Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts

Friday, March 22, 2019

Midnight Freight Train of Pain

It is again 2am and I am alone (Patrick sleeping) in this world of blinding pain. I am recuperating from pneumonia and then get an acute colon infection which is making that pain train rush in on me faster than I can cope with. This has been one of the longest 24 hours of my life ... going from moment to moment, minute to minute and then making it one hour at a time. This is what will happen now without the IVIG (Octagam) - I will go from one infection to another until one actually kills me. But the fight for Octogam can only continue next week when the physician has to complete lots of forms for approval from government for us to import the medication ... once we have that authority, we have to have a clinical evaluation of why I can't have Polygam, a motivational letter for the Octagam and a new script sent to Discovery. They will then decide if they are going to pay or not. It is going to be a tough one, but one step in front of the other.
When I am in an acute infection stage, I need my pain meds more often and I know my body and how much is too much - and what can be used in safe dosages. Here comes the problem - Patrick does not understand that and has a go at me every single time I bring the pain meds closer together .... always because he is afraid I will become addicted. So what?? I am dependent on it and I am not on pain meds for recreation use - why can't I have more pain free hours so that my life has a little more quality. I am left here in extreme pain because of his attitude and what he said to me this evening. I have taken a less powerful pain shot to satisfy him when in fact, I should have just said - fuck you and taken the pain meds that I have for just such an event as what I am experiencing right now. He does not understand that I am chronically ill but that I get acute infections which needs more medication and pain relief. I am spending a lot of time on the loo - just shitting blood. Please God, help me get through the night.

Friday, November 3, 2017

Small Dreams

Chronic illness is one of the most isolating experiences.  You become isolated because people just do not understand your reality.  They slowly move out of your life and get on with the lives that you used to be part of.  You feel left behind.  I am not lonely, but I am alone in this reality of mine.
People don’t understand me anymore – we talk past one another.  They have no idea of what my reality is like, but I remember what the reality of a healthy person is.  I hang my head in shame now that I remember my chronically ill grandmother and how little attention I paid to her.  She just could not leave her bed so did not take part in any family activities and would lie in a darkened room day after day.  Yes, I remember bathing her and sitting and talking to her as a young adult, all the while hoping that the visit could be over.   I understand now how isolated and neglected and starved of human company she was.    I have social media but in those days, there was no such thing.  How lonely she must have been.
Words cannot describe the horror of waking up sick every day and of being sick every minute of every day.  Some days are better than others.  Some days I can handle the pain but I get those days when I think I can’t take it anymore and just want to end it all. 
Miracles do happen and I am defying the odds to become part of the “normal” world again.  The verdict of “there is no cure” just refuses to sink into my brain to take me to a place of acceptance.  Every day I live by grace, minute by minute and some days hour by hour.  How I wish I could go to a park and swing like a child again, to walk on the sand picking up bits of driftwood and seaweed or to learn to fly a kite.  My dreams are no longer big dreams but rather dreams of normal things that I know will lift my spirits.  I know I won’t be able to walk on a beach again, but I could sit and watch the waves.  I know that I could be taken to a park and I know I could sit on a swing and soar through the air as though I have no care in the world and I know that I could be taught to fly a kite.  

But who will take me?  Who will teach me?  Who will hold my hand while I pursue these dreams of mine? 

Thursday, June 23, 2016

The Un-Measurable Leveler

We can measure length, depth, speed, intelligence, things that can be seen and things that can only be seen through powerful microscopes.  What can’t be seen cannot exist…right?
Not so with pain or nausea.  Pain is the great leveler and the un-measurable.   For the life of me I cannot imagine why, in 2016, we have nothing at all sophisticated enough to measure pain other than the silly question of “On a scale of one to ten…ten being the worst, what number would you give to the pain you now feel?” This type of scoring is next to useless.  The more pain you have endured in your life, the more you can endure.  Does that make it alright then to with-hold pain medication just because you can handle pain and give a score of 5?  What about the wimp who gives a score of 10 for a splinter?  Does that give him the right to adequate pain medication?

And then there are those doctors who constantly refuse or warn you that if you take that type of pain medication you are going to be addicted.  Who the fuck cares about addiction when your life is not worth living due to pain? 

Saturday, January 2, 2016

I Will Run

Lost like tears in the rain
I am lost.   Who am I and why am I here?  The same questions asked over thousands of years and yet, each one of us at some time or another will ask those same questions.  I have had an awful day so far, a day when I felt lost like tears in the rain, not knowing if there is any reason for being.  Today was the day I had set aside to kill myself.  I had decided that if I could not get any medication to control my pain, I would allow my spirit to leave this earth today.
Three weeks ago I was prescribed the medication – an injection every 6 hours which gives me 4 hours of pain relief and only 2 hours of despair – and that goes on day after day.  Four hours without pain is a gift that is indescribable to someone who has not had chronic and debilitating pain. 
Do I run away from or do I run to life?  And as though I hear the voice of God speaking directly to me I know which way to go.

I will run for my life and I will run towards helping my fellowmen.  I will forever run towards those who can't run, who can't speak, who can't choose ... I will run.  I will run to defend others, but I will run to defend myself and the truth at all or any cost.  I will run.