I was at Charing Cross today. I always feel emotional there. It was this time six years ago that I’d spent a fortnight on the ENT ward. I’d been transferred from Hillingdon Hospital or in my experience HELLingdon for my first ACDF which was postponed due to my facial infection. I was so well looked after there. Yet once I step over their threshold I feel anxious. Even today when I’d already knew I didn’t require surgical intervention. That although I had some minor degenerative changes in my thoracic and lumber areas I had no cord compression. This is very good news, a few dehydrated discs here and there is plain sailing. I can get back to swalking and writing and persue publishing. My battle now is with pain.
One minute I’m typing away and the next a wave of pain strikes and I want to throw up. Doctors ask is it sharp? Is it tingling? Actually this pain is blunt and it feels deep rooted like a tumour and it’s in my head and the groves in my shoulders and it feels like veins in my neck are twisting. It’s also bloody boring and it makes me sad. It’s fine. My emotional cave ins don’t last long. Paddy and Kitty will bounce onto the sofa beside me and they’ll come up with a funny tale or two. I love having my children close. Young people have this electricity charging through them that’s contagious. I think it’s what keeps me so positive…usually.
For a while I wondered would there be new experiences on my horizon, would I meet new people? It’s not me being dramatic; I’ve only been out of my local area four times in a year: twice to the theatre and twice to Charing Cross Hospital. My writing led me to an agent, which led me to editing meetings in new cafes and bars and maybe in the future it will lead me to a publisher. It is of course a poisoned chalice because over the last year I have deteriorated in terms of pain and I have to consider that my manuscript is possibly the reason. Oxycotin’s been added to my perscription and I keep randomly falling asleep. I think I’m in bed more than I’m awake. I can’t bend; not to the fridge, the cooker, to pet the dogs. I’m also very confused.
Everyone with CSM will be familiar with chronic pain and a constantly altering physical state. Myelopathy is like someone having your effigy and each day they stick a pin in a different part or they stick two pins, three pins, four pins.
Myelopathy steals your life. It prevents people from working. From operating independently. From participating in their hobbies and family life. It’s like being an extra on a film set.
Every day before work I swam thirty lengths. I spent the day in front of students lecturing. I drove to soft play rooms and kids parties. Every occassion I danced. Every snowfall I built snowmen. I remember starting a snowball off with my kids outside their school and rolling it all the way home whilst it grew larger and larger. All the time I baked, and power walked, and gardened and springcleaned and decorated all to the soundtrack of Kiss FM. Now I’m an observor.
I think what I feel is loss. Of course I’m glad to be alive, not to be in a wheelchair, not to be battling cancer, not to be in Syria. The list of those worse off than me goes on forever. Most of the time thinking of them stops me from selfishly thinking about me but today, back in Charing Cross, I remember that I’m left with a version of myself that’s no longer useful. I know that problems will arise and I’ll be downgraded again.
There’s that saying I wouldn’t wish it on my enemy – actually I think it would be brilliant. For them to wake up one morning bright and breezy until they attempt to get out of bed. To not be able to move. To have to focus all energy on swinging their legs out of bed, to try to sit up, breathing hard because of the energy used. To feel exhausted and defeated and that’s before they’ve put a foot on the floor.
I think what’s difficult is that I am disabled but not conventionally. Today I may have walked the length of the garden. Tomorrow I may not make it to the back door. But if I’m out I’m probably casually dressed, definitely smiling because I love going for coffee and this will be me at my best otherwise I wouldn’t be out.
I’m like an Olympic athlete – my walking depends on the environment and conditions. How long I’ve been seated for. Whether I’ve travelled in a car. How dizzy I feel. The surface I’m walking on.
The next day I’ll be in pain. I’ll be tired. My body will be so stiff and heavy it’s like semi paralysis. I’ll lay in bed unable to lift my head from the pillow and I’ll vow never to leave the house again but it’s like childbirth…a week later I’ve forgotten all that and off for coffee I go again.
I don’t know how my words or tone read. I don’t want to be a moaner but then again I don’t want to pretend like everything is cushty because for all those out there with myelopathy I won’t diminish the challenges they face along with their family. For a long time I felt very isolated. I didn’t understand my disease so I couldn’t explain it. I searched the internet for hours, every day at the beginning, trying to find information and others with myelopathy. When I stumbled across https://www.facebook.com/myelopathy and http://www.myelopathy.org/ it was brilliant. I had a place to check in each day, read about others’ operations, outcomes, difficulties, chat. Through them I found other facebook sites Spondylosis Support Site and Anterior cervical discectomy and fusion(ACDF). I’ve learnt masses about my disease. It helps me to understand my mri, to have more informed discussions with my surgeon and doctor and I get strength from others because they’re feeling it too.
One of the reasons I write this blog is because it might find its way to someone who is totally floored by what is happening to them and who desperately needs a support group. I also write because it’s my new thing. It’s what fills my time. It’s what keeps pain in the background. If the old you was a sailor, windsurfer, gymer, rider, white water rafter there will be something new, a challenge, on the horizon.
Writing is my dream. It makes me the upgrade.