A Beginners Guide To ME 21 January 2013

This was originally written back in 2006,but updated with the help of Caroline Higson recently

I have read other peoples comments elsewhere & hope that my thoughts may help some who are new to the condition, having had ME for about 20 years & actually finding I have improved over the years, but am not fully recovered. I hope the information listed may help others along this difficult path.

Firstly try to find a sympathetic GP who has some interest & or insight into ME, I have learnt along with my GP over the years things that can be useful for me, the largest is that she is willing to listen and not write me off, remember you can change GPs if they are not helping, also it is possible to complain about poor service from them.

Accept that your life is going to change, often drastically, but that
ME will not kill you in itself.

Explore if you have other co-existing conditions that are treatable, I discovered as others have, that there are other health issues that could affect how ill we are and the pain and distress we deal with. I have arthritis of the neck & spine as well as RSI in my right hand & arm. Certain exercise & massage help to relieve the pain to do with the arthritis; the RSI I feel is made worse by using the computer so much. So please do think about the time you spend sat at a computer.

The new answer is technology & voice recognition. What a relief it was to find there
were other answers. Therefore this takes away some of the stress & pain that I related
inappropriately to ME, I struggle with remembering the more complex things it can do, but once set up it makes the task of writing so much easier. I use Dragon Naturally Speaking

Try to find some way to develop a more positive attitude, mine was to laugh at myself & the stupid things that I did & do even now, rather than withdraw even more, leading into greater unhappiness. Never forget that you are still a part of society and you still have a whole range of knowledge skill and experience to offer.

Be open with people about the condition & the effects it has on me, such as the fact that I need frequent breaks to rest & sleep even in my own home when we have visitors & that sometimes I cannot come out to play however much I want to. But also to allow me to decide as and when I want to test or ignore the boundaries.

To try to accept I cannot live life in the way I once did, setting myself impossible targets that others would never of expected in the first place of me.

To accept I have a disability, but then to obtain help to cope from all sorts of sources such as

Obtain a Blue Badge

Apply for a concessionary bus pass or taxi vouchers

Explore Shopmobility schemes

If employed apply to Access to Work for assistance as soon as possible, either directly or through your employer, even if self employed help is available

Claim PIP, Attendance Allowance & any other
benefits, but ideally let a professional assist with the filling in
of the form & the gathering of information to support the claim, but look at the Benefits and Work Guides

Ask for a Community Care assessment from social services, because you
are disabled & a Carers assessment for anyone who provides care to
you ( don't tell them initially what help you need that's their job &
you are entitled to the assessment by law).

Ask for an assessment by an occupational therapist or contact
Disabled Living Service in Manchester or the local branch where you live,to see what help is available in practical terms, such as bottle openers, chairs, bath aids ( don't
go out & spend lots of money when you may be entitled to these free
of charge)

Check out with others what sorts of treatments seem to work, beware
of expensive ones that nobody seems to improve from, or nobody else
has heard of. Personally I have been receiving treatment from Dr Raymond Perrin and Gail Sumner for some years and it has worked for me, but thats only my experiance

The biggy is try to PACE yourself & set realistic limits on what you
can do, yes you will have good days & sometimes get away with over
exertion, but if you have a relapse through bloody mindedness how
does that help how you feel ( boy do I know this one)

I found that a support network of people who I could ring & chat to even if I could not get out helped with the isolation, but also who would ring me made me feel valued.

Remember that you are still a person in your own right & not a victim, & are entitled to opinions & views about your life & society as well as the things that are important to you, despite the fact sometimes stringing a couple of sentences together may be difficult to do

I was reminded the other week that most of us did have a career & life before ME and some still do so we still have things to offer to our friends family work & society, although we have to sometimes pick when & where.

Obviously these are only some of my thoughts & may not be appropriate for others or maybe will provoke discussion, but at the same time I hope may ring a bell & help some along the path of coping with ME.

Guess what my back is now aching so will close but be interested in people’s comments.