19 October 2018
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my penultimate vlog on me, MYeloPATHy and mental health. Thank you for watching
#csm
It’s all in your head dear part 2
MYeloPATHy
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It’s all in your head dear – part 1
MYeloPATHy
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Pill-box-gate
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.
No.
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.
Pillboxgate.
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.
Slump
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.
The Cube
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.
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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
Hermit
I think I need to join a self help group; Hermits Anonymous. But that might mean leaving the house. Let’s pretend that I’m there now, it’s my first time and I’m sitting in a circle with you. We are in a cold, dusty church hall.
I really, really do not want to be here. I don’t know what to say to you. Well I wouldn’t would I…I don’t go out. At Alcoholics Anonymous there would be bleak, hilarious touching stories – being a hermit is quite boring really but as I’m here now I may as well unload.
My name is Alison, I have cervical myelopathy and I’m a hermit.
I’ve been a hermit on and off now for about six years but since Christmas it’s got progressively worse. I don’t Facebook, or blog, or write, or call my mother in law. Periodically something happens to me. I alter in some way. It’s not gamma radiation or kryptonite but it is something insiduous and weakening and I don’t know whether my physical deterioration effects my mind or whether a bout of depression effects me physically.
I think with any kind of disability or mental illness it’s easy to withdraw from life. It’s not something I did intentionally it sort of crept up on me. I probably need to tell you what sparked my addiction to my home but I know it’s going to sound like one long moan so I’m going to skip it and tell you a fairytale instead.
Once upon a time there lived a mother or four who was so busy working as a teacher, raising her family and loving her husband that she didn’t realise she was ill. Her illness was so stealthy and so unpredictable that years went by but the longer her disease went undetected the more irrepairable damage was done. The mother got slower and slower and tireder and tireder until one day she collapsed in a heap. The End.
My time in hospital was the bleakest, lonliest, most desperate time of my life. I was in so much pain and on a cocktail of drugs that seriously I wanted someone to shoot me and put me out of my misery. It was here that hermitting got a hold on me.
Leaving hospital was the second step toward hermitting. I was wheelchair bound with an operation scheduled that I didn’t really grasp. I was in immense pain. It was crushing – it’s in your head, between your shoulder blades, down your arms, in your toes. I had pins and needles in a body that was a fizzing bath bomb. It was like a constant low voltage taser. The two months before my op I was so debilitated I sat slouched in an archair; I physically couldn’t leave the house. It was the sort of pain that you can’t snap out of because it was constant and deep. I deliberated over my bag of drugs amongst which I had a large supply of morphine. Prior to myelopathy I was rarely ill. I only took paracetemol a handful of times. I think I had anitbiotics twice. Taking the drugs seemed like giving in. Should I take them all the time? Should I only take them when I’m in actual pain? I didn’t know. Family and friends said only take them when you’re desperate. I was desperate. I was bordering suicidal I was so knocked off my feet. Be strong, hot water bottles, vitamins, pilates! All those snips of advice might be helpful for someone who has strained a muscle or tweeked something but not for someone who has spinal cord damage.
I have my operation. When I come around I’m in pain but it’s normal pain, pain that you expect when your neck is opened up. Two hours later I’m sitting up, having a cuppa and the next day I walk from Charing Cross hospital to Hammersmith tube and take the train home. So you see I’m not a wimp or a fusser; I’m a can do woman.
Then things get a bit awkward. No one has heard of CSM. It sounded like something I’d invented. Also because I had an operation people presumed I was fixed. Other than Sharon and Paula when friends saw me out and about ‘you look so well’ they said but what they’re really thinking is ‘there’s nothing wrong with her’. But they don’t see me the next day when I can’t raise my arms to wash my hair, I can’t put my shoes on, I’m swaying around the house like I’m on a catamaran, I’m popping pills, my husband pulling me off the loo, I’m in bed and can’t raise my head off the pillow.
Imagine you are running a marathon and the last mile is killing you. Your limbs feel heavy, they’re burning from over exertion, you’re uncoordinated, your vision is blurring, it’s hard to breath…well that’s what moving around is like for me. It’s so challenging it’s easier to stay put.
Just because I have a smile on my face and a chirpy voice doesn’t mean I’m not disabled and being disabled doesn’t mean you have a leg and one eye missing. Myelopathy operates under the radar. You can’t see the head pain that has a stronghold on the brain or the muscles tightly twisting one day and loosy goosy the next.
After my second operation people begin to get the idea. Me too.
I have a third op eighteen months later. I do not want a forth. Ever. I now can’t raise my arms or bend without severe headrush, dizziness, pain. I can’t scramble eggs my wrists are so weak. Everything flies out of my hands, my grasp is poor. I’m slower and more unstable on my feet. I get confused easily. I can’t sit for long. I can’t stand for long. I can’t go far in the car, the poor suspension gives me nodding dog pain…but if I condition my hair, paint my nails, put some nice clothes on I look ok. So people make unthoughtful comments, they make judgements – why was she using a wheelchair last week but not today – they think its mind over matter. This all contributes to being a hermit.
To type this blog I’ve had to take 2 x paracemol, 2 x ibruprophen and 2 x tramadol in addition to my regular perscription of 600mg pregabalin and 75mg amitriptyline. My fingers hurt, they keep involuntarily flicking onto the wrong keys and I have to repeatedly backspace, it’s very frustrating.
I haven’t really facebooked, emailed, written, left my home much since October. I find Winter a difficult season. Getting dressed is hard work; so many layers; it’s so much easier staying in my pjs. So me showering and dressing is soldiering on. Me going for a coffee is soldiering on. I manage my pain by only doing what is in my comfort zone that day. When I’m tired or struggling I go to bed no matter what time of day. I used to feel guilty; a fraud when I felt well. Not now. I’m determined to take care of myself and enjoy life even when my life is within the walls of my home. I’ve been so poorly at times that I’ve conquered justifying my illness and explaining the hundred reasons why my husband is my full time carer. I don’t care that so and so had a back operation and now they’re playing squash – good for them or that so and so is in terrible pain with siatica but they still go bingo – that’s lovely but it’s not a competition on who copes best with pain, or who suffers more. I don’t need confirmation from others that I’m a trooper. I know I am but who cares anyway, I just want to laugh and be happy. Yesterday for instance I’d stiffened to the point of snapping so my husband drives me to the local leisure centre to swalk and with my float attached I stretched and flexed in the water in a way I can’t do on land because of poor balance. I had a lovely steam and hot shower and moisturised my skin even though my heavy arms burnt with pain and it was exhausting. I couldn’t dry my hair though because I couldn’t hold the weight of the dryer or raise my arms. Afterward we went for coffee and a pastry in Cafe Rouge, sitting by the window, the warm sun on our faces. Marks’ food hall is next door. I love looking in Marks. It’s an outing. When we arrived home I couldn’t get out of the car, it took my husband a good few attempts to get me out. I couldn’t straighten, I was bent over. My head was compressed like corned beef. My daughter unpacked the shopping and put it away whilst passing me ingredients to make sandwiches. I didn’t have a sarnie because my digestion now is crap and my weight continues to increase so I only have cereal for breakfast and one small healthy meal at dinner time. That evening we watched Line of Duty. I really, really enjoyed my day. I was able to chat to my kids, have a laugh, hear their gossip, tease my husband. Read a little. It was lovely; even though I needed painkillers I felt sprightly.
I’ve learnt not to dig myself a hole because I want people to think I’m brave and not wallowing in my drama. Tomorrow maybe I’ll have a bad day, maybe I won’t cope, maybe my husband will have to cook or the kids will have to sort themselves out. I don’t force myself anymore. Taking a back seat has been the hardest thing but life is so much more doable now that I’ve let go.
This is why there’s been a long gap between this and my last blog. I can’t be Miss upbeat twenty four seven, sometimes I feel overwhelmed by my recurring symptoms. I struggle with the inconsistency of them not that I want to feel bad all the time, it’s just hard yo-yo-ing between well and unwell. My condition can change hour by hour and that affects my confidence to go out. I continually make arrangements only to back out at the last minute. I have to be spontaneous and go hell for leather when I feel well. Like when I saw LaLaLand on a Monday and Split on a Thursday.
The real point of writing today’s blog is that I’ve returned to the brilliant https://www.facebook.com/groups/myelopathy.support after a long absence. I’ve read through the blogs and see fellow members experiencing the ‘work through the pain’ bullshit that I had to deal with. Keeping mobile is essential but to live with myelopathy you need to be realistic and accept limitations and you need a supportive family who are informed.
In an ideal world anyone diagnosed with myelopathy should be referred to councelling. because it’s such a mind game. An informed professional is needed who can talk to us and our family about the condition, what to expect long term and how it might effect our life. Husbands, wives, children, friends need to recognise that we’re an endangered specie. We need patience and understanding to help us conserve our energy and effort so that we have quality time. Often I’ve felt like I have a personality disorder, often I’ve felt dangerously low, all the time I yearn for the old me. The me that was going to be an active grandma in the future, the wife that was going to travel around the world with her husband, making love in the sea. Instead I’m a wife who has no feeling below the waist; that’s quite a challenge for a relationship. My identity has been torn up and I’ve spent the last years reinventing myself.
I’m two and a half years now without surgical intervention. I haven’t lapsed, I have not ironed or carried the washing basket. I have not hoovered or mopped the floors. My symptoms are returning though but I am being strong and determined and getting on with things but I no longer take risks with my health. I no longer pretend to be superwoman. I’m simply a woman.
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 