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It’s raining in my office

For the last several months, it’s been raining everywhere I went.  I have looked for leaks in my house, my office, at the mall, at friends places, and on sunny clear days.  No matter where I go, it feels like it is raining on my face, hands, and arms.

The most obvious explanation is that I am one of the Gruesome’s, Fred and Wilma’s neighbours from the Flintstones who had that cloud that went everywhere they went.   Sadly it isn’t that easy but it’s a side effect of my diabetes.  I have a rare nerve disease which means that thousands of my nerves are constantly misfiring.  As explained to me, the rain drops falling on my body is how my brain processes what is happening to me and it happens in hundreds of places all at the same time.

While that is the good news, the bad news is that there are 20 to 30 places that are in excruciating pain at the same time.  They are misfiring really badly and have for years.  Looking back at life, my mom suffered from sciatic nerve pain but I really wonder if she was struggling with this.  They have tried to treat it with Gabapentin which coats your brain receptors and therefore softens the blow of the pain.  That is a great idea in theory but in reality it gave me really bad phantom feelings and therefore pain that didn’t really exist.  That and I couldn’t walk that well with my phantom feet and I had trouble picking up my car keys with my phantom fingers.   The only way to describe walking was that my feet felt like they grew several sizes and the rocker of my skate was off.  I could walk but it wasn’t natural.

Another solution was Oxycontin which is a rather addictive opiate based pain killer.  Of course they never told me that when they gave it to me.   I tried that and I wish I could say I enjoyed it but it left my constipated and emotional and for that know me, know that I hate emotions, especially my own.  A non-stop upset stomach didn’t help me.  If there was pain relief or a high, I didn’t get it.  That being said I have a freakish non-response to some muscle relaxants so maybe I was just resistant to everything but the side effects.

I was on Gabapentin and Oxycontin at the same time and I remember laying on my couch in terrible pain trying to decide if I was going to kill myself or not when I just decided to toss the pills and face the pain.  My doctor was shocked I had no problem quitting the drug.  Maybe I did but without emotions or constipation to bug me, it was like I was on drugs.  To be honest it made very little difference in the amount of pain I was in but I wasn’t as foggy which I took as a win.

Also the process of accepting that it was never going to get better was a big step for me.  It let me accept and process the pain rather than try to escape it.  I am told that I have a high pain tolerance but you can start to learn to live with it.

Since I have been diagnosed with neuropathy, I have been shot full of electrodes to see how my nerves are doing and the truth is; not that good.   I remember the first time after I was diagnosed that they tried my reflexes in my knees.  Nothing happened.  I felt it but my leg didn’t respond.  As they tried it again and again, I realized that this was not a good thing.  My legs are particularly unresponsive while my hands are deteriorating as well.  The result has been that I drop more things but I am starting to fall more often.

My balance started to go while I was at The Salvation Army.  I fell off my front porch one summer morning and broke my ankle.  I fell once while walking in the hall and several times stumbled into a wall.  This winter I fell twice on ice while downtown; both times in front of prominent developers locations who should have shovelled but in the end, I gave myself two serious concussions.  Well maybe the concrete had a roll in all of that but still…

Some on council have bugged me for my strong stance on snow removal after they voted it down.  I’d like them to try to walk through Mayfair or Nutana with my balance.  Even 20th Street, downtown, or Broadway can all be bad.  Walkable streets and neighbourhoods need to be that way for all of us.  

I fall at home now.  Generally getting up but often while walking around the house.  Walking has become a very deliberate and intentional act for me.  It’s weird to lose something like that and to be honest really scary.  I am not going to pretend it hasn’t been related to a bad bout of depression that I have struggled with this winter.  Well either that or the concussions but who knows?  Ether way I am taking the steps of handles in the showers.  My face hit my toilet bowl at a high velocity this winter.  Neither were impressed with that.

According to tests, it’s getting worse which means two things.  I have a closing window on a life of mobility and at least I am not going crazy.

I am not giving up.  There isn’t really anything I can do to stop or reverse what is happening but I can work out more and take some steps to make things better. I started to wear those geeky Vibram FiveFinger Shoes to slow the muscle atrophy in my feet and am working my core more at the gym and at home to help with balance issues.  The falling hasn’t helped my shoulder heal at all but it is coming along as long as I can stay upright.  Physiotherapy is helping a bit as well.

Of course another thing that Wendy and I struggle with is should I quit my job and go take a high paying job while I can or keep working with the homeless.  Working with the homeless doesn’t pay well and I don’t have any benefits at work which complicates the decision.  If I go, I feel like I am giving up but if I stay, it’s a gamble that can hurt the family in the long run.  

I get asked what the pain is like.  It either feels like I am being burned badly (which actually generated blisters), an extended shot of electricity, or a slow drill moving through your body.  It can be treated quite effectively by a naturopathic medicine called Neuragen.  A drop or two can stop the pain completely at that point but in times like right now, there isn’t enough Neuragen to stop all of the pain.  Being woken up 25 times a night by nerve pain take a lot out of you as well.

Before I discovered Neuragen and when they were giving me Gabepentin and Oxycontin all of the time, the pain was incredible.  The doctors would tell me that by next week the medicine would work and I would be fine.  At the time the only thing that would work is that I could grab my iPod and go for long walks in the neighbourhood.  I remember a couple of the local cops would stop me from time to time to see why I was always walking.  Later on they would see how I was going but I always hated to stop because if I could keep walking, the pain would go away and I could actually walk home and maybe fall asleep before the pain came back.  It was the worst time of my life and many nights I remember going out for the walk and thinking, “I should just end this tonight”.  I was never serious and while I will always disagree with those that choose death to end suffering, I understand it.

Now the pain is as bad or worse but I cope with it.  I know it’s never going away and never going to get better.  It is always going to be there, the question is how bad it today going to be?  The good news is that once I gave up all hope of getting better, it just became another thing and it could be dealt with like all other things.

What has changed for me is that the neuropathy has kicked it up a notch and now I need to deal with the lack of balance by figuring this out.

The good news is that this isn’t a terminal condition (although I am about 30 minutes closer to dying than I was at the start of this post) but a chronic condition.  It is just a chronic condition that is progressing at a rate I am rather unhappy with. Now if I could only find out where that water is coming from…

One Comment

  1. Erin Wilson says:

    I’m sorry to hear this Jordon.

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