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As I write, six weeks before Christmas, I have been running a
temperature for more than two weeks, am in bed or up, not washed or
dressed, only for essentials; the curtains are drawn against daylight; I
feel sickly and nauseous; I cannot concentrate for any time, nor hold my
head up to make conversation. My caring, supportive, doctor has nothing
to offer but genuine sympathy and advice of taking paracetamol, water
and rest. For those who say, when they see a person who suffers from
M.E. (Myalgic Encephalomyelitis) in the street, "You always seem all
right when I see you," this is what we are like, when unable to go out
and when you don't see us. I haven't been across the doors for 25
consecutive days this month for anyone to see.
Christmas, love it or hate it, is coming. It is a demanding time for
those with an abundance of health and wealth. It is a testing time for
all individuals and relationships, which is exacerbated to intolerable
when one is constantly ill. My experience, over 23 years, is quite
typical of hundreds of thousands in the UK, millions around the world.
There are tens of thousands, even more severely affected, who spend 365
days a year in an 8' x 10' space, bed bound, unable to speak, tube-fed,
blindfold, fans running, all possessions contained floor to ceiling, who
go nowhere unless on a stretcher. The majority are not entitled to care,
fuel allowance, or free prescriptions, as most people incorrectly assume
and, therefore, are left alone, unable to answer a door, raise a call
for help and, mostly, go without.
This appeal for understanding is not intended for those affected by
M.E., who are able to enjoy Christmas, or are prepared to suffer the
consequences afterwards but for those who dread it. If you love or care
for someone with M.E., think about it, put yourself in their position:
Would you welcome guests, in a party mood, if you were feeling as I have
described; wish them to enter your cold, house, neglected due to
inability; receive cards and gifts you have not the energy to return and
cannot afford without going further into debt? Would you want to receive
an invitation to a party of strangers, dependent on someone for
transport home; swap your own bed for a lilo on the floor of a spare
room, next to a loud gathering you cannot join?
Here is some advice, (1) for anyone who loves or cares for someone with
ME: ask them what would be best for them and then, unconditionally,
unquestioningly, do as they request; (2) for any M.E. sufferer, unable
to cope with Christmas: tell your relatives and friends the contents of,
or show them, this letter; (3) for any M.E. sufferer unable to deal
with, even bullied, by someone who doesn't understand: Contact us and we
will speak to them on your behalf.
We shall hear of more casualties in the New Year, from those who did not
heed this appeal and who will not be there 24 or 48 hours later to
witness the exhaustion, or the months of M.E. relapse, that ensue. I
don't know a single person affected by this awful illness who has not
additionally been touched by social isolation, fragmented relationships,
a broken heart or spirit and even death. Please take these tips for a
happier Christmas for all.
Dr John H Greensmith
ME Community Trust. org
I am sending this letter for publication to my local newspaper and some
other selected places.
If you would like it to appear in your local area newspaper, wherever
you live in the world, send an e-mail
to drjohngreensmith@mecommunitytrust. org with "My local newspaper" in
the subject line. If you don't know,
or can't find out the e-mail address for us to send it to (usually
something like letters(at), or editor (at), or firstname.secondname (at)
nameof newspaper.com), leave the message area blank and we'll reply with
the instructions how best to find it. It would be great if as many
people as can manage also write, separately, and/or in response to the
Christmas theme. You may also forward and re-post it wherever you
choose, such as online groups, forums, Facebook, Twitter and use in
newsletters for maximum impact of message.