Under The Weather

Dear Audy,

I feel like I am falling into a bit of a funk. Or perhaps, I fell weeks ago and I’m still just scrambling around in the quicksand. We all know how helpful it is to scramble in quicksand, but I need to do something to try to get back out again.


The change of seasons always knocks me about, regardless of which season is blending into its successor. Currently the days are shorter, the cold is crisper and the days of overhead grey are becoming more frequent. Thankfully, the sun is shining this morning, which is a lovely mood booster.

Last week, I thought I was finally getting out of the sludge, until I went to my regular osteopathy appointment and discovered that my jaw had become so tense that it was sitting out of place. It doesn’t exactly fit in its place anymore, so it’s usually a bit wonky, however this occasion was much more severe than usual.

Due to my current inflation in hypersensitivity, having my jaw massaged and re-aligned was rather excruciating. There was no talking from me for a couple of days.

As is the usual case with Complex Regional Pain Syndrome and Central Neural Sensitisation, one problem led to more. The jaw pain triggered extra tension through my neck and shoulders, which set off more pain and (most frustratingly) has left my hands flaring like it’s 2009.

Typing this is unpleasant, but I’m getting very bored and don’t have the option of using voice software and having the writing process hurt any less.

Despite my mandibular setback, I still managed to drive myself to my appointments this week. I am learning to drive in a more relaxed state and thus cause less pain, however I can’t help suspecting that my extra time behind the wheel is also contributing to my hands flaring.

Then there was the day that I was feeling a little better and so put all my energy into cleaning. I hate not being able to clean when I like, not being able to do my laundry or clean the floors. I try to pace these activities, but I’m still at a level where the pace has to be set to minimal chores and maximal rest. I can’t get maidy with it on days when I have to do anything else. Exciting lifestyle, huh?

It’s hard to handle the knowledge that independence can literally cripple me; crazy to comprehend that taking care of myself means hurting myself. I’m thankful that I’ve pushed myself from wheelchair to my current condition by working through similar painful adjustments, or I’m not sure I’d be able keep trying to find a pace at which I can keep my pain down and still be productive.

I don’t think I ever will, but I have moments every day when I want to just give up. When I don’t want to deal with the pain, the rehabilitation, the uncertainty so badly that I’d do almost anything to leave my body.

The only choice that I have is to try and let go of the negative thoughts, try to relax both physically and mentally, focus on how far I have come and do as much as I can, by way of meditation and Feldenkrais, to get the pain level down.

I so desperately want more choices. I want to write, I want to sew, I want to cook and shop and clean on my own schedule. I want to study, to work, to earn money and go on a holiday. I want to wake up with the knowledge that the day ahead is mine to do with what I please, not just what my body will allow. I want the choice to be lazy, I’m so tired of having incapacitation thrust upon me.

It does us little good to want for things that we cannot have, so I am working on that. I will keep trying to do the things that I can do and keep believing that time will allow me to extend my repertoire.

Love & Longing,

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  • 6 thoughts on “Under The Weather

    1. Blake Watson

      I know what you mean to some degree. Dealing with disability can be cruelly difficult. I went on an 8-week trial with Automattic (makers of WordPress.com) but I had to quit because I simply couldn’t keep up the rate of typing needed to answer an appropriate amount of support requests.

      Disability makes everything harder. Sucks really.

      If our bodies had their way, we’d not accomplish anything. So here’s to telling your body how it’s going to be, whether it agrees or not.

      1. Hayley Cafarella Post author

        Thanks, Blake! It is difficult to do things regularly with a disability, I’m sorry that you had to quite the trial :( I am not even thinking about work at this stage, it’s just not possible! When I can count on myself to be able to feed myself, I’ll start thinking about work ;P I’d like to go back to uni too, but just gotta keep at trying to heal and get in a position that I can do so :)

    2. Della

      Yeah… like that. Struggling to keep my head out of the black cloud here too. Have to move again. That adds so much pressure that it’s about to do me in.

      1. Hayley Cafarella Post author

        HUGS!! Season changes suck. It sucks, but you are totally tough enough to get through another move. I really hope you are able to settle in the next place! xx

    3. Jeanne


      I’m really sorry you’re in the quicksand right now. I’m throwing you a virtual life preserver to pull you out. xoxo


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