Lights, Camera, Action

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 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.




One thought on “Lights, Camera, Action

  1. awesome – I can’t express how strongly I identify with your words. ‘_’ My C spine is (kinda) stable; w/o cord compression, but it still feels like some ferocious monster has grabbed me by the back of the neck. It never lets go. It doesn’t take coffee breaks, go on vacations, or even look away. I’m not giving up even though it’s tempting. I’m working on it….just very slowly. A few years back, I lost most of my strength, tactile acuity, and nearly all motor coordination.This week, I can wiggle all my toes and fingers. I recently caught myself reaching across my body with my left hand to adjust my powerchair. It was the same hand that brought so much joy chording my Martin 12 String and rolling out arpeggios on the piano. I’m telling my caregiver: “Small steps, gentle breath.” My primary care provider recently asked me: “Do you ever think about killing yourself?” I told him: “I won’t if YOU don’t.” I won’t give up and don’t you. At some point, I’m hoping we can jam (y) Until then…
    ❤ & 💡


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