My Thoughts About ME

Hello Everybody

I have read other comments & hope that my thoughts may help some
others who have ME, having had ME for about 17 years & actually improved over the
years, but not fully recovered

Firstly try to find a sympathetic GP who has some interest & or
insight into ME, I have learnt along with my GP, remember you can change GPs.

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

Explore if you have other co-existing conditions that are treatable,
I discovered as others have that 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, the new answer is
technology & voice recognition. What a relief it was to find there
were other answers, to the pain & distress I was experianceing.

Therefore this takes away some of the stress & pain that I related
inappropriately to ME

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 depression

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 had visitors & that sometimes I cannot come out
to play however much I want to.

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 of help such as

Register with social services as disabled

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

Claim Disability Living Allowance, 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

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 social services 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 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.

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
felt they could ring me for any reason 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 so we still have things to offer to our
friends family work & society, although we have to sometimes pick
when & where.

If you are newly diagnosed or suspect you may have ME, symptoms these may include flu like symptoms,(sore throat, fever, sickness, dizziness, exaustion, aches)any or all

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 peoples comments.