Inpatient Pain Rehab, In Impatient Pain

Dear Audy,

It’s been a confusing, confusing, week. I’m currently writing to you from my hospital room. It’s a nice hospital room…but I do prefer rooms in places that aren’t controlled by nurses and the bad food monster…like my house. That said, it’s quite apparent that I need to be here.

20090920 Self portrait


I’m having daily physiotherapy to loosen and straighten my jaw. This involves working the trigger points around my face, jaw and neck as well as stabilisation excercises…aka the physio holds my jaw and I try to open and close it without it clunking and shooting off to one side on the close. It’s clunking less than it was at the start of last week. So that’s good, painful, but good in that I can talk more easily now, which makes life easier in general.

The crappy part is that the rest of my body seems to be launching a sabotage mission against my efforts to get better. I’m pretty much flaring from my ears down…at least I can say it’s the first time I’ve ever done anything from the ears down only. Hurrah for firsts. I’m waking up in a ridiculous amount of pain and then I spend a couple of hours dozing and rolling and breathing and basically trying not to get upset that it’s 5am and I’m awake in agony. Stupid agony. It’s been a while since my limbs have all gone into burning flare at once, so it’s taken a bit of getting used to and I’m struggling to adjust. I was all set to paddle forward with my recovery, then I bit the chicken, now I’m out of the boat and swimming backstroke. I’m hoping I’m still heading in the right direction, but everything feels turned around.

I’m getting in the pool each day, however I don’t know until I step in how my body will react. Some days I get through my hydrotherapy exercises, some days I just kick back in floats and try to relax my relentlessly spasming muscles. One day I got in and had to just get back on out again as it felt like perhaps there was a plugged in hairdryer swimming down the other end of the pool. Today was one of the better days, I’m hoping tomorrow will go just as well and then I can push forward from there. Outside the pool I can do very little. Regular strolls, concentrating on my posture and about 10 minutes of yoga on the Wii, followed by heatpacks, massage and then a few more heatpacks and perhaps another massage. Which would be lovely if I were well and at a health spa, but in pain rehab, those nice sounding things can hurt a lot!

Where possible I’ve been attending classes in core stability and Feldenkrais. I’ve also been working on relaxation with an occupational therapist and had a couple of sessions with some pain counselling type people. The extra work and flaring means extra drugs and I’ve been a bit blurry. I’d hoped to do some more writing while I was in here, however I’m needing most of my energy to get through the days.

Huge thank yous to everyone who has left comments and sent me messages of concern and support on Facebook and Twitter, they help a lot. Please forgive me if my replies are disgustingly late…I’m hanging in there, I’m battling and I’ll be back to my regular positivity first programming as soon as circumstances allow.

Love & Pringles,
Caf

P.S. You know you love Pringles.

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  • 4 thoughts on “Inpatient Pain Rehab, In Impatient Pain

    1. Taylor Lane

      Hi honey –

      I caught your post on my FB page and wanted to write you.

      I love your style of writing – it’s lyrical and sumptuous and spot on. You have a way to illustrate how you feel and your experiences beautifully. I absolutely love reading your posts – I wish I were 1/2 as talented. Have you ever considered writing a book?

      KNOW you are being heard and thought of – all the way to the Cape Cod!

    2. Carol

      Girl..I am so proud of you!! Keep fighting to be well Caf..I know it’s hard, I know honey. I pray that you will feel better my love and the pain will ease up..it just has to. i’m here anytime hayley and please just stay strong and fight the good fight. You’re doing it..One day at a time mate!! love you. sending love & light.
      Always,
      Carol
      xoox

    3. Tammy Darling

      Hey Hayley. I am so sorry you are in so much pain, and the burning, i know all to well. You are such a trooper, I am so proud of you. I know this has been very hard on you, yet you continue on regardless. You are in my thoughts daily, i so wish i was closer to you. that bridge is not getting completed, i am sorry. the trembling in my hands, well i am lucky to hold a cup of coffee without spilling it all over. went to sign for a pkg. i got the other day and couldn’t sign it for tremors. but i shall not complain, you have been thru so much more. I wish i could take all your pain away from you, but know that is not possible. but if there is anything i can do for you, not sure what, but i would do it, all you have to do is ask. may i have your addy? i am soon getting ready for c’mas cards, as it will take me forever to write them out. would love to send you one. send it via fb private mess. or my email addy. Thinking of you lots and sending luv hun!Keep plugging on, you are doing so good! again I am very proud of you!
      xxxx
      hugs n’ luv alwayz

    4. Robyn

      I’m glad to hear your determination is paying off. Sorry about the flare’s…those suck! I think it’s so awesome that your in such an intensive program and can still be positive! Very proud of you! I’m sure you will get beyond this “learning phase” and will be helping inspire the younger RSDers out there going through similar programs, and i’m sure you can teach us old ladies a thing or two that will help us cope a bit better lol I’ll be tuned in for sure for any tip’s your willing to share. I’ve been missing your kwirky, sweet posts and am looking forward to reading your work. Thank you for being such a brave, beautiful person and for all the smiles you’ve been responsible for. Keep it up, please. and Thank;s :) <3

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