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.