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.



2 thoughts on “Choices

  1. Thank you so much for sharing this! I’ve opted out of most of my life for the past 4 years. Family functions just aren’t worth the pain. Lunches with friends had to be magical (unrealistic) to be worth the pain. I wanted to save my pain free times for my husband or for physical therapy.

    Starting yesterday I’m working on a new mindset. This condition is not going away. So I have a choice, continue to be a hermit or be brave enough to LIVE!

    Reading this reminds me why I’ve been a hermit. But reading about you RECOVERING from your outing, ENDURING the added pain encourages me! Thank you!!


    • Hi Jennifer, i write my blogs in hope that it gives some comfort or information to others. I remember how isolated and in the dark i felt when I was first diagnosed. I hope that you have many worthwhile, enjoyable outings and that the pain doesn’t linger for long. x


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