Ok here’s your rant from me! (I wrote this to him)
I'm sick of this bull shit....I'm tired of the new Joan of arc proportions of burning pain at night, I am sick to death of the muscle tremor spasms, ( clonus I guess that's what it's called it's this weird fluttery constant spasming when the muscle gets fatigued) I'm tired of never knowing if I'm going to finish the day walking or not, I'm tired of bowel days, I'm sick of waiting for a headache to tell me I have to pee or I have a UTI, I'm tired of peeing on a timer, I'm tired of the pee dance, I'm sick of not knowing if I'm hungry or not, I'm tired of eating a micron too much and having god-awful visceral pain, I'm tired of pills suppositories and fiber,I'm sick of not being able to sleep,I'm tired of this headache that won't go away,I'm tired of not acknowledging the feelings my body is having because to acknowledge them is to feel them, I'm tired of not being able to move my neck right, I'm sick of the huge blind spots when I drive,I'm tired of not being able to read without everything going numb and hurting, I'm sick of having to read two pages then stop to stretch my neck, I'm sick of having to use Dragon, I hate having a wheelchair in my life, I'm sick of this cane, I'm tired of not being able to do what I did before, and mainly I'm just tired!! I think I need sleep... I'm going to go make dinner now
It does no good to complain so I don't complain often, or at least I don't think I do.
(in retrospect I probably should not have been this honest with him, but I didn't think discussing health would ever be a turn on)
okay it's a rant
I understand --- 24/7 condition that is relentless is extremely difficult to handle ... please rant whenever you need to --- its good to lift it off your chest.
Baclofen does wonders for my spasms ... I get what you speak of in my legs and my arms from elbows down just buzz with electric spasms --- I hate it too.
Its difficult ... very hard and never yielding. You must though handle it with all the strength you have.
You have it far worse than me due to other issues - Nellie, cane, bathroom issues - mine is isolated ... I wish I could do something for you; I pray for you daily!!!
I want you to be better ... I want you to turn that corner and see and feel recovery now in your eighth month.
Yes it does good to complain ... it releases all that shit inside you!!! At least for a moment. Cleansing :)
If someone important to me asks ...
how are things ... how's your injury coming along I say ... imagine smacking your funny bone when you entire arm is "asleep" --- they can relate to this and acknowledge this sensation ... then I say - It's like that 24 hours a day, seven days a week --- they cringe ----- anyone else I say OK!
People don't know about SCI and can not relate. They see a person who looks "normal" and can not relate. WIFE the pessimist believes this will be my downfall in my litigation --- "you can walk, you go on nice vacations, you function --- they don't know what the fuck is wrong with you!!! I don't even know and don't want to know!" To talk with people who don't have the affects of SCI is complex ... many times they relate it to slamming their finger in a dotor, or being bitten by a dog - having lost of sensation for a period of time, maybe even two whole months!!! They can't comprehend the overall affects SCI have on a person and how differently it affects people. I guess if I were not a SCI victim I would have a hard time wrapping my head around it --- but if someone close to me has a condition I do wrap my head around it to the benefit of our relationship, much as I have researched and learned about menopause and WIFE being sexless, bitter and cold. And now we have our affair of the mind. The woman even killed her dog of many years, who she loved just because he was puking in the house. Dr Kevorkian, I kid her that she will do this to me if my condition worsens. One has to know what's what and waht causes this and that - at least I do.
Nobody said it was going to be easy - to live is to enjoy the ride!!!!!!!!!!!!!!!!!!!!!
Trust
Trust you are not taken aback by my statement of "affair of the mind" but I feel extremely close to you and think of you in almost every way most of the time be it our injuries, how you are doing/coping, YOUR SON’S football update, ... intimately as I have stated, etc. etc. ... so I just assume you knew I felt this way and it makes me smile, makes my day 50 times better than it was. Hopefully you are at least flattered ... I can only speak honestly with you, open and candid - its who I am.
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