Tuesday, 17 June 2014

Disability Dolour

My initial realization that I would have issues with my physical abilities for the rest of my life coloured my vision bleakly.  I saw all the things I would never be able to do, all the the negative things I could become.  Would I become obese, extravagantly overweight because it is painful to workout?  How could I play with my children if I'm always in pain?  How can I care for the house if even the mildest of activities brings on agonizing pain?  Experts try to tell you to focus on what you can do, but when the list of what you can do pain free has now diminished to something that could fit on a post-it note, your outlook on the future changes.

Something I didn't expect to be so affected was travel.  Driving has been diminished greatly, but I never factored in how flying and travel outside of my province would increase my pain.  One thing I never thought of: what if a hotel has no baths?  Honestly, what hotel does away with a bathtub and only installs showers??  (Save one "accessible" room.  Only ONE in an 8 floor hotel.)  Radisson on Queens Quay in Toronto did.  I got to see how much I rely on the pain management I get from being able to soak in a hot bath.  I was still in pain for days once I returned home.  Now that I have back issues (and when I say back I include my shoulder.  When you "lay on your back" your shoulders are not excluded) I have to start calling up the expected hotel and demand a room with a bathtub.  Really???

Know what I'm extremely tired of, however?  I mean mentally and physically tired of.  Having to "prove" my pain.  I've seen how many specialists, physiotherapists, etc, and all of them tell me I'm stuck like this.  The insurance companies and lawyers see my records and say: "Go see this new impartial specialist that we hired so we can try to find some sliver of hope that you improved and cannot be considered disabled" "Go see another physiotherapist that will say the same thing but maybe will have a new approach that will miraculously heal you" "Why aren't you seeking therapies that cost you hundreds of dollars monthly so you can feel better-ish?"

Well, let's see...  Every time I go to a new "impartial" specialist, I have to plan care for my kids/home for the day or two after the appointment because the pain doesn't stop the second I leave their office, I'm in agony for 24+ hours.  Forgive me for getting frustrated with your concept of "it's only for a couple hours" or that the pain doesn't affect anything after I leave.  NEXT, no specialist/therapist has seen any chance of this repairing itself, no pill/injection has taken away the pain, and surgery is NOT an option.  And, now for my favorite: money.  We're paying our bills, staying afloat.  I cannot work.  I can't just go out and get a job, even a part time job, to help compensate the extra "hundreds of dollars" that I would need to get more therapies that are not covered by MSI.  Behold the catch 22!  If you want to feel better you need money!  If you need money you need to work!  I cannot work because it causes so much pain I cannot do the simplest of activities at home!  I have pain that makes it hard to concentrate, think, process, but to outsiders "it's just nerve pain".

I'm trying to accept what I can do.  I'm trying to not feel like I'm useless since it hurts to do anything basic.  I'm trying to deal with the hateful glares when people see me use a disabled parking spot.  I'm trying.  That doesn't mean it will not make me feel shriveled up inside, a ghost of the person I was once capable of being.  A shadow of the abilities I once possessed.