Tuesday, 4 September 2012

Tuesdays meeting was very informative for most people who attended. Everyone enjoyed listening to Dr. Patterson and we hope to get him back again to speak at Newry and Mourne. He explained that its important for the doctor to listen to the patient as doctors are still learning how best to treat Fibromyalgia too, and everyone needs an individual treatment plan. Dr. Patterson  stated the importance of using a number of things to treat fibromyalgia not just medicine, such as a nutritional diet topped up with supplements, and perhaps acupuncture,relaxation techniques,graded exercise. He also listed the main symptoms of fibromyalgia as being pain,fatigue and poor sleep and suggested if sleep was improved all other symptoms would lessen also.

Newry and mourne support group are having a charity fund raiser on Saturday 15th September. The parachute jump is to raise funds for M.E research and is the big event this year we would love as many members as possible to attend, so we can take photos to publicise our group and the work we do.

At the next meeting Tuesday 2nd October we will be having our annual general meeting.

Saturday, 18 August 2012

New service available to members.

We delighted to inform members that a new FREE service will be available from 4th September 2012.

A mature student is now offering a counselling service to those members who feel they need help in dealing with all aspects of living with ME/FMS.

At present I am helping this gentleman understand the background and present situation concerning the disbelief and neglect we are forced to endure from some NHS professionals, the lack of specialist NHS services and the misperception amongst the general public that these illnesses are just about being 'tired or a bit sore!!'

There are many issues surrounding living with a chronic illness, loss of career, loss of earned income, family relationships, lack of understanding, loss of confidence and learning to accept a new and purposeful way of living.

This service will provide a safe and secure place where patients can talk over their fears and concerns in total confidence with a counsellor who will fully understand the special issues and difficulties we face living with M.E./CFS/Fibromyalgia in Northern Ireland.

Working as one

Monday, 13 August 2012

For all you people who want to learn

My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i dont want to
It`s because i dont know where my pain will be i.e;Today it is in
my shoulder, but tomorrow it may be in my legs or even in my arms/hands.
Sometimes i feel as if it`s my whole body.
My pain is believed to be caused by improper signals sent to the brain,
possibly due to sleep disorders. It is not well understood, but it is real.
My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally,
it isn't because I don't want to. I am, most likely, paying the price for stressing
my muscles beyond their capability.
My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.
My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
curtains or listen to your child scream. I really can't stand it.
this gets very frustrating, noises that have never bothered me before
do now.
My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.
My depression - Yes, there are days when I would rather stay in bed
or in the house or even want to die.pain can cause depression.
Your sincere concern and understanding can pull me back from the brink,
yet snide remarks can tip me over the edge.
I will improve, i dont know when, it might be something little that
will bring me out of it. Its not your fault and its not mine.
My sleepless nights - Don't be put of by the looks of me in the morning, i might look
like a zombie, this is because i have not had much sleep, my brain wont
switch off, i have 100 and 1 things going around and around in my head,
none of it makes since, i used to sleep 8 hours a night, now i am lucky if
i sleep for 2 hours at a time.
Sleepy days- Some days i feel so tired, my body weights a ton, my whole
body aches, i have no energy, even though i have been in bed all night i
am going to have to go back to bed again, please understand how i feel,
i don't want to live my life in bed, it is not my choice, the choice has been
taken away from me.
My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
My hands go numb and i drop things, i don't seem to know how to control my
own body, this is not a good feeling.
My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appetite is broken, and nobody can tell
me how to fix it, if only there could be that magic pill. I dont like my body
like this and i cant help the fact that i crave food all the time, i try my best
but my best is not always good enough.
My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks. In fact, the good
days are what keep me going.I try to do what i can as i never know when
the next flare will return.
My medication- I have had to try many different medications, i seem to be
very sensitive, not sure why. Please bare with me if i seem ratty the meds
cause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains.
Some meds can take up to 4 weeks to kick in but it only takes a few days
for the side effects to kick in.
Cravings- Please dont think i am being greedy, its not my fault its the side
effects of my meds. I try to resist but sometimes it gives me pleasure to
eat that chocolate bar in the fridge, i try to have more control over the
cravings and to eat healthy snacks but you always see me with the chocolate
Even those who suffer from FMS are not alike.
I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else, we all
have different pain levels. A lot of the same symptoms yes
but also some different.

I hope this helps the non believer`s to understand just a little of what we
Go through on a day to day basis

Sunday, 12 August 2012

Saturday, 11 August 2012

Educating Ulster Doctors About ME & FM.

We are now planning a conference to educate GPs, Practice Nurses, Physiotherapists and others about ME & FM.

Newry & Mourne ME/FM have obtained conference funding (a) from Newry & Mourne Council, an
d (b) from proceeds of 'The Feila Joe Fundraiser' at O'Tools Bar/Restaurant Sunday 26th August 2012.

This event will be a combined project with N&M ME/FM, MEANI and MESNI due to the enormous workload involved. Hopefully this will be a successful and productive evening of benefit towards raising awareness and understanding within all sections of the NHS in N.I.

Dates, speakers and programme to follow