We are entering into September and this has always been a
time of organising, sorting out and re-starting for me; even more so than
spring or the New Year. I think years of school terms and being something of a
perpetual student has meant that September is time to start work, buy the new
school shoes (the best bit) and a new school bag. I get a feeling of cooler
days, fresh starts and thinking about what I’m going to do next. This year, my
new start has been slightly scuppered by being in hospital. It couldn’t have
been worse timing for me. There are probably reasons for the breakdown in my
health. I did have a wild summer with moving house, then 2 weeks later going to
New York, then a week at home, then a week in Northumberland. In retrospect it
was probably a challenge for anyone without adding a chronic illness into the
mix. I had in my defence expecting to move an awful lot earlier but I couldn’t
foresee that my buyer would be an inconsiderate arse.
Once the spectacular back pain wouldn’t stop and I ended up
in hospital I was fully expecting them to say a kidney infection because I had
suspected one for weeks. I was even expecting MS relapse until they found me
the neurologist from hell who decided that 18 years of diagnosis meant nothing
to him and had no bedside manner whatsoever. He made me feel like a liar and
never returned as promised to check how I was and bring his superior to give me
a neurological check. I ended up on a chest ward and when assessed by a medical
consultant he simply took the diagnosis as MS because someone once diagnosed it
– I didn’t pluck the idea out of thin air. Then he decided on an MRI of my
brain as already suggested, and my spine too. I expected to be told nothing really
– no MS changes and bit of wear and tear in the spine. My spine felt so bad
though and I couldn’t find a usual explanation.
When the diagnosis came I was shocked and surprised. Yes,
there were degenerative signs in my neck and my lumbar spine and I expected
that. However, there was more that I didn’t expect; my neck from C5-C7 had a
protrusion in the discs, pressing into the thecal sac and causing loss of
signal. This would probably need surgery the doctor told me. Then there was
something with a very long name that was basically a benign tumour in the
thoracic spine at T7. These can cause extreme pain and blockages in the spinal
canal causing problems with the flow of spinal fluid. Some require surgery and
some require radiotherapy to shrink them. This news hit me like a tonne of
bricks. I was so used to hearing the same old reasons that I never expected to
hear such a positive and potentially life changing diagnosis in the short term.
I did know what to say but I was very scared immediately. The word tumour is
always scary and I was very happy to hear it was immediately a benign form, but
I have so much I want to do and already battling so much I don’t know if I can
battle with any more. I have so much pain and potential relapse to deal with
every day. It requires some management and I don’t always get it right.
I have no idea how I’m going to deal with this news right
now. I am on daily diazepam and morphine on top of my ordinary drugs and cannot
drive. I can’t walk without crutches and feel sleepy a huge amount of the time.
I can manage pain free if I take my meds and lie around watching TV, reading
and sleeping but adding anything extra into the mix is risky. I am about to
start my second year of college, I am just starting my own counselling and
writing therapy business, and I was even looking forward to my next area of
study to enhance my writing skills. I feel like I can barely manage everyday
tasks like getting dressed and bathed without adding work, college and dealing
with ATOS who have decided I need a medical because they feel I might be fit to
work. I can only deal one day at a time. I have to deal with that day and then
wake up for the next one and start afresh. I am forgetting to pay bills and
feed the animals – till they object loudly!! I hope my brain becomes more able
to function gradually and I become more used to living with this level of
disability. I have started being able to talk about wheelchairs and why I might
have to use one for a while. Yet, I haven’t wanted to tell people because I feel
like this is just too much. I am untouchable, unlucky and a bloody jinx. Here I
come with my latest tidal wave of misery. So I am telling people in dribs and
drabs, when I feel able. I guess this is the bravest step, telling you all and
waiting for the fallout. Maybe one day I will get used to it myself.
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