Action for ME is another brilliant resource.
Information, support, you name it.
You can join this group for £15 a year.
Thursday, 29 November 2007
Useful resources for Chronic Fatigu Syndrome : 1
If you are a fully paid-up member of the CFS/ME group (that means us!) then you may have come to a point in your life where you are sick to death of 'healthy' people. It can become really difficult to deal with people who make assumptions about you from their own perspective and have no idea how you feel. They can always ask but the problem with that is that it takes energy and mental focus to explain to someone how you feel. It can become exhausting and that is just what we don't need. If you are at this point it may be worth considering trying to get in touch with other people who are in the 'club'. It can help in several ways:
1. Being ill is a very isolating experience. Maintaining friendships is impossible when you are ill. Sometimes we can feel that we are the only person in the world struggling with this illness. Finding out that you are one of many thousands of people in the same boat can be liberating.
2. Don't take this the wrong way - but it can be good to know that there are people worse off than you are - and there always is. Conversely, there will be people who are better off than you are.
3. Information. Yes - we can have too much when we are exhausted and our mental faculties have diminished. Try to limit yourself and just take in a little at a time.
If you are in the UK I recommend The ME Association. Their web site is informative and well set out. You can use it as a resource on its own or become a member. The site has highly readable sections describing ME, discussing treatments and so on. There are links to local support groups and and telephone support line. If you are housebound and isolated this can be a real lifeline. When you have the energy - take a look. If you want to join it is £18. This gives you access to further services. If you have been ill for some while this may be out of reach, but you can still use the web site as a resource.
Take care,
1. Being ill is a very isolating experience. Maintaining friendships is impossible when you are ill. Sometimes we can feel that we are the only person in the world struggling with this illness. Finding out that you are one of many thousands of people in the same boat can be liberating.
2. Don't take this the wrong way - but it can be good to know that there are people worse off than you are - and there always is. Conversely, there will be people who are better off than you are.
3. Information. Yes - we can have too much when we are exhausted and our mental faculties have diminished. Try to limit yourself and just take in a little at a time.
If you are in the UK I recommend The ME Association. Their web site is informative and well set out. You can use it as a resource on its own or become a member. The site has highly readable sections describing ME, discussing treatments and so on. There are links to local support groups and and telephone support line. If you are housebound and isolated this can be a real lifeline. When you have the energy - take a look. If you want to join it is £18. This gives you access to further services. If you have been ill for some while this may be out of reach, but you can still use the web site as a resource.
Take care,
Saturday, 24 November 2007
Chronic Fatigue Syndrome/ME: Can you beat it?
Hi
I am a fellow sufferer and I know that this dreaded disease can be beaten!
I have been battling this illness for about 4 years now. It is hard to remember
because one of the worst aspects of this illness is the profound effect it has on your mind.
I really wanted to start this blog way back then so that I had a diary of it all.
Unfortunately, I just didn't have the energy or the capacity to focus my mind long enough to do it. However, I am very nearly better. I have a thing about not proclaiming 'wellness' because every time I do I get ill again. Something about not tempting fate or something.
What I can say categorically is that I am 1000% better than I was. I rarely sleep in the daytime now and the nights of disturbed sleep have diminished dramatically. It has been a long journey back to some level of 'health' and I want to share some of the things that I have learnt in the hope that someone, somewhere may benefit in some small way. I also need to make some money so please click on the Google ads!
So - enough rambling. Back to the title of the blog - CFS/ME: Can you beat it? The answer is yes, you can. Life will never be the same again and you wont ever be the person you were before getting ill. This isn't necessary a bad thing - that person got ill! You don't want to go backwards - only forwards.
So - where to start? If you are reading this, then I have to assume that you are either uwell or know someone close to you with this illness. If you come into the second category then I must congratulate you. People dealing with this illness in someone close to them need a support group! Something like they do for the families of alcoholics. People who are ill just don't have the energy or mental capacity to keep explaining how they are feeling - that is exhausting in itself. It is up to the people in the support network to do their own research - so well done to you!
If you come into the first category then you are probably already losing concentration and ready to click off the page - but wait! Before you leave my first tip to you is that you must learn acceptance. Any profound or chronic illness is similar to bereavement and you need to go through the phases of grief - grief for your previous life and your previous self. Until you do this you really cannot get better. I will come back here and go through the phases with you.
That is enough for today. Allow yourself to be sad that your old life is gone. Reminisce with fondness about the good bits and be glad that you are saying goodbye to the bad bits. Allow yourself to be sad. It's OK to be sad. Get it out of your system and move on.
Remember - look after yourself.
Subscribe to:
Comments (Atom)
