I’ve been adrift recently. Absent. Not myself at all. I’m in a relationship with a body that won’t compromise…it’s unreliable, unstable, unable to commit.
Of late my symptoms have been erratic. My pain isn’t unbearable, it’s just constant and it’s spiking irregularly. I don’t rush for painrelief. I give it an opportunity to pass but it doesn’t and ten hours later I give in because it’s totally drained me.
My day, every day, starts with pain. This isn’t a moan it’s just the way it is. Generally waking up is a positive thing; ask anyone who’s dead. It’s how my body feels when I wake. It’s not rested and floppy it’s tightly rigid and the actual bones hurt inside and between the joints. Every move is painful, it’s a deep hurting that can’t be rubbed better. I get up slowly, in stages; sitting on the edge of the bed thinking can I do this? Do I want to? I get up because I have two boys that I like to wave off at the door each morning. My youngest son is in his last year at school and I love ruffling his hair and calling him stringbean. My eldest son is always awake and showered before I stir; it’s his first job and the hours are long and it’s stressful and so I support him by making his lunch. I don’t have much in common with the boys. I don’t like sport or the gym but it’s little things like we laugh at dad (husband) having a ‘melt’. And I call the boys ‘G’. ‘ Yo G, that’s sick G, that’s bare funny G. It just makes me laugh the slang that creeps into their vocabularly. Some days my head pain makes it hard for me to handle their bantar or hear their rap and grime tunes and it’s sad the barrier myelopathy creates between me and those I love because I’m not present half the time…physically or mentally.
More and more I wander around the house confused…my brain leading me on a merry dance…did I make tea…did I put sugar in. So many questions and then I forget to drink the tea. I live in a whirl of confusion; it’s exhausting. So many things have gone wrong for me lately, my actions are wierd, my memory unreliable. I’ve started to lose confidence….I don’t trust myself with money or banking. I go to the shop for an onion and come home with an orange?
I’ve fallen three or four times…at night trying to get up independently to go to the loo. I know how it happens; it takes me so long to get up, I fall asleep midway and then fall out of bed or off the bed.
Every so often I have a bad day. Bad in the sense that I feel beat. It’s never one thing that causes my downturn more a receipe of woes. Usually I’m so Doris Day I’m annoying. I genuinely do find enjoyment out of simple things like going to M&S food store or going for coffee. Then some days I can’t be arsed, as my kids like to say. Getting showered and dressed is so energy draining. Ten minutes travelling and pain breaks through my medication. My neck bobbing up and down from our little car’s poor suspension. My neck toing and froing with accelerating and braking. Even with my neck brace on it’s guaranteed to set my symptoms off.
I have days when it’s like I’m in remission and so I fling myself at life knowing that it’s a mirage; one blink and it’s gone.
Last Saturday I partied. It must be strange for people to grasp that one minute I’m walking with my stick and then I’m dancing; carefully and conservatively mostly holding a chair. I want to grab the dj’s microphone and shout I’ve got spinal cord damage, it affects my central nervous system, yeah I’m dancing but I’m dancing badly! You should have seen me before I had three operations arsehole! Anyway three dances later my head is like it’s being squeezed by the Hulk and I can’t lift a foot and I’ve only drunk one watered down wine and two bottes of still water all night. But I had a slow release oxy codone before I went out, two tramadol whilst out then two tramadol every four hours for the next 24 hours. I was up all night, the pain too much to lie down. My skin was hot and horribly itchy especially my ears and scalp. I kept waking up unable to breathe for a terrifying second of two. Wrecked I spent the next day in and out of sleep the pain too horrible to lift my head off the pillow…but I will do it all over again at the next party…because otherwise I’m giving up and not participating in life. I love dancing…I’m just so bad at it now. With myeopathy it’s not a question of what you can and can’t do it’s what you’re prepared to do…I will dance therefore I will suffer and it will be self inflicted.
My life is not doom and gloom because I appreciate how privaliged I am to live in a country that is peaceful, to have water and electricity and supermarkets with the shelves filled. I love my family, my home, my garden, my dogs but sometimes I am overwhelmingly unhappy. I have no control over how low I feel or when it strikes. I can’t watch the news. Every life lost, people going to food banks, gang culture, plastic killing sealife, a gay man beat up outside a club by a cricketer, David Beckham pleading not guilty to speeding and getting off, strikes a cord. It’s like I’m living everyone else’s drama as well as my own. I don’t understand the world I live in anymore and then it feels all too much.
I’ve lived with myelopathy for eight years; I’ve got through three operations all with a smile. Operations I can do; they have a start and an end, Myelopathy is infinite and the relisation that my life is on a loop overwhelms me. I will always live with pain, myelopathy will always curtail my activities, it’s a degenerative disease so my symptoms will only worsen.
I wanted to go Ireland; want is an insignificant word…I really, really, really wanted to go…I had every intention of going. My family were not so optimistic. They see how disabled I am. How my legs are so heavy I walk to the toilet like a Hammer House of Horror zombie. They’ve picked me up off the floor, seen me pop pills and drink tea through a straw because I can’t move my head the merest fraction. They felt my mum’s seaside location was too challenging; I’d have to sleep on the sofa because I can’t do stairs, it’s not wheelchair friendly, it can’t guarantee a hot climate, I’d mainly be housebound and my symptoms, like arthritis, are excertabed by damp, cold, wind and fairy dust! But I had this vision of walking to Whiting Bay. Listening to the tide roll in. Smelling seaweed…and I couldn’t let it go…thinking about it got me down. I have this vision of retiring to the little house on the clifftop…it’s a dream I refuse to give up.
When you’re known to your family and friends as the glass half full and yolo it’s hard to admit that you are seriously struggling with negative energy. I smile less these days. I haven’t blogged in months because I don’t want to drag anyone under the bus with me. I feel bitter that I was so near to getting my book published but my physical health and my mental agility has slowed me down. Not going to Ireland was the last straw. I felt trapped in my home, every unwashed plate left at the sink I wanted to smash, every hour that went by without an offer of tea I wanted to scream. I felt like I was losing it and that myelopathy was sucking the life right out of me. I wanted to go to Heathrow and get the first plane anywhere but even if I got a cab there I wouldn’t be able to get out of it independently! I won’t explain how dark my thoughts were, dark enough that they scared me and so I talked to my doctor.
My doctor recognised that it was a culmination of things getting me down: my mental agility, my weight, pain, how restrictive my smptoms make things, how housebound I’ve become. She reffered me to a memory clinic which I have since attended and already I feel positive that I’m not going to completely lose the plot.
My husband booked a weeks holiday in Turkey. We are on a very tight budget, this is a luxury we had not prepared for, we haven’t been on holiday in four years. It wasn’t Ireland but it was the next best thing; a small b&b with a pool, very hot weather and a complete break from everything. It was for seven days and honestly, I think I needed a month, but coming home it was lovely to see my children. The house was tidy, Caitlan cooked dinner, we caught up and I felt happy that I had my own tales to recount…usually I listen.
I helped Caitlan pack for her first year at uni. I watched my husband drive my heart, my inspiration, my best friend away but I know Caitlan’s adventures will have me laughing all the way to christmas. She’d only been in her new kitchen an hour when the fridge door came off in her hands.
I went to bookclub. Great food, great company. My watery wine. A new book selected. A new date to look forward to.
I’m not saying my melancoly is cured. My sadness goes too deep for that. Maybe it’s the start of depression, maybe I’ll suffer long term. I have been referred for counciling. I am seeing someone next week about my mental health. That’s something I embrace because I don’t want to drown in my own misery . I want to be happy and sing songy and get on my husband’s nerves with my chiperness. I want to dance with myself in the kitchen. I want me to be me.
2 thoughts on “Head Case”
This article made me cry . Cry for you and cry for me, the life we used to have. I admire you. I wait for your blog to come out. I feel like your speaking my launguage. Keep them coming. It helps to know I’m not the only one. Adore your colum, can’t wait for your book. Thank you for speaking truth to this disease. It helps. X.
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Thank you so much for your comment. I can’t tell you how encouraging it is. I like to think that although our lives have changed there are great things ahead of us. Sometimes when spirits are low and pain is wearing I forget that. I hope that you have a lovely weekend. Many thanks x