19 October 2018
— Read on youtu.be/LfZOyQjtnfc
my penultimate vlog on me, MYeloPATHy and mental health. Thank you for watching
19 October 2018
— Read on youtu.be/LfZOyQjtnfc
my penultimate vlog on me, MYeloPATHy and mental health. Thank you for watching
— Read on youtu.be/RFHoddYyIRc
— Read on youtu.be/_2ZBnWTUaEE
My mood over the last month has swung, dived and crashed. It has been a bit of a bumpy ride for me, my family and my marriage. Sometimes I pass a mirror and catch a glimpse of myself and I look so stern. I’ve always been smily and giggly, one of those happy annoying people, but longterm pain has altered that. It’s evident on my face, I see it in my eyes, pain and impatience. My patience used to be infinite, the only time my back would be up is if someone was being treated badly. Now the smallest things upset me; like a dirty plate left in the sink. I’m snappy and blunt. I’ve never suffered PMT and I think I’ve gone through the menopause but I can’t confirm that because with myelopathy everything else goes on the back burner. I’ve never discussed the menopause with my doctor, or HRT, so maybe there are other contributing factors to my moods.
What’s really affected me is my inability to write and blog. I was so near to getting my book published and then crash, I’m hit by the myelopathy bus which now has a passenger Fibromyalgia.
Myelopathy pain is very specific and recognisable to me. It’s in my head, neck, shoulders and arms. There’s a flavour to it, like a cough candy. My medication has pain under control once I’m static; bending, reaching, lifting, the car – then I’m in trouble.
Fibromyalgia though is a monster. It floors me. You could count to a thousand and I’m not getting up. You’d think that pregabalin, amitriptyline and tramadol would contain it but no…it’s that bad guy that keeps getting up again and again.
It’s a very common condition, particularly in sufferers of myelopathy. One day I’m doing ok the next I’m so stiff I can’t turn in the bed or sit up and pain runs the length of my body which is sore to the touch. Moving my head is a very bad idea. There are three symptoms that I find the most difficult to cope with: IBS, exhaustion and mental impairment.
I’m at the stage now where I eat mainly soup, toast and mashed vegetables. Everything sets my IBS off and the pain in my stomach is debilitating. I also suffer from lower back pain, I have a couple of deceased disks there and in my thoracic area so when the IBS strikes it feels like my whole lower torso is in pain.
Exhaustion is the second symptom. I’m barely on the computer ten minutes when my eyelids flutter, my vision zooms in and out and I’m falling asleep. I sleep so much I don’t know where 2017 went.
So you can see it is hard to blog and to edit a book when your stomach has swelled to the size of a whale and you can’t remain awake. It’s also hard to edit a book if you are nonsensical. You’d think using my imagination, researching ideas and theasaurasing would exercise my brain.
Writing, reading, crosswords, word searches they are not working. Something is very wrong in the faculties department. It’s more than forgetfulness that comes with age. It’s not being able to ask for coffee in a coffee shop because you can’t remember that coffee is called coffee even though you are surrounded by the word and the product. It’s walking away from the cash point without the cash. It’s not knowing your children’s names. It’s posting letters without stamps. It’s being in the wrong restaurant when your friend is in the right one.
In the beginning these little peculiarities were infrequent and something to laugh over. Now they are regular and impact on the frustration I already feel because of my immobility. I’m now physically slow and mentally slow and my dream of being a published writer is slipping away.
Am I coping? I think so. I’m meeting friends outside of the house, going to different coffee shops but the journey in the car cripples me. I’m persevering with physio and my swalking. For each day I’m active I’m spending two/three days in bed.
This morning I was up at seven following seventeen hours in bed. I didn’t intend to blog, I only blog when I have something to say and today I do.
I remember when I was first pregnant. Every mother I came across imparted her words of wisdom. Some of which was invaluable, some not suited to me and some that was judgemental. Although pregnancy is a condition common to innumerable females each pregnancy is unique because each woman is unique.
Myelopathy is exactly this. We might share symptoms but our medical histories are different. How we came to have myelopathy is different. Many of us have other health issues. One person might need 10mg amitriptyline another 20mg. That doesn’t mean the second person is taking too much or not coping. After my first Cesarian I didn’t take any pain relief, not even a paracetamol because I was breastfeeding. After my first acdf I left the hospital the next day and never took pain relief from that point. Yet right now I’m on 600mg pregabalin. Knowing my history would you say I’m someone who can’t cope with pain or is it that my pain is so substantial I need that drug? Maybe right now that drug is weakening my kidneys. If I stopped taking pregablin I would be suicidal – undoubtedly.
As someone whose body used to be a temple; no drugs legal or illegal, no smoking, very little alcohol I take whatever tablets available to make today as pain-free as possible so I can enjoy my family.
My point – don’t tell depressed people to cheer up, don’t tell people on meds to cut down – we’re neither doctors or physcologists.
There is no tomorrow if you can’t live today.
Sometimes friends ask you – if you were a dog, what dog would you be? I like the idea of being a pug. Everyone loves pugs. My myelopathy body has numerous folds now so there is a resemblance.
But I’m a husky. I’m strapped into a harness pulling Scott and his bloody kit across the Antarctic.
I’m in a slump. No matter how positive I endeavour to be I can’t shake it. It’s like I punish myself because six years of having myelopathy you’d think I’d know my limitations. Yet I keep going around in a circle, chasing my tail the way disturbed dogs do.
I get these short periods of time, when I’m not in pain, I’m not dizzy, I’m not so rigid, I’m sleeping well and I think, yeah, I’m feeling pretty good. I quietly, slowly reintroduce some of my old routines. It always starts with a wash, I love the smell of clean clothes as you pull them from the drum. I lower the clothes line so it’s at shoulder height. It’s so rewarding folding dry, fresh clothes. Next comes the dinner. Pre myelopathy I was never a microwave/takeaway/chicken nugget mum. I’m not skilled in the kitchen but I do the basics well. It’s not easy preparing food when you have poor grip and little oomph but I put the radio on and putting a dinner in front of my kids is so rewarding. Already the spasms are returning, the head pain is increasing, but I haven’t done the taking the bus independently to the shops yet. I wait for the right moment, for when my husband has gone golf, so that he can’t list the thirteen reasons why not to leave the house alone. I potter in the charity shops, peruse Aldi, I can’t actually buy anything over featherweight because I can’t carry it, so I splurge in the bakers for cakes for the kids. Ok they’re sixteen and seventeen but a Belgium bun still puts a smile on their faces. On the bus back I’m breathing hard, shit my head hurts, I want to cry by the time I get off the bus and as soon as I put the key in the door I’m nearly sprinting to the medicine cupboard. I’m alone, no one to see what a fool I’ve been, what I’ve needlessly put myself through – Mission Impossible – The Bakery. No one home to make me a cup of tea. My hands shake trying to get the tea caddy top off, it takes two hands to lift the kettle. The pain is intolerable, I mean I just want to shoot myself. I sometimes feel, just fleetingly, that I don’t want to do this anymore, I don’t want to suffer but the pain passes, sometimes in an hour of taking pain relief, sometimes in a week. What knocks the wind out of me though is that reinforcement that I’m pretty f**ked. Nothing is going to make me undisabled. I will always be on hard drugs.
It’s never much good feeling sorry for yourself but it’s not healthy thinking it’s mind over matter. If your spinal cord is damaged, it stays damaged. If you have a degenerative or progressive disease you are going to get worse. I won’t say you can make it easy on yourself because that’s never going to happen but you can make it harder on yourself.
My last point is this, I think I’ve always been disabled aware. I see people struggling like the oldies and I’d hold the door, help. them on the bus, things that the normal ok person does to be helpful and considerate. I’ve never been very mental health aware. I could say I don’t know anyone with mental health issues but I probably do, they’re just bottling it all up. I think honestly I have mental health issues. I feel so low sometimes that it’s like I’m fathoms under the sea, so unreachable that I feel totally disconnected from the world. I cut myself off from Facebook, from writing and sometimes hours pass, days go slowly by, I’m staring at the tv but I don’t connect with it, I sleep a lot and it’s like I’ve disappeared.
Today I’m back.
It occurred to me yesterday that living with myelopathy is like a compendium of games.
The day usually starts with The Cube. How many attempts will it take to get the lid off the coffee jar? The game requires patience and concentration. I focus on keeping my grip tight. I need the audience (my family) to be quiet; a casual comment like good morning and coffee granules are crunched underfoot for days. Oh dear I have to use my ‘simplify’; “Kitty! Would you fill the milk jug for me.” Did I put sweetener in? I did. Did I? I ‘ve done years of trial runs but still the game challenges me. People may presume that being at home my day drags but no. Half an hour goes by and I’ve yet to get the coffee lid back on the jar. I’m so busy my coffee is cold. God I love it when someone makes me a cuppa.
Much of the day is spent playing Cluedo. Is my iPod upstairs in the bedroom or in the kitchen with Caitlan? Is my phone in the front room with Paddy? My tablets are definately in the bedroom with my husband. My book? That’s in the garden. I get my cane, take a step down onto the patio, holding the grab rail and then shuffle. My right leg doesn’t lift without considerable effort and I can’t afford to fall over again. Whoosh it’s the afternoon and I’ve done nothing but boy do I feel tired.
Scaletrix. I need the loo. In the chair lift I settle. Finger on the up button. Staying on the track isn’t the problem, it’s maintaining finger pressure otherwise I stop prematurely and beep. It’s not as fast a ride as I’d like and the ride down is a bit hairy – it’s the vertigo that does it.
Twister is the most physical. I can’t bend. Crouching down to the fridge I get on all fours to rise. Well that worked yesterday. John! Patrick! Caitlan! Help! I can’t get up. Rolling off the sofa I’m on all fours again, a hand on the coffee table to leverage myself up – oops – here I go balancing precariously, doing a reverse mexican wave. I put a hand on the door to steady me. Concentrate. Slowly…put…one leg…in front of the other. Ahh. Ahh. Ahh. Bugger that spasm was bad. Why is my right leg a foot behind me. It’s so heavy. It’s not moving. I think I’ll have to sit the next round out. Maybe a lay down. Gosh it’s tea time.
I think Articulate is the most frustrating. Verbalising is increasingly challenging, the words I want are rarely in reach. I confuse names. My word selection is dysfunctional I say wank instead of wink, tart instead of smart. (My friends really give me dirty looks lately.) I stop midway in sentences because I lose the thread of what I’m saying. I need…I need…oh what’s it called? It’s red….it’s jelly…not jam…it goes with…with…oh what’s this meat called? Turkey! Yes. It goes with turkey. Cranberry sauce shouts Paddy – yes Paddy that’s it Cranberry sauce. Nope we don’t have any. F**k! It’s funny how that particular word rolls off the tongue more easily every day. I say it quite eloquently I think.
The physical toll myelopathy takes is difficult to cope with but the mental strain and stress are as debilitating. Holding a conversation, banking, shopping; these are all challenging. I like to think I’m a generous person. Twice I’ve walked away from the cash point leaving my money in the machine for the next person to spend. At the checkout I need to focus – on my pin number – remembering to remove the card and put it away safely….whilst the cashiers are chatting to each other, laughing. I feel like screaming – Please! Just for one minute concentrate on me – the customer – who is obviously a bit dithery and in need of some support. Oi and you behind me Mister – the more you tut the slower I’ll go!
The last game I play?
Come on lot’s of you have played it too.
Hope your surgeon has a steady hand – buzzzzzzzzzz.
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:
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.