy!

While trying to work makes me feel awful, riding my bike / going to the pub / sitting in the sun, make me feel better!
OK, this sounds just like normal life, but the scale is quite different.

I know it is an impossible task to explain that I am too ill to work, but quite able to go for a 100 mile bike ride.
I can only tell you that this is the case.
If it helps, I work for myself and no-one pays me when I’m not working!

I have learnt to cope by working for a few hours until I am exhausted and then doing something else.
Often I am so tired I can hardly stand up when I finish work, but I have learnt that if I am positive enough, I can still do something active.
Whether I am more able to ignore my illness when I am doing something enjoyable, or whether I am actually then not so ill, is not clear.
Reverse Therapy theory may suggest the latter.

Another explanation I came across recently is interesting.

The suggestion is that the problem lies in the “message” part of the nervous system - something like this.
Normally, say you want to run. Your mind tells your body to run and your legs start running. When they have had enough, they start sending messages to the brain that it’s time to stop, so you stop.
The theory is that there is something wrong with this system and that the “too tired to keep running” messages are being sent all the time when, in fact the legs aren’t tired at all. Thus you feel permanently exhausted. Actually your body is fine, it’s just that the nervous system is supplying bad information.
This theory would explain how I can be so tired I can hardly move, yet if I am positive enough, still get on my bike and ride 50 miles.

Since I don’t really look ill and apparently lead a pretty normal life, most people I know probably think my illness comes in the “a bit under the weather” category.
I guess part of the reason for writing this is to try to explain it is rather more serious than that.

In the first paragraph, I described my normal state of health as being similar to “the first day out of bed after flu”. While you feel bloody awful, you don’t have to achieve too much because tomorrow you’ll be a lot better, and by the next day you’ll be fine.

Take that thought away and it pretty much describes how M.E. is for me.

MORE THOUGHTS 2005
Having re-read this some time after writing it, it seems to suggest that the only thing that makes me ill is work, making it sound rather too much like "lazy bastard syndrome".
Here's a random list of other stuff I can't do.
Play pool - lining up a shot is far too exhausting
Listen to new music - An important part of my life - I'm OK with stuff I know, but anything new is just too much trouble.
Change a lightbulb - OK so long as it doesn't get stuck.
Find the chilli/oregano/olive oil if it's at the back of the cupboard.
When I’m feeling worst, Massive effort is required to do simple tasks –eg reply to a straightforward question.

Makes no sense, I know!
It also reads like I'm perfectly OK when I'm not working - In fact I would probably no longer recognise what "perfectly OK" is.

Here is an optimistic note from summer 2007
New thoughts July 2007 I now look on my illness as a problem with my endochrine system – maybe a thyroid/adrenal malfunction. Since M.E. is anyway defined by having an unknown cause, maybe the two are not mutually exclusive, but just a different description for the same problem. Some people believe that most cases of M.E. are related to endochrine problems.
In October 2006 after advice from a friend, I saw a deregistered doctor, Dr peatfield who specialises in Thyroid problems. Tests then showed low levels of Thyroxin and Cortisol, both of which play significant roles in the body’s regulatory system. Reading as much as I could about how the Endochrine system worked, left me very optimistic that Cortisol in particular could cure me. I took varying doses of both for about a year, but unfortunately found no improvement. Dr Peatfield eventually came to the conclusion that there was no more he could do for me. (I would, however recommend him to anyone reading this in a similar position – he does cure people…JohanneFoxley@aol.com is his secretary,)

At the end of June 2007 I decided to give up trying to work. Although I have been working reduced hours for the last six years, I have always tried to do as much as I could.
My business may survive without me – it may not.
I definitely am less aware of my illness as a result of not trying to work.

An interesting incident…….My wife asked me to connect her laptop to our printer, which produced the usual minor complications and I was suddenly ill and exhausted again.
It seems that my symptoms are definitely stress-related, but not in the usual meaning of stress. Major incidents such as a big customer going bust with huge debts to me, or being taken seriously ill while abroad, have no effect on my health – it is normal everday things that seem to destroy me.

In March 2007, I was taken ill in Austria with a severe pulmonary embolism, which is a blood clot between heart and lungs that kills a lot of people. I was in intensive care for a few days and needed an operation from associated complications. I mention it here, only because it emphasises the severity of my M.E.. Even in intensive care, I never felt the embolism was anything like as serious an illness.

March 2008
My optimism of a year ago that my illness could be treated with drugs to adjust the endochrine system proved unfounded. After a year taking Thyroxin and / or hydrocortisone, there has been no improvement and my doctor sees no mileage in prolonging that line of enquiry. I think I have to accept that I have come to the end of the road for medical treatment. The remaining possibility is that my condition is caused in some way by my environment – either physically or pyshcologically. There is some evidence for this in that I do almost always feel better when I’m away from home. Of course, the only way to test the theory is to remove myself from my normal environment which is not a simple thing to do, as of course, I have responsibilities to family, friends and work. On the other hand, if I have come to the stage where life is pretty much not worth living, and a complete change of scene offers the last chance of changing that,then maybe it’s a nettle I have to grasp.

June 2009
I am writing this from Crete, where I am spending a couple of months cycling and pottering about. Last Spring, I came here for 10 weeks and it did me good. While it was obviously pretty inconvenient for family and work, of course the world managed to keep turning without me and I got back home in much better health, and I'm sure was better company for it. While here, I think I came to accept how ill I had been, and that getting away for a while was maybe a lucky escape from the state I was heading for at home.

So after working through the winter, I have come back for another dose of the easy life.

I know from my website statistics, that a lot of people find their way to this page, so for what it's worth, here is my advice for anyone who is in a similar situation.
First - accept that you are seriously ill - you need to fully accept that yourself.
Many people will think that it is not a "proper" illness and that you really just need to pull yourself together and stop moaning. I think that many people think this of their own illness as well. I have probably only recently stopped making excuses.
You don't want to descend further into incapacity than you can avoid, but you do need to admit you are "properly" ill. Not quite a case of wearing your disability with pride, but don't pretend to yourself or anyone else that you aren't really ill.

My only other advice would be to say that physical exercise may well help. It is definitely true that the normal rules for what you can do physically while feeling so ill, do not apply. My guess is that some people's M.E. will be triggered by too much exertion, but for many more, it will have been something non physically tiring. So I expect not everyone can exercise without harming their condition, but my guess is that most M.E. sufferers would benefit from physical exertion, even though to begin with, it may seem absurd to contemplate.

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