— Read on youtu.be/RFHoddYyIRc
— Read on youtu.be/_2ZBnWTUaEE
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.
I think with any kind of disability it’s easy to withdraw from life. It’s not something I did intentionally it sort of crept up on me. Winter is not a good time. My bones and nerve damage react to cold, damp, wind. The streets can be icy and my balance is poor. I have to wear so many layers that getting out of my pyjamas compares with white water rafting. I have so many reasons not to participate. But that was then and this is now.
I’ve pushed myself to go out, meet people, resurrect old friendships. It’s energising in one way but floors me in another. Like Saturday. I went to a fiftieth birthday party in a function room some distance from where I live. Lots of my myelopathy friends are probably nodding their heads right now knowing that car travel is problematic. Every jerk, every bump results in discomfort. Getting out of the car was painful. It takes an immense effort to get to my feet even when supported. Once I’m among friends and the music bounces around in my head it feels worth it.
It’s not easy for me to socialise. I take slow release pain relief to keep comfortable but I can’t drink more than one Spitzer without severe head pain. So I never reach the point that most drinkers do when they are totally relaxed and conversation flows. I feel wooden, I think I’m just out of practice. With family and close friends I don’t worry about my choice of words, which regularly are unrelated to the topic. Instead of shower I might say flowers, instead of fridge I might say tomatoe…or I might say nothing…I go blank. I’ve been tested for Alzheimer’s but the result was negative. I know that myelopathy can effect the whole central nervous system but that doesn’t help me. I simply don’t know what to say after ‘hello’. Luckily friends picked us up in a cab and they’d gone skiing with lots of the party goers and so I picked up snippets of things to say.
But I danced. God knows what I looked like. It bloody hurt but for just a few minutes I felt amazing. It was following 50 Cent that I knew I was in trouble. Then there was the cab ride home during which I would have beheaded myself if I’d had a machete. Indoors I took some liquid oxycodone which knocked me out for a couple of hours but when I woke oh dear it was so bad. The worst I’ve been since I was carried out of Moons. I needed to go to the loo but couldn’t move my head. I actually laid there wishing I had a bed pan. Hours passed and looking at my husband fast asleep and knowing my kids were in their rooms asleep I realise I’m in a bubble all on my own; no one can help me. I consider can I make it to A&E and beg for a morphine shot but I can’t face the car journey. I think I fall back to sleep at about 6am.
I was in this self-inflicted world of pain till Tuesday night.
I must mention my burning. When I overstretch myself physically I get burning hands and feet. It is extremely painful, but itchy too and it affects my scalp; it’s nerve damage. It was so bad this time that minute tears on my skin appeared and it worked its way up my leg and arm. It looked like I’d shaved my legs and arm – badly. I had it for two days. Often I get it across my cheeks so I always have a brown bag handy.
On Wednesday I was very unsteady on my feet, swaying, falling to one side so Wednesday evening I went to the swimming pool and walked around in the shallow end trying to get my legs into some sort of rhythm. Slept most of Thursday. Went back to leisure centre Thursday night. Today I feel perky. No awful pain. No dizzy turns. Just shuffling around like I usually do and it’s comforting. It’s usually at this stage that I shun socialising. The pain scares me. Obviously I’m in constant pain, but I’m used to it and on a lot of pain meds. This other pain that I set off by physical exertion and car journeys is the worst pain in the world. I can avoid it. I can stay at home. On my sofa. Living through my books. Letting life pass me by. Or I can go to Rachel’s baby shower.
I’m going. Wish me luck. I’m an idiot.
I’ve decided to live a little, regardless of pain, regardless of speeding up degeneration. My last mri showed no further degeneration; my neck is stable and there is no cord compression; so maybe my lifestyle has slowed degeneration down? But I don’t feel alive. I don’t feel elated. I don’t get a rush of excitement. I don’t belly laugh to the point I cry. I don’t run along a beach until I’m so hot I throw myself into an incoming wave.
My life is careful. I rarely go to new places. The only new people I meet work for Amazon. My old friends think I’m a frigment of their imagination
The fact is this: I will never escape pain. It’s like a wasp; even if I stay calm and ignore it, the little beast won’t beat it…and possibly if I resume some sort of semi normal life it might trigger further progression. But I’m in a quandary because for the first time since this whole horrible chapter of my life begun I’ve experienced depression. There’s no point pretending otherwise. I was so down my forehead was scraping off the floor. Pain, lonliness, frustration, too much time looking backward and not forward got the better of me. I think I’m over the worst of it now but it did scare me. I think I’d rather risk further degeneration than be the person I was a few months ago.
I think my inability to write triggered it. I don’t know what’s going on with my spine or central nervous system. I’ve gone from writing easing my pain to writing setting it off. I’m not giving up even though it’s tempting. I’m working on it….just very slowly.
Intermittently I check out https://www.facebook.com/groups/myelopathy.support/ I don’t read as many or write as many posts as I used because of pain. However via this site I got to participate in a video to aid doctors diagnose cervical myelopathy. I didn’t have to think twice. Whatever I can do to promote awareness of this dibilitating disease I will. My husband was weary; he’s seen how I crash when I’ve over reached…but I’m more scared of not existing than crashing at this point in time.
It was so much fun. Filming in a studio in Covent Garden. Meeting doctors and cameramen. Having a microphone pinned to me. It was a mix between House and Grey’s Anatomy.
It was a bit odd laying down on the bed surrounded by cameras and lighting. My daughter was in the room and I knew if I caught her eye I’d start laughing.
So I’m on the couch and a very beautiful, vivacious lady doctor explains that this video will be used to train doctors. Watching it they will have to make a diagnosis based on the examination and my responses. She goes on to carry out an upper limb examination. In between scenes I have a coffee. They had biscuits too but my fingers are so unreliable they’d be crumbs everywhere; certainly in my hair. The lower limb examination is with a very dishy male doctor. My daughter concurred on this point.
The examination is a mix of me pushing and pulling and parts of me being tapped and buzzed with instruments. I find it really hard to respond to touch tests. It’s like eye tests when they say was it better first or second. It’s so hard to tell. My sensation is reduced in all sort of places on my body. I burn and cut myself and don’t feel it, I get bruises and don’t know how I got them yet pain on my external ears is so acute I can’t bear to lift them away from the pillow.
I’m not going to lie I was in pain. Both doctors were totally considerate, I could have stopped but I knew it wouldn’t subside for hours maybe even days. Earlier a car collected us; the journey was about an hour but it seemed much shorter. Grace and I were catching-up and having been raised in Central London it was interesting to see how much Soho and Covent Garden had changed. We even passed where my primary school used to be…but still the pain sets in and getting out of the car was difficult. Once pain breaches my shields its takes root. On a positive note it was good that the doctors got to see me struggling a little because sometimes my walking is very good. I was filmed getting off the couch. CUT. Walking straight and turning around and walking back again. CUT. The two scars at the front of my neck. CUT. The scar at the back of my neck. CUT.
The film company arranged transport home and covered all costs. But yes, the journey was painful…I took two tramadol on top of amitriptyline and pregabalin. It was excruciatingly hard getting out of the car even with Grace helping. Once indoors my husband held up the note I’d left him ‘towels are in the fridge’? My mind is a complex thing but he translated and hung the towels from the washing machine on the line. Dropping onto my chairlift and pressing up I had a smile on my face. I’d done something different and helpful and meeting new people was stimulating, filming was fun and I have something to talk about and blog about.
I intend 2018 to be diferent; for me to be different. I need to live a little. I’m not thinking big here…I’m thinking a weekend at a spa with my husband; sitting on tall stools at the bar, enjoying a glass of wine and making love in a bed that’s not ours. I want to go to a cocktail bar. I want a full body massage. I want to walk round central London; in and out of shops and have coffee in a trendy cafe that’s not Costa or Cafe Nero. I want to go to Miller and Carter.
I am disabled. I am in pain. In time I will get worse. At first this frigtened me because my children were young and I was scared I wouldn’t be there for them. But I was, even though it’s been tough on all of us. They are nearly all grown and I feel relieved and grateful. I think now I can push myself because when I end up in bed riddled with pain for a week I’m not letting anyone down. More importantly by reaching out to old friends and new friends I’m no longer isolating myself and hopefully that will prevent me from being glum.
Yesterday I perused some of the Myelopathy posts and it is so apparent that depression is a serious off shoot of this disease. It’s hard for fit and healthy people to imagine what it’s like to live with chronic pain. I mean, I go to bed in pain. It’s all over. Pain wakes me up, usually at about three. It’s like I’ve been crushed by a steam roller. The pain is so full on it takes me a good five minutes to breath through it and get upright. The intensity of it fades as I move, as does my rigidity, but the discomfort is still sufficient to keep me awake. I let the dogs out and made a cuppa and I sit in my bed in the dark and listen to music.
Going to the swimming baths and exercising in the water has helped my depression considerably. There’s regular swimmers to say hello to. I feel more body confident. The sauna and steam rooms are relaxing. I feel proud of myself for not just giving up. It’s winter and it’s not so easy putting on layers to go to a cold pool to then takes all those layers off. It’s a massive effort but I go, no exceptions.
What I’ve not been so good at is socialising but pre Christmas I did go out to lunch twice and it was so uplifting to meet my friends out of the house. So my quest is to get out and live a little, dance a little, drink a little, laugh a lot.
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.