BY Alison Murphy MY...Hell...opathy Laughing & living with Cervical Myelopathy
Yesterday, my husband dropped me off at the swimming baths. The large float around my waist and my cycling style of swimming does raise a smile or two. Some call me a ninja turtle, some the barnacle woman. Today my predicament was in the changing room. With my combination lock. I tried it, retried it, again and again to no avail. It wasn't the wrong combination; it's my date of birth but the lock is old and sometimes you have to press it together for it to open. I could see my issue was attracting the attention of others. So in my swimming costume, dripping, I went to reception. A female employee, with bolt cutters came to my rescue. She struggled a little until suddenly the lock exploded apart.I opened the locker. Opps. Someone else's clothes. I used the 'f' word; it was called for.The leisure centre girl was laughing. The audience of women changing was lapping it up. I said this has probably happened to other people. No, she said. What an idiot.
My locker was only three doors away and I didn't even think to try it. I was resolutely sure that the locker was mine. I felt so sorry for whoever's locker it was. They came to the leisure centre to work out and relax. I had to lock their locker with my lock. I left an apologetic note on their door telling them the combination was at reception. Then I went for a cappuccino. With myelopathy you have to let these things wash over you.
I've been a little Norman Bates lately; stable one day, struggling with my myelopathy persona the next but I'm quite proud of myself. I've reached out to people to try to reconnect and everyone's been so generous with their time and considerate of my condition. I've been going to events and sometimes only staying an hour; but enjoying that hour.I went to a lovely patisserie for coffee and cake this week but told Diane I could only stay an hour because I can't stand independently, or straighten, if I sit over the hour. Also I'm learning how to be a bit precious. My husband calls me the princess and the pea because everything has to be just so. If a chair is too soft my back spasms, if my shoe laces are too tight I can't put shoes on, if my teacup is too full I can't lift it, if there is spice in my food I get IBS. I went from being totally laid back, able to eat street food cooked by greasy haired, uncompliant to hygiene standards, cooks to being very needy. I don't beat myself up about it. I'm not elderly or frail or sick but titanium is holding my neck together and if I'm not careful my cervical spine might topple like Jenga bricks again. So, when I'm chatting I need my friend opposite me, not beside. I can get in a car, but I can't get out without help. I need to be front of the loo queue because I can't hold it. If we can't be fussy now, when can we?
When the kids were little I would make up silly songs randomly about their activities and personalities. I'd wake them up with a song, tuck them in with a song. For a couple of years myelopathy stole my voice. It truly is a challenging condition. I wake up and feel how I image the wolf did in Red Riding Hood when his stomach was filled with stone. My body is so uncomfortably heavy, my bones hurt, my head is constantly under a vice like pressure...and that's at the start of the day! Understanding cervical myelopathy has been an uphill struggle, health professionals are not up to speed with a condition whose numbers are constantly rising. When my daughter was little she was given many Barbies and the first thing she'd do is cut Barbie's hair off. Grace, I'd say, it won't grow back, once it's cut, it's cut and that's like the spinal cord, damage is unrepairable - for now anyway. It's through contact with fellow suffers at www.facebook.com/groups/myelopathy.support that has me bursting into song again. Knowing that I haven't got some one-off, obscure condition, that I'm not alone, is a huge deal.
My youngest daughter was eighteen yesterday. When I think of Caitlan it's like my heart bursts like a popping champagne bottle. She was ten when I was first admitted to hospital with what doctors thought was a stroke. We're throwing her a party. If I thought too much about the organisation I'd feel overwhelmed. I've called it a casual gathering, that way expectations aren't so high. I think if you have alcohol and food a party will run itself. My brother and his family are over from Kilkenny, Caitlan's godparents from Dublin, I can't wait. Having something to look forward to is paramount. I look forward to coffee with my husband, I love going to M&S Food Hall, I have book club, I love Grace coming home for the weekend. My four children are the painkiller that get my weak body out of bed. They are the smile on my face. They understand my condition better than neurologists, they live with my highs and lows and they pick me up.
I am happy. It's a glorious feeling. Once I get going I feel my life is full of possibility even though by four I will be totally slayed with pain and tiredness, my limbs will be unresponsive, and I will sway around the house, everything falling from my grip...I'll end up in bed for a few hours but at nine I will be enjoying Love Island with my family. If I think of 2018 so far I've been part of a training video to help doctors diagnose myelopathy earlier, I've been skyped (never skyped before) by Dr Nidhi who is gathering info to support early diagnosis. I've enjoyed two book club gatherings. Met Sharon for a pub lunch. Gone for innumerable coffees and cake and have the calories to prove it.
Caitlan recently returned from a geography trip to Iceland. Putting on her crampons, about to step foot on a glacier she thought of me. My mum will never do this, she'll never see this powerful landscape with winds that take your breath away. It's true. But it's ok. I've come a long way since my dramatic arrival at A&E. I'm walking. I'm sleeping. I'm managing my pain. I'm with my family. I think of my life like Bear Grylls' The Island. Myelopathy is my island. I'm not a giver upper and I've learnt to enjoy simple things.
Right now I'm sitting by the window, the sun is shining, a squirrel has just run the gauntlet across my garden fence while my two dogs are going bonkers. Spanish rap is playing. I'm glad to be alive; the alternative is an eternity I'd like to avoid. I've come to not expect too much of myself. Myelopathy is the long game.
You can check out Alison's blog My Hell opathy here
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