It
has yet again been such a long time since the last blog, which was an
introduction really to fibromyalgia and how I cope as a mummy with it. But
recently I have had the biggest flare up brought on by the ever so delightful
stress! Ta da. So lets play a game...never have I ever...felt so trapped.
(Contradiction alert) Never have I ever... Felt so detached from my own mind
and body. Never have I ever... Experienced physical and mental pain at its
highest. Well it looks like I'm downing all the shots. My last blog was such a
positive look at fibro and how I have coped since being diagnosed but yet this
year has brought about its problems with, as mentioned earlier, a trigger that
even I underestimated...stress. Its one of those things which I feel gets overlooked
wherever you might be experiencing it. For me, my work place was the
contributing factor with a job that seemed to be swallowing me up and spitting
me out and maybe I also underestimated the link between stress and fibro that I
had to get to a place of 'breakdown' before realising this is not ok.
But
at that time I was totally unsure of what it was I needed or wanted for that
matter. All I knew was that crying (and I'm talking pretty much every day for 5
weeks) was something I
My
head was a complete mess feeling like I had a ball of wool for a brain (see
illustration below although it might not look like a ball of wool for a brain, it is. Blame the
computer for breaking reducing me to pen and paper!) that had been played with
by a bunch of kittens and my body was screaming out in pain. You see
fibromyalgia does not come with the same set of symptoms, instead it is made up
of a bunch of different symptoms which is different for each case and different
every single day. Mine include all over body pain which is more localised
within the joints such as knees, hips (imagine these in a vice all day long
which is just being cranked tighter and tighter as the day goes on) back and shoulders
which are all the worst areas. Then there is jaw pain, which at its worst can
lock the jaw tight shut. A godsend for the hubby I’m sure. Fatigue can creep up
unexpectedly not only making me want to sleep but at times making moving
impossible then there is the IBS, headaches and restless leg syndrome which
actually can be great when that certain someone is pushing you too far and in
one sharp kick, ha oops sorry it’s the legs. This can also be useful in bed for
those evenings when you need the snoring to stop! Ha ha. Sneaky me.
The
physical pain can come between so many of my mummy duties including taking the
ninja to school, housework and tidying and even weekend activities which is the
most painful on a mental level. Ah yes the mental level. The ever so
stigmatized mental health part of fibromyalgia with its even less understanding
than the physical part. Short-term memory loss, verbal confusion, concentration
and forgetting simple instructions are all things I deal with on a daily basis
and in a demanding job this can prove tricky and upsetting especially when you
get the old ‘you must have forgot’ line. Way to kick me WHEN I’M DOWN!!!
(insert cross emoji here). Its funny when trying to describe this to others as
they either give you the look of eh? Total confusion, the sympathetic head tilt
but really thinking that explains a lot or the moving on in conversation in
disbelief. A brushing off if you will. But awareness of these symptoms are just
as important as the physical and play a huge part figuring out strategies to
managing the illness. Last but not least anxiety and depression are both
symptoms of fibro, which have both been wreaking havoc within my being recently
all linked to the stress factor. And very much like fibro these come under that
same ‘invisible illness’ umbrella because if it can’t be seen you must be ‘fine’
right?. Grrrrrrrr!!!!!!
In
coping and managing with the physical and mental pain I put in place methods to
help with this such as making lists, use of a diary (that a 3 year old
scribbler would be extremely jealous of) yoga, Pilates, physiotherapy, healthy
(ish) diet, painkillers when needed, new meds (which make me feel horrendously
sick and dizzy but this will pass) and I’m learning how to overcome the boom
and bust scenario. Basically not overdoing things so that you wipe yourself out
completely and just planning around events can help with this. Christine
Miserandino’s Spoon Theory is a fantastic way to explain this (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).
I
can honestly say that having a high pain threshold does me well and maybe the
years of dance as helped shape and mould my body to cope better on a daily
basis as its not horrendous every day. But there is pain 24 hours a day 365
days a year so when I’m asked ‘how are you’, my answer is no longer ‘I’m fine’
I’m never fine, I’m in constant pain but I cope but being open about it not
only spreads awareness it also shows by the expression on
When your mind and body are out of sync
it can be so difficult to get the balance back especially if the place you have
reached is of the dark kind. Without going too deep I can honestly say my
darkness hit hard recently and struggling with anxiety and depression alone can
be a very scary experience but when you team it with a chronic illness like
fibromyalgia you become trapped in an anxiety pain cycle. Anxiety triggered by
stress which releases cortisol which triggers pain, which triggers more
anxiety, and stress equalling being trapped in a tiny room with the walls
closing in very quickly. Once I was able I started talking to people around me
and opening up about what I was going through it became so much easier to
process. It was especially difficult in the first stages thinking I wasn't
worthy enough of being a mummy, as I just couldn’t control my tears and some of
my actions. Something took over me and I became a shadow but like peter pan my
shadow clung to my shell hanging on the hope.
The
hardest thing to deal with in the whole experience was knowing the ninja was
witness to it all. I do think it’s important to be honest with your kids but
should they really have to go through your pain? Its difficult enough having to
deal with your child helping you out of bed on those bad mornings and I remember explaining
this to a friend once and the ninja buts in 'but I want to help look after you'
and I just melt thinking this little human is amazing. She’s receptive of
everything that goes on at just 9 years old totally gets it. She gives me a
break from her 9 year old attitude when I'm at my worst and over the past 2
Months, I have been. She has seen and been through so much with me and is
always willing to ask questions yet
gives
me space, something, which has been so important of recent. Space and time
never again to be underestimated. Spending time away from the workplace is
giving me time to re energise both mind and body. It goes through so much and I
never take it for granted as it has served me well but I do forget to put
myself first neglecting the most important things that actually keep me
functioning on a daily basis. Time is like mummy’s magic cream from the days
when you’d graze your knees as a kid, as soon as you have it, it calms you
down, it makes you regain hope and you start to see the positives again. It is
taking time to heal but I am now believing ever so slightly, in myself again,
regaining small amounts of confidence which I know will grow, being a mummy
again and doing the mummy jobs like helping out with homework and wanting to
listen to guitar practice. My family support means the absolute world to me and
this is what has helped so much. We are a family of three and as the ninja
states, ‘three makes a triangle and a triangle is the strongest shape.’
Thank
you for reading
Big
hugs. xxxxxx
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