This is still a work in progress. I have a great resistance to writing so I thought that posting it might spur me on to finish. Any comments about this article would be most welcome! (my e-mail: [email protected])
First let me put in a disclaimer, this is how to cope with M.E. if you are John Baldock. Other people in different situations with different severity or type of the illness, or even a different personality type, will find different ways of coping. Hopefully though there will be something in this article that could be of use.
I have had M.E. now since about 1996. I started to slip into it while I was doing a GNVQ Science course at collage, though I may have had it at a low level for some years beforehand. Through the course I became more tired by things and I also gradually paler. Despite this I kept pushing myself, cycling to the collage and back every day, going mountain biking, playing basketball, etc. In short I was trying to fight the tiredness by bloody mindedly carrying on with what I would have done without it. (Do not do this! I put myself deeper into M.E. by not allowing my body to rest when it needed to).
In the end I managed to finish some parts of the course, like the maths, but not the whole thing. I got to the very last day but could not finish all the assignments, though I must stress that my tutors were wonderful and did all they could to try to help me to do so.
Afterwards I became more and more ill as I kept overdoing it until bit by bit I made myself slow down (It took some years to stop myself from overdoing it). My GP, Dr Godfrey, understands M.E. (which is lucky as there are a frightening amount of GP's who do not) and has helped to guide me. I have tried different treatments and at the moment I am with three great people: Andrew Wright (a GP and M.E. Specialist who gave me supplements and referred me to Raymond Perrin), Raymond Perrin (an Osteopath who is treating me by manipulation, lymph drainage and other things), and Dennis Gore (an extremely knowledgeable and helpful pharmacist), whose combined efforts have been gradually giving me more energy.
First and foremost do not feel guilty about being happy! It may seem like a strange thing to say, but when you have a big illness/disability it is easy to feel that because you have lost so much you should not feel happy about life. This can be compounded by getting disability benefits, "after all" you may say to yourself "others are paying for me while I am in this condition, it would not be right to feel happy about it too". I have felt this very same thing, though luckily it never took a strong hold on me.
The reason it is ok to be happy as well as chronically ill is simple, life is great! We humans are very good at forgetting this but the world in which we live is the most amazing thing. There is so much around us that we take for granted but is staggering in its complexity, beauty and wonder. The ability to think, read, listen to music, use a computer or simply to talk to another life form that is the product of roughly four billion years of evolution are just some things that deserve to make anyone happy.
It is very easy to fall into the trap of regretting that which you have lost instead of cherishing that which you can enjoy. Having just lost so much it is not generally possible to think about it logically, forget your woes, and start enjoying what you have. Having said that, with the support of others it is possible to achieve this philosophy in the end.
I would heartily recommend counselling to aid in this process, be it from a friend, an informal support group or a professional counsellor. I was lucky in that my mother acted as a counsellor for many years as I recovered from my bad experience of school (I was home educated from 9 years old, but that's another story). This gave me a very good base on which I was able to rely when dealing with M.E.
As an aside, don't believe it if someone says M.E. is a psychological illness; that is completely untrue. But also don't let that put you off counselling as it can really help you to start enjoying life again.
Another trap you can fall into is feeling that you have no worth to society (by society I mean world society, not just the country you live in, we are all in this together after all). There is no simple answer to that one, but consider this, who has a greater worth to society someone who works for the arms trade of a country that sells arms to oppressive regimes or fights in illegal wars, or someone who does no work but talks to their friends and family and helps them through their difficulties?
If you are in this trap then think about what you already do, being careful not to discount anything (for instance do you play games, if you do them you are bringing entertainment to others. Are you helping to raise a family, etc.). Also think about other people and if you feel they are benefiting society as a whole or not by doing their job. I can think of a number of people in this country and around the world who I feel would be doing the world a favour if they quit their job and did nothing at all.
It is important to cut out as much stress as possible. This is because stress, even at low levels, saps a surprising amount of energy. With that in mind try to not to worry about things too much, after all if you can't change it then there is no point in being stressed by it. Again this is far easier said then done, but it is something that is good to try and achieve. The help of others, professional or informal, can help with this.
Also consider other forms of stress. For example I had to give up online gaming, not because I was getting annoyed with it or anything, I thoroughly enjoyed it, but because the stress of being in a competitive situation of that nature got my adrenaline pumping (i.e. I got stressed) and it was tiring me out too much.
For a great article on relaxing check out: Relaxation Techniques