I am 46 years old now and have been suffering
from a musculoskeletal condition since my early teens, although back
then this wasn't known. I spent the majority of my youth on crutches or
in a cast or dislocating something. So rather than being labelled with a
formal medical diagnosis I was given, what I now believe to be, a label
that carried a more psychological impact. I became known as clumsy and
was nicknamed calamity Jane. I grew up with little or no self-
confidence, always waiting to drop something, trip over, make myself
look like a fool. I became accustomed to being laughed at for being so
accident prone.
This continued throughout my teens,
affecting my confidence, my self-esteem. I hated myself and my
'stupidity', constantly seeing myself as a failure, giving up on things
before I'd even started them because I was bound to mess up.
I
had my first musculoskeletal operation when I was 15 years old. It
wasn't until I reached my early twenties that I started having serious
back problems. I saw several different specialists, had copious amounts
of tests and investigations until finally I was told, without any clear
diagnosis but, oddly enough a prognosis that suggested I would be in a
wheelchair by the time I was thirty! This news would
have been devastating to anyone but to a young twenty-something year old
about to begin my career path it felt like my life over. I fell to
pieces, unable to cope or to find solice in anything. All sorts of
emotions were racing through my mind- I felt cheated, sad and so very
angry. However I eventually pulled myself together and got back to
living and coping with my pain. It wasn't constant at this stage and
over time I noticed the pain beginning to settle. I was told by another
specialist at that time that some prolapsed discs had fused together,
hence the lack of pain. I felt blessed and extremely grateful and soon I
was back to normal, working, swimming, cycling, running - all without
any difficulty. My 30th birthday came and went and I carried on with my
life, without a wheelchair.
In
2009 I noticed things starting to flare up again. First with my jaw,
then my wrist. I was diagnosed with osteoarthritis and had a couple of
operations which rectified the problems and the pain which allowed me to
continue again as normal once I'd recovered. The fact I had been given a
diagnosis had a positive impact on my state of my mind and my attitude
to my condition.
However, the biggest blow of all came
a few years later when I noticed my pelvis appeared to be dislocating.
For years I attended numerous chiropractors and osteopaths, they would
pop the joint back in and I would carry on as normal. It became part of
my lifestyle, a dislocating pelvis, easily sorted by manipulation and
then back to normal again for me. Don't get me wrong here, it wasn't as
easily dealt with as it sounds. Silently I was aware that I couldn't
carry on like this forever and there was certainly no signs of it
rectifying itself, so I was inwardly battling with this whilst
externally trying to hold it all together in order to carry on being a
nurse by day and a mother, wife and housekeeper the rest of the time.
By 2013 my pelvis was dislocating daily and becoming very painful but
at this stage I had learned to pop it back myself so I kept on plodding
until one day at work it popped out and didn't pop back into place
again. The pain was unlike anything I had ever experienced before. I
don't remember much of it after that as I passed out and the rest was
rather vague. That experience was so frightening and was what made me
realise that I needed specialist orthopedic attention.
Moving
forward to present day, mainly because the 3 years that followed were a
đrug hazed period of my life where my condition deteriorated rapidly
whilst I had, yet again, copious tests and investigations. I spent my
days and nights drifting in and out of sleep due to the high levels of
prescribed medications which I had to take to try and find some form of
relief from the debilitating pain I was experiencing.
I guess
looking back I could say that the day I was finally given a diagnosis
was a day filed with a storm of emotions. It was a rough storm but like
any storm you know it will eventually pass. The storm was the diagnosis
that hit me like one massive wave after the other - severe
hypermobility syndrome, osteoarthritis, degenerative disc disease,
prolapsed discs, scoliosis, severe ligament damage leading to an
unstable pelvis and sacro-iliac joints. The mention of operations to my
spine and pelvis which could rectify some of this and relieve the
severe pain was the calm that could follow this storm.
My
whole life, my families life, my career, all had been ripped to shreds
over the years and although I knew that having these operations wasn't
miraculously going fix it over-night there was no doubt in my mind what
my decision had to be.
January 2016 -
the storm finally settled and the sea became calm again. It continued
so until April 2016, then the storm returned, only this time I was
prepared for it. I continue under specialist care, recent
investigations indicate further spinal deterioration. However, I now
know that pain is going to be part of my daily life. As with any storm,
some are worse than others, the difference now is that I am learning to
ride the waves. I go with the ebb and flow. Most of the time I see pain
as my companion, it can however be my demon also. Most of the time I
embrace it and work within the boundaries that my body allows. Some days
it overwhelms me but, as hard as I try, I can't find the strength,
desire nor inclination to cope. Those days are dark, filled with
profound sadness, loneliness and self -pity.
Always in my
mind I remain conscious that there are others worse off than me and I do
give gratitude, despite how low I feel, but it still doesn't stop me
from curling up on the sofa and feeling sorry for myself. I reckon we
are all allowed to have days like these.
Over
time you try anything to rid yourself of the demon that is pain. I have
reached a point now where I know that when I wake each morning and allow
myself to focus on the pain then it is almost like giving my mind
permission to allow the demon out. Instead I try my very best as soon as
I wake to acknowledge the feeling of pain but, as difficult as it is, I
try not to dwell on it. I get up, sort my children out for school and
when they have gone I focus on myself. I allow myself to sit for a few
minutes and feel my pain. I then set my limitations for the day knowing
the severity of that days pain.
It has been such an
emotional struggle, and still is, to come to terms with the fact that in
order to function to some capacity on a daily basis I have had to
re-think my life, to start to make changes that suit my 'new' needs. I
have had to change my dreams, reach for different goals and acknowledge
that it's ok to ask for help, but most important to recognise that I am
still me. I may be limited physically but I still have love in my
heart, a rhythm in my soul and an abundance of life energy to keep my
spirit strong, happy and ambitious to reach my new goals.
Deirdre.
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