Being recently diagnosed with Fibromyalgia/CFS, I’ve spent
this morning (2nd May 2014) looking through various Fibro blogs and sites, in an attempt to
try and find the words to explain, well ... me.
Some things I’ve read and thought ‘yes, that’s it exactly’,
others I’m not so sure about. The big
message that’s come from them all though is that Fibro is one of those
conditions that hits every sufferer differently. Maybe that’s a big part of why it can be so
hard to get it diagnosed, or believed.
I’ll be honest, because of my long history of General Practitioners (GPs) not taking
my health issues seriously, I hadn’t wanted to
start looking like one of the internet self-diagnosers, so even though it had
been raised as a possibility, I didn’t, until after my diagnosis, look into
the details of Fibro.
Now that I've read the symptoms lists on more than one site
(cause each is slightly different), I realise that I’ve actually had FMS/CFS,
or symptoms thereof, in some form since I was about 14. I’m now 39 by the way.
In my teens, my lethargy, weakness, dizzy spells and muscle/joint
pain were put down to growing pains, exam stress, puberty, weight.
In my early 20s, when I was missing so much work my
employers actually asked me if I truly wanted a job, and my direct supervisor
said she didn’t believe I was ill (and promptly took 6 months off with stress,
which she’d also said didn’t exist) I was given the same excuses. At this point I did at least get referred to
a balance clinic, for what was at that point the most minor of my issues … they
agreed my balance was shot, but that was as far as it went – no joined up
diagnosing there.
In my late 20s and early 30s, it was pregnancy, post
pregnancy, stress of having kids, stress of being a carer … ‘what do you expect
– you’re overweight/reaching middle age/have had 1/2/3 10+lb babies – your body
will ache now and then’
At this point, I pretty much gave up with the medical
community. It hadn’t really been a
sustained attempt to be heard in the first place, just a cry for help when I
was in a bad place, that was rarely if ever heard. So often, when I was at my most ill, I was
unable to get to the doctor, so they often saw me at my best instead, as is so
often the case for those of us with fluctuating conditions, and so they assumed I
wasn’t ‘that bad’.
Then, just under 3 years ago now, after over 20 years (the
latter ten of which I was also sole carer for another disabled adult) of having
periodic flares ups that wiped me out, interspersed with longer periods of
being able to maintain a reasonable quality of life and levels of activity, my
body finally gave up.
Would you believe, it was an attempt to get fit, by joining
a gym under a doctors referral, that finally did for me. In less than 2 months of weekly gym sessions
(and I couldn’t physically do more than an hour a week), I was housebound, in
constant pain, unable to do even the basics needed to look after myself, let
alone my kids.
After a few months, once I realised this time it wasn’t
going away, I went back to the doctors, and saw one I hadn’t met before. She was sympathetic, seemed to understand/believe
my problems, even suggested several possibilities to check for, including, CFS/Fibro. In the very next breath though, she stated cheerfully
that she’d NEVER diagnosed anyone with either condition, because they were so
vague and unprovable (clearly implying that she didn’t believe in them). Seeing as I was more concerned about it
possibly being MS (as my symptoms were very closely mirroring those my mother
suffered just before she got that diagnosis some 20 years earlier), and not
knowing much about FMS/CFS, I didn’t think much of that comment at the time.
Over the following year she ran blood test after blood test,
each taking between 2 and 4 weeks before I could see her to get the results and
move on. They all came back clear except
for a mild vitamin D deficiency. So, she
diagnosed me with depression and told me to buy some vitamins and get some sun. She did book me in for a block of CBT, but I
missed so much because of my health, I was kicked off the list. Such are the joys of the NHS ... good as it is in many cases, in others it just doesn't work.
I gave up again. The emotional
stress and physical pain of getting to the surgery, only to come away no
further on than before, was just too much.
Then, another 6 months down the line, I had to see her for a
routine check-up. By this point, I was
walking with a stick, and extremely slowly at that. Little old ladies with zimmer frames were whizzing past me as if I were stood still. I envied them.
It took me so long to walk the 10 or so yards
from the waiting room to her surgery that she came out into the corridor to
find me. I think this was when she
finally realised it wasn’t all just a few aches and a ‘low mood’ (she’d stopped
calling it depression early on). She
insisted on running all the tests again, ‘in case something’s changed’, but
when they all came back the same, I finally got a referral, and some pain
relief.
It was a rheumatologist she referred me to, despite her apparent
non-belief in chronic fatigue ailments, and my bloods showing no rheumatic
issues. This surprised me, but it did me
a favour too. The consultant, purely on
reading her referral notes and spending a few minutes talking to me, instantly said
Fibro/CFS.
To be honest, I didn’t care what my diagnosis was. I didn’t
even care that it’s not curable. This
was the first time in almost a quarter of a century that I’d felt any medical
professional was truly taking me seriously, rather than just paying lip
service. That they were looking at me as
a whole, rather than just the simplest symptom.
I was just grateful to finally be believed … and to finally have a name
to give all those people who ask ‘what’s wrong?’
Oh, and if we take this as a definitive list, which I doubt
it is, there are only about 20 out of the (currently) 251 symptoms that I haven’t suffered with.
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