Chronic Neuropathic Pain & My Bucket List

Image by bernat… via Flickr

November 7th – 13th National Pain Awareness Week

Over the past 7 years I have experienced some of the worst times in my life. I had – and sometimes still do have – extremely dark thoughts. When the pain spiral won’t end and I can’t make it stop no matter what I do. When another Dr. treats me like a pariah. When a friend does not call me back. When there is ANOTHER party/event that I cannot attend. When I disappoint my daughters, because I can’t be a volunteer parent. When I look in the mirror and cannot recognize the enormous whale of an ass I have. These are times when the darkness will cover me and I can’t see the light. Remarkably though, Pain has brought some truly amazing and wonderful things into my life.

I was watching the movie “The Bucket List” with Morgan Freeman and Jack Nicholson. The two are in a hospital room with each other, as they are both suffering  a terminal and fatal illness. Jack Nicholson is the owner of the hospital whose mantra is “2 people per room, no exceptions’. Morgan Freeman asks him “You really said that?”, Jack responds “I was never sick before”. This statement is so true for all of us.

In their  illness the two bond and go on adventures to complete things they always wanted to do. Now as Jacks’ character has a whack of financial resources, the two are able to do all the things on their lists. My financial reserve is currently paying for my Healthcare – hence the Painie Chronicles. This movie made me realize I had completed things I had on my Bucket List – whether I knew it or not.

My life has been full of extreme experiences –  even without the pain – and over the years I have tried to extract the good or identify the learning experience from each event. When you are given a set of circumstances beyond your control, you cannot just accept defeat – you must pick yourself up, dust yourself off and move on in the right direction. There are some allowances to sit, cry, rant and rave when you have fallen down. Once you have vented it is time to get right back up on that horse.

With that in mind the following are a few things Chronic Neuropathic Pain has given me.

• I meet some remarkable people. People who should rightfully wallow in self-pity, but don’t. They are survivors
• I have found friends I probably wouldn’t have known how good they are. They accommodate my illness without ever making me feel like a burden or an inconvenience. They listen to me rant about Dr.s etc. without pause. They take care of my children when I can’t. They call to see if I am ok
• I find support through strangers – strangers who are out in Cyberspace with the same life as me – they obliterate the little voice in my head that says “you’re crazy, this pain isn’t real, you are worthless because why won’t a Dr. help you, you are faking it” These people who suffer like me, write down the almost exact same experiences with Dr.s, Nurses, medical professionals, family and friends. While, I would not wish this on anyone, it does make me feel better to know I am not alone.
• I have learned a lot about medicine, the human body and what an amazing vessel it is.
• I started 2 companies
• I learned how to make Natural Bath & Body Products – through research, experimentation and development. I learned about the FDA and Health Canada, Distribution – Marketing – Labelling – Insurance – Wholesaling
• I learned how to build Websites
• I learned how to do Graphic Design
• I learned how to do Blogs
• I learned how to master Social Networking
• I have discovered more about our Healthcare system, then I would have ever thought of
• I have started writing again

Had I not become disabled, I would not have done them. They allowed me to exercise my brain and distract me from the pain at the same time.

Now for the things I am truly blessed to have experienced:

• I know I married the best guy in the World. My husband stands by me when others run. He holds my hand at Dr.s appointments. He listens when I talk and offers a balanced perspective.  He is a very active participant in our children’s’ lives. He is my biggest cheerleader. He is patient, thoughtful and kind. If our marriage has survived this, it can survive anything.
• I have been able to spend a lot of time with my children. I saw their first steps, heard their first words, kissed their boo-boos and snuggled with them. I might not be able to go to every performance, event or presentation, but I do know who they are.
• My children have learned important life lessons. They have a different level of compassion because of my limitations. They learned skills early on, like dressing themselves, chores, putting things away etc because I was not able to.
• I probably have the best In-Laws going. They offer endless support and talk me through some very brutal experiences. They care for my children when I am not able to. They assist us more than they probably know.
• My Father is in my life; we were estranged for over a decade – my illness and children brought him back.
• I have some very good friends. Even though I mention that in my earlier list – it is important to note again – and they know who they are
• I have discovered Chronic Pain is an illness that does not receive the attention it deserves. I am trying to increase awareness and then understanding about how Pain Patients live. We need a voice, one that gets heard. I am trying to educate and inform people about the growing number of us.

Pain is something our body is trained to forget. A simple example is childbirth. It hurts, but we keep having them. We remember the mental image of pain, but we forget the sensation. Even I can look at video footage of walking with my children and not remember how much I hurt that day. We just keep going along.

While we are on that path, it is the little marginal changes each day that have the lasting impact. The cranky behaviour because we hurt – which impacts the relationships we have. Words that hurt are not as easily forgotten as an injury. The weeks when we are bed ridden and the fear of it happening again. The friends who slowly stop calling or visiting, because we are not able to actively go and see them. The family members who have slowly leaked out of our lives, because they are unable to cope our limitations. The jobs we are passed over for because we can’t do them. The small incremental changes that seep into our personalities.

To ensure Chronic Pain does not entirely envelop me, I have to focus on the Good it has brought into my life. I must be grateful for the positive or else the Pain will win. I was a stubborn, willful child and a brash, aggressive young adult. I am a stubborn, willful, brash and aggressive adult (can’t be called middle aged yet, sorry, it is my stubborn nature). These traits are partly genetic and partly environmental. I know these traits will make me win over the pain.

This week was Chronic Pain Awareness week and I am sure few were aware of this. I am determined to make sure this week is more widely recognized in the future – that is on my Bucket List. It will be another good thing Chronic Neuropathic Pain has brought to me.