Community Spirit ezine, July 2019

article is not about me feeling sorry for myself; it is about why I
This
to start a support group in Enfield, Middy, UK for people with
decided
felt that I was alone with my illness. I looked well but my body was
I
apart from within.
falling
I mentioned earlier, I worked at the Nightingale Cancer Support
As
in Enfield and I used to run drop-ins for people living with
Centre
a Prostate support group/Breast Cancer support group
Also
had many one-on-one conversations with people.
and
is what It
missing in Enfield a place of safety, secure and confidential where people living with
was
could come and share their thoughts, fears and tears and in exchange would feel
Fibromyalgia
by people walking along the same pathway as them.
supported
September 2014, we had our first meeting which over 50 people attended. Since then the
In
have gone down, but we still meet once or twice a month to support each other and
numbers
have a private support group on Facebook, which gives positive information and articles and
We
support each other through this page and a WhatsApp group.
we
was lucky I got referred to the Royal National Orthopedic Hospital (RNOH) in Stanmore and also
I
London Hospital of Integrated Medicine (LHIM). The RNOH put me on a three week inpatient
the
management course and it gave me the tools to manage my Fibromyalgia. The LHIM helped
pain
to come off the medication that I found worsened my condition.
me
have found that few people understand how totally destructive Fibromyalgia can be in a
I
life. Well, why should they, if they are not affected by it. This means sufferers can feel
person’s
the support group we know, we get it. We cry together, we hold each other and share our
With
inner thoughts of how Fibro has destroyed our lives but after discussing it we feel lighter for
most
conditions. Patients should be told to pace and that acupuncture/massage and a little
other
can help the condition. CBT/counselling therapy should be offered immediately because
exercise
is no cure but learning tools to help you survive is very important as suicide in Fibromyalgia
there
is high.
patients
Fibromyalgia.
Cancer.
I felt that I had experience to run a support group for people living with Fibromyalgia.
share ideas of what helps. What works for one person may not work for another.
Many times fibromyalgia sufferers have been told by friends/family/employers it is in
isolated.
minds, they are looking for things to be wrong with them and perhaps they need to see a
their
Psychiatrist.
the release.
a group we want doctors to be trained so on the first visit they can easily make a diagnosis.
As
symptoms are easy to recognize and if the GP is not sure they can run blood tests to rule out
The
These views are my own story and are written without prejudice.