Thursday, April 23, 2009

Symptom Log: Day 11

  • Footdrop (Foot drags along floor during walking)
  • Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
  • Anaesthesia (Complete numbness/loss of sensation)
  • Neuralgia, Neuropathic and Neurogenic pain (Pain without apparent cause, burning, itching and electrical shock sensations)
  • Ataxia (Loss of coordination)
  • Intention tremor (Shaking when performing fine movements)
  • Dysmetria (Constant under- or overshooting limb movements)
  • Frigidity (Inability to become sexually aroused)
  • Depression
  • Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
  • Mood swings, emotional lability
  • Anxiety 
  • Fatigue 
  • Uhthoff's Symptom (Increase in severity of symptoms with heat)
  • Sleeping Disorders
  • Inappropriately cold body parts
Footdrop is back and it managed to take my entire left side with it this afternoon. I was trying desperately to get home as quickly as I could because I just can't stand to have anyone see me when I physically start to droop. I can't even be failing around Joe, because he doesn't need this shit.

I am trying desperately to get physically better so that I can start looking for a job in May, but every day it feels like one step forward, 18 to 20 steps back. I've called gyms looking for trainers because I can't do exercise by myself. I've called yoga studios in the neighbourhood and they won't help me because they don't understand my illness. One woman said that MS is just blockages in my chakras. She won't allow me to be physically coddled, because they don't support people not working out their karma.

Fucking dirty hippies. Why, East Van, why?

I am so emotionally and physically wrung out I can't do any more. I'm literally hunched over my keyboard like I'm melting.

This shit is bullshit. I give up. I just give the fuck up.

4 comments:

  1. Have you connected with the local MS charity? I don't know them - but if they're set up like we are, the provincial/local chapters exist to provide services, access to physical trainers etc.

    If they won't help you, let me contact ALS people - they won't be able to help, but they may have some reputable contacts they can plug you into.

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  2. Yep, and they set me up with literature, a peer support person who ended up being completely inappropriate for me and a support group that made me want to kill people.

    They don't really offer any other services other than a workshop for newly diagnosed people that I am enrolled in in May, a workshop on tax issues for the disabled, which I missed because I was sick, and they run the Supercities walk.

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  3. Did you ask for a different support person? Do they not have peers? Our provincial associations help hook up people who also have the disease and are willing to act as advocates and resources to one another.

    Let me see what I can find. Different diseases, so not sure I'll be much help - but I'll try!

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  4. I don't want a new peer support person with MS. The people who volunteer for that stuff are generally waaaay worse off than I am and are doing it because it's the only thing they can do.

    My social worker and therapist have told me that it's probably inappropriate for someone who hates people as much as I do to get involved with anyone with MS who's disease has progressed much further than mine.

    After all of my hellish experiences with peer and group support, I'll pass, thanks.

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