19 October 2018
— Read on youtu.be/LfZOyQjtnfc
my penultimate vlog on me, MYeloPATHy and mental health. Thank you for watching
#paralysis
The upgrade
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.
Clarity, hope and a big smile
The beginning: my admission to hospital via a&e was very confusing particularly as I was in the kind of pain you imagine when watching Hostel. So I was never going to grasp what was wrong with me even if they’d spoken. Like. This.
It wasn’t trigeminal neuralgia. Nor was it a stroke. The MRI of my brain was clear but the image inadvertently captured the first few disks in my cervical spine which were congenitally fused along withcervical stenosis
When you’re admitted to hospital there is no induction. They didn’t give me a welcome letter introducing my consultant or the time of his rounds so my family could sit in. There was no myelopathy pamphlet explaining my condition or written diagnosis or care plan. So…my husband’s ringing me, I can hardly speak I’m in so much pain and for the tenth time NO I DON’T KNOW WHAT’S WRONG WITH ME!
I had a second MRI, of my spine. A few more days pass. It’s not visiting time, so I’m on my own, when a neurologist pulls the bay curtains closed and sits on my bed. If he voiced ‘cervical myelopathy’ then in between his other words that diagnosis got lost. He basically told me I would be wheelchair bound and incontinent. I would have to have a colostomy bag fitted. My neighbours of course were listening, it’s hard not to when the curtains are dramatically drawn. They could not believe the abrupt, negative way the diagnosis was delivered. I phoned my husband, repeated what I recalled but NO I STILL DON’T KNOW WHAT’S WRONG.
I was transferred to Charing Cross to have an operation I knew nothing about – it’s an abcd I told my husband. At this stage I’m on every drug going including morphine shots – I couldn’t have told you my name.
At Charing Cross my situation becomes clearer but I’d never heard of Cervical Myelopathy – nobody had. Not my friends or family. My doctor? Ok, but he didn’t understand it. It sounded dead scary. To think that right that moment my disks were being gnawed away by some obscure, insidious entity.
At home I spent hours, days goggling myelopathy, spondylosis, stenosis. There was so little information available unless you were a dog. What did it mean for me? What was my future? Incontinence, wheelchair, bed bound? The doctors, neurologists, surgeons; all too busy to discuss my future or what living with this disease would mean. One doctor was contradicting another – the operation cured me – there is no cure!
I so needed to speak to a fellow sufferer. I felt like I was the only person in the world with a horrible, disabling, deconstructing disease that nobody was interested in. There had to be people out there, somewhere, with CSM or was it DDD or the other ten names it hides under.
I can’t remember when I found myelopathy.support; it was four or five years later, sometime after my third op. It sounds wrong to say I was delighted that there were people like me but I was. Maybe it’s immature to say I felt slighted that Cancer, MS, MN and so many other diseases are recognised and CSM, this painful, exhausting, degenerative, silent assassin that would repeatedly strike, wasn’t. My life was, in a matter of weeks, shattered and it was like ‘so what?’
It’s a huge bonus that Dr Mark Kotter is an academic neurosurgeon at The University of Cambridge who is clinically interested in gaining a better understanding of and developing treatments for, Cervical Myelopathy. I think he will bring clarity to the current mishmash diagnosis and reveal how CSM impacts on so much more than just our limbs. I feel hopeful that in the next five to ten years myelopathy will be a better understood and represented disease. I hope that leaflets will be in doctor’s surgeries and people will grasp that looking well doesn’t translate to feeling well.
In that respect CSM’s like ME. We share many symptoms. Not that I know much about ME but my daughter’s friend is a sufferer. I know it’s chronic, it’s fluctuating, it’s exhausting and painful. It’s just wrong for someone so young and vivacious to constantly cope with a body that’s weak when inside she’s bursting with ideas and aspirations. It makes me more resolute to live my life, to not winge, to work around my difficulties and not feel sorry for myself…well maybe just a little…who wouldn’t?
The reason I’m thinking about Alice Ella is that she was on http://www.channel4.com/programmes/first-dates/on-demand/65067-009 a programme I have never watched until last night and I liked how Alice used it as a platform to highlight ME. The programme was also well enjoyable.
I think about my own journey. The times I’ve wanted to scream in the faces of some very ignorant and arrogant health professionals. How it was easier to stay at home than attempt to explain to friends what the hell was wrong with me. To understand that participating in something as sedate as a coffee out means resting up the day before and struggling with pain the following day.
The Cambridge study and my friends at myelopathy.support have given me the confidence to discuss my health and how it impacts on my life – they’ve made myelopathy real instead of what people judged was in my head. When something threatens to break you, to impinge on every aspect of your life you need people to appreciate what you’re dealing with.
But you also need to get on with your life. You need to understand your limitations and be flexible and work around them. You need to chase your dreams and smile and laugh. I’m still working on my book and Alice Ella is singing. Her single 24 Obsession is waiting to download on my ipod. I’d love Alice’s single to do well, one because it’s wicked and two because her platform to discuss ME would increase. Check out the link below:
https://itunes.apple.com/gb/album/24-obsession-ep/id1246372370?app=itunes&ign-mpt=uo%3D4
In my dreams I’m on The Johnathan Ross show talking about my novels but more importantly myelopathy. I now have an informed, supportive doctor and the neuro team at Charing Cross are excellent but I would love to be able to stick it to the multiple nurses, doctors and neurolo-gits who have let me down over the years – who in their ignorance and lack of compassion have made me feel like shit! Can you tell that I’m cross?
There are so many awful things happening in the world. Sometimes they seem so deep and so widespread that you know whatever you did to help it would have no real impact. But we can help each other. We should help each other.
What am I actually blogging about? What I want is for Myelopathy to be as understood as MS so that newly diagnosed people don’t experience the complete bewilderment and frustration I came up against.
I want good things for people who despite their disability put themselves out there like @alice_ella_
I want to win the lottery, have a house with a pool, write a best seller, lose a stone, get stuck in a lift with Adam Levine, be able to cook without burning, be on Strictly Come Dancing. Have I gone too far?
That’s it. I’m done. Have a great day. Smile.
.
It
Thirty Years A Slave
It’s my wedding annivesary this month.
I don’t think my husband knows that. We’ve never celebrated it. Our lives were so busy with work and children and enjoying the moment that it got put to the back of the drawer.
So much has changed since I first fell ill with CSM…but most of all my husband. These are not criticisms they’re fact.
My husband expected
- a dinner on the table after work, something involving meat and veg
- the house to be tidy
- the children to be settled
If I typed a list of what I did and what he did I think I’d probably divorce him…so we won’t go there. Actually although I was a full-time working mother I was happy to meet his expectations. My nature is to care.
We ticked along nicely. Sometimes we had spats and fallings out. Sometimes I wanted to scream in his face that I was bloody exhausted from work and juggling kids and housework and cooking. Other times I felt this immense pride that I was a super being. I’d never been good at anything – I was so mediocre I blended into walls, doors, landscapes, skyline; I barely existed till I met my husband. His high expectations elevated me; I was an epic wife and mother. That’s not a brag – it’s true.
Without noticing myelopathy gradually and silently drained my power, sapping my life force until I was empty…until I crumbled.
I remember the morning my husband drove me to A&E. it was still dark. About 4am. We had to leave our eldest, 16, in charge of our other three. For me to relinquish my responsibility, to beg to go to A&E, meant I was in trouble.
I had no idea that my trip to A&E for some hard drugs would reveal that I was slowly becoming paralysed.
I was in hospital for seven weeks. Whilst I battled pain and disability my family began to disintegrate. The tight ship that I’d nurtured began to sink. Call after call. Questions. Hot air. Mini breakdowns. Slaming of doors. It was all happening. The Murphy’s in crisis. Blame was attributed to everyone and everything. Each Murphy had an opinion. Fingers were pointed, hurtful words were spoken and that was just day one.
I had calls from my husband. He’s never coped well with vagueness or ambiguity. How many items should he put in the washing machine – 10? No honey. Ten socks would be too little and ten towels too heavy. Just half fill it with anything.
My thirteen year old son calls. He’s been prescribed tablets for his acne. He needs to know how to swallow a tablet! I talk him through it, together the tablet is downed.
My sixteen year old daughter calls. She’s slammed the front door and leaves a shouting father behind. Mum he’s cracking up. We’ve no clean clothes, no towels, the smoke alarms persistently bleeps whilst dad burns, its chips every night and accusations that if we’d done more to help you wouldn’t be so ill. She says that’s something coming from a husband who can’t find his own socks and boxers without his wife.
My husband was not a new man; there were no moisturisers on his bathroom shelf – a man bag? Please! But what I love about him is he rose to the challenge. There is nothing my husband can’t achieve. As cups and coffee jars fell from my grasp, his broom and pan were not far behind. As I swayed from room to room, tripping up, slipping up, banging into everything, he pulled up mats and moved furniture. When my hands were too feeble to stir and too painful to mix, he picked up the wooden spoon. I remember when my body gave out and I was confined to my bed awaiting another operation. I was too weak to hold a book so he unbound the pages of a best seller and attached a few at a time to a piece of cardboard that rested on my chest – we called it a Swindle. I think that period was the worst time in my life. I couldn’t climb stairs so occupational therapy delivered a hospital bed which was in the front room, next to the window. I would watch the birds and the squirrels. It’s so silly really but I named them. My husband made ledges in the different trees and put bird food out to encourage activity. He conquered…the washing machine, the oven, the Hoover, the iron, even sewing. Following my third operation I had reduced movement in my neck – I could not look down, food kept falling off my fork, so he made a base raising my plate to mouth level. It was nice enough that I could bring it to the coffee shop or to a restaurant.
Marriage is hard. Family is even harder especially when you have adult children living in the family home. I don’t want to give the impression that it’s all Mary Poppins in our house. It certainly is not. My husband is my carer. We spend too much time together. It’s hard for me never to be alone. I’m quiet, introverted, happy with my own company. It’s hard for him not working. My husband is larger than life, opinionated, social. My disability has been harsh on both of us. There is no shielding loved ones from this disease because it is so erratic, so insidious, so damaging.
Like a kangaroo I bounce from one physical state to another. I’ve spent the last two days in bed with a pain in my head and neck the demobilises me. My mood dips, rises, simmers. Today I’m upbeat but I’m losing my balance, my head is cloudy, my grip has gone. I feel very confused.
Today my husband got up with the kids, he drove them to school. He popped into Aldi on way back for groceries. He’s walking the dogs now. On his return he’ll make soup and a sarnie. After he’ll tidy and hoover. Then he’ll think about dinner.
I know without doubt my husband has got my back. He’s researched myelopathy so thoroughly he could operate if he had to. We’ve always been a team.
On Facebook, on the myelopathy support group I feel sad reading comments about family members being unsupportive. I can’t imagine how gutted that must make you feel. I don’t know how I’d cope if my husband wasn’t hovering around, checking on me, making our home cosy and looking after the kids. He’s simply a different man. I fell in love with the old him…but it’s the new him that I continue to love.
My...Hell...opathy 