Support

If you have cervical myelopathy, or think you have it, check this site out http://myelopathy.support/myelopathy.html   I’ve had csm for five years but only recently found this site.  I’ve been stumbling around (metaphorically and physically) trying to figure things out myself.  This site is brilliant, there’s definitions of terms, visual explanations, personal stories, medical breakthroughs and investigations.  So check it out because it’s helped me immesely.  I’m still a follower.  It’s also helpful for family and friends to visit the site too because myelopathy effects the whole family, my husband is now my full-time carer.  Like mental illness, myelopathy isn’t always physically obvious so those around you may not be sympathetic particularly if you are middleaged.  Myelopathy is a natural degenerative disease, not uncommon in senior citizens, where it’s progression is usually slow.  Health professionals are not always trained to care for younger sufferers.  Myelopathy is not a one size fits all disease.  It’s complicated.  Each person’s body is unique, how we sustained myelopathy will be different, the damage to our spines will differ, nerves damage from surgury won’t be the same.  I could go on because I’m a bit boring like that but you’ll get the picture from the website’s post.

Now back to a bit of what this site is about.  I love a disaster movie, particularly alligators, conger eels, sharks.  I saw and heard of something horrible yesterday.  It was the most cruellest, freakish thing to do, I nearly cried – shark finning.  My advice is never click on a related link.  It will suck your breath out of your body it’s that horrendous.

rag and bone man human  my song of the week.  Remember we are only human so don’t be too hard on yourself (unless you have done something really bad)

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sofamum
Sofa Mum

Something  brilliant happened yesterday.   As usual I was tuned  into Kiss.  I had a little sway whilst listening to Drake; singing along to Too Good whilst looking at my husband who was giving me evils back.  Every so often when my husband wasn’t looking I’d hold onto the kitchen sink and move a few steps.  When I heard Major Laser’s Lean On  I pressed KISS’s number.  It rang…it wasn’t engaged…so I was already feeling edge of my seat excitement. KISS answered.  Just like that.  No warning. No time to prepare a laid back, yeah man thank you.  So far, so cool…then I opened my mouth.  I find it so hard not to be gushingly thankful when random happy things happen.  Immediately the onset of ‘thank you’ diarrhoea struck.  I think I told KISS how much I love them…but I’m not ashamed of my declaration, it’s true.  I mentioned my pink sofa which brings comfort and colour to my life.  I said I was disabled; it’s not something I say easily or often.  I think I wanted Kiss to understand how instrumental they are in keeping me sane.  Lovely KISS offered to arrange wheelchair access for me at the venue.  But although Sean Paul and Sia keep telling me to ‘hit the dancefloor’ I can’t. Well I could but it would be literal, ugly and I might take down a few innocent bystanders. I definitely mentioned my Kissmass failure.  Come on Kiss…I’ve spent the last four Decembers scared to leave the house or was it that I couldn’t leave the house?  You’re probably thinking what has this got to do with MYELOPATHY?  Everything!

Following my first anterior cervical dissection and fusion I had a six week check up. At this point I didn’t really understand what was wrong with me, not because I’m a plum but because each healthcare professional had their own interpretation of myelopathy, they used different terminology and their advice was contadictory.  Anyway at the check up I asked the neurosurgeon when could I swim…the physio said it was fine.  Apparently  NO…my spine would not be aligned, infact for most of it my neck would be at about eighty degrees.  Pain would ensue and it would lead to premature wear and tear.  Could I dance?  There must have been desparation in my voice because he asked if my career involved dancing.  NO…do I look like a lap dancer?  But I danced everyday, all around the house, whilst doing all sorts of chores.  Did I want to increase wear and tear?  Did I want to fall over? Did I want to be in pain. NO. No to swimming, no to dancing, no to driving.  It should be called NOelopathy.

I’m tuneless, I can’t play an instrument but I live and breathe music.  Maroon5 calmed me when my noisey hospital ward was like Hammersmith Tube Station.  They  helped me block out my ailing neighbours and their thoughtless visitors.  Yes it’s entertaining to evesdrop sometimes but when your head is imploding music blocks out the pressure.  It’s a painkiller, it’s soundproffing.  Plan B rescued me many times from the edge.

Music is therapeutic.  It coaxes out a shimmy here and a wiggle there.  OK then I’m falling over…Music can be dangerous to us myelopiters.

For me each day is the same but different.  Like yeterday morning: I got out of bed as usual, made porridge, checked emails to see if I’d won the Euro millions.   Nope.  Then I win these crazy tickets.   Suddenly the outside world was inside and I had something to say, which is bloody exciting when you are in the house as much as me.  Communicating can be a real issue with us myelopiters.  It’s lonely living in our bodies.  The external world doesn’t understand what’s going on with us.  We don’t know what’s going on with us! Sometimes I’m quiet not because I’m tired or moody I just haven’t anything to say.  I talk about the dogs, what the kids are up to, programmes on the telly so winning these tickets was breaking news in my house.

So my girls are definitely up for this Halloween house party. They promise to say high to Tiny Tempa for me. They’re going to bring a mate each.  My boys are a bit put out but we are not the Brady Bunch. Now there’s the costumes to consider.  I’ve got green tights upstairs.  Face paint will be inolved…it will rub off onto the pillows. Caitlan’s friend will sleep over…see already my mind is busy   In my imagination, right this minute, I can seee my daughters dancing, laughing, forming great memories together. The following morning Grace will be groggy and dangerous as she gets ready for work.  Kitty will be enjoying her half term sleep in.  The boys will still be complaining about the tickets.

OK, I’m not actually going to the party, I am on the peripheral.  Side effect of myelopathy number 1 – PERIPHERAL.  Get used to it…for those with cervical myelopathy a mind over matter thought process is dangerous…paralysis is very real.  Myelopathy is like having a baby, your world will change and you might find you’re backstage, on the bench, in the wings, put out to pasture. Did I mention no wine? That’s a bummer that one.  By all means give it a go.  I did. It was bad.  I don’t mean good bad.  It was simply bad bad.

So today has been very different. I’ve been different.  Kiss entered my airspace, I now have a voice of my own.  I have a tale to tell and it feels good. I’m real and not a cardboard cut out that gathers dust in the corner.  Also I’ve learnt something…I need to enter a lot more competitions – watch this space.

On a serious note, this blog is not fact it’s perspectve, each myelopathy case is unique.   We may have triggered our disease differently.  For some of us an injury might have brought it on. I unknowingly was  born with congenital fusing.  There is a brilliant site that brings those with cervical myelopathy together.  This is the link

https://www.facebook.com/groups/cervicalstenosiswithmyelopathy/

Another link is https://gertrudetkitty.wordpress.com/ which is where I blog about my writing, there is often a cross over with myelopathy.  My twittering can be found @GertrudeTKitty