Accept your fate

Accepting your chronic illness and disability is never easy.  Give it time though, work into it and let it mould you.   Don't attempt to fight it though, this will make you grow old fast.   In April of 2018, I realized after much fight that I would never be able to return as a child protection worker, never less a teacher.   I spent the next eight months attempting to come to grips with this.   All I knew thus far was how to be these things.  My employment consumed who I was.  It was my social life, and it was what I dove into.   I knew how to overcome disability, pain and work.   These were the systems that I was good at.  Being a workaholic and pushing through – being the “Martha” in the equation of life.

What I was not good at was taking time for myself and realizing who I was becoming.   I needed to accept what I had and realize that no matter how hard I worked in therapy, therapy was only as good as the therapist and doctor who preforms it.  They could only give me the coping mechanisms to push through, to adapt my life to the betterment of myself.  It was up to me, to face the hard stuff, and put these tools and adaptations into place.  

The rest, the hard stuff, is accepting who I was becoming and realizing that it is the tools that will assist; not replace who I once was.  I needed to accept this and overcome the emotional and mental block to move forward, surrendering myself to the new me.  In the midst of the transition I lost a lot of good friends in the mix.   

As the intensive Chronic Pain Management Program came to a close, I realized that that the clinic was my safe zone.  I spent six hours a day, four days a week there for six weeks.  I spent more hours speaking to the team over the telephone.  They were my crutch and I relied on my therapists for every breathing moment.  The safe zone is the difference between having others people supporting you and doing it all by yourself. 

I could feed off the attention and encouragement of the team in the clinic much like you can from the enthusiasm of well-wishing line in the roots of a swimming meet. But once removed from either of those situations it gets lonely in a hurry and how much you get through the hard times depended on me.  

At the start of the program I had a solid support network- team Sam that was ready to help me whenever I allowed.  They would jump at the chance to send a text, or a phone call to be there for me.  But as the six weeks went on, and the time after this dragged on, Team Sam separated themselves, as things got harder and more adaptations came into place.   I had to accept fate during this process.

I had to accept that I was not a victim.   I wasn’t going to live life on self pity and misery anymore.  I wasn’t going to wake up and go to sleep crying anymore.   I wasn’t going to be able to do things that brought me so much joy in the past.  Working in child welfare, camping, skiing, kayaking, writing and reading were gone.  These things also defined me to others and to myself. 

I no longer knew who I was and I did not have an identity anymore. The hardest admission of all was realizing that these losses were final.  I was walking with a walker, using a foot brace to keep my foot from dragging on the floor.  Using adaptive aids to eat, bathe and dress with.  Cue cards and apps kept my mind focused when my memory failed and the largest, have the catheter in me and having my urine exposed to the world to see.  This is how I saw and viewed it.  I did use my creative skills to sew a case around the outside, so that it was not as exposed to the world.  Once I did this, I felt more comfortable going out in public once again.  

I had to accept what I had lost before I could find what was left.  What could I do, and what did I want to do?  I started creating new outlets and routines for myself.  I would take time to pray both personally and with friends, joining the prayer team at church.   I could start swimming again during the day and I could spend time outside under a tree, listening to a new audio book.  Puzzles and mind games encompassed my day as much as aids and timers did.  I could still crochet, using the larger grips on the hook and I could bless friends with small gifts.   I could explore new pathways for myself, joining my new “chronic pain” friends for tea after exercise group.  I could be still and be happy being still.  

I could also join in programs that I never foresaw myself joining in before.  I joined Alpha Court Day Centre; for people whom were going through mental health issues.  I joined the NorWest yoga class, I dropped in occasionally to the PACE IT chronic pain program to revisit the educational classes and lectures.  I also practiced these activities at home, surrounded by solitude.  

I did have to learn to pace myself in all of these activities (See plan and pace post)  I could no longer go, go, go, drop and sleep.  My day had to be well formulated and planned out in advance.   Spontaneity was not my strong suit anymore.  I knew if I did, I would pay for it the next day, week, or month. 

It was a painful, loss. Acceptance was so difficult and the framework I had chosen with which to move ahead before and after. I find myself making comparisons between before the onset of the injury when I was healthy and strong and could do anything whenever and wherever I wanted and after the injury had struck when I could do so very little. It was a natural bit of a dangerous comparison. It also triggered feelings of embarrassment, shame and guilt.

Embarrassment or shame because I hadn't always been more than healthy.  However, I was able to control my pain in a way that gave me successful quality of life.  My lifestyle reflected on that. I ate well, never smoked or did recreational drugs and exercised.  Most of the time it was a good life. The losses I felt guilty before.  These were because I wondered if I had done something in my past for which God with settling the score.   I became upset with friends and family who took their lives for granted and viewed myself ‘sicker’ then them.  I regretted the day of the injury, the day I found the pain and these anniversary days soon encompassed my life, and thus, I needed to move on. 

The main outcome of accepting my fate as a disease survivor was the evaporation of the embarrassment, shame and guilt that I had carried. 

I was human and I had emotional and mental breakdowns.  But thankfully, there was the friend, the family member and the therapist who helped pick me up again.   My church was behind me, anointing me with oil when I needed to be picked up again.  Suicide was real.  However, I knew that how deeply I wanted to swallow the pills and end it, that on the other side, this is how deeply people actually cared about me, and knew how strong I was.  

I was alive again, and content with what I and who I was.  It was hard, bloody hard.  However, I was free to explore and test the limits.  If I fell, I got back up again and continued testing what I could and could not do.    I give credit to William Sutherland and “Acceptance is not surrender” novel for this piece of information and criteria as it was the foundation – building blocks for how I overcame my world, that was crushing down. 

One of the successes that really assisted me with my daily struggle was my worry wheel.  This is a wheel that I made, with all my worries coming out of the spokes.   I allowed myself five minutes in the morning and five minutes in the evening to pick a worry, and only think about that very thing.  After my alarm went off, the worry wheel went away, and I started me day all over again.

My life was never easy, and success was along way off.  My therapists always commended me on my effort, the reliability of attending and being fully present, in the sessions.  It was my inner strength and determination to beat this disease that got me to where I am today.  No, I am not healthy.  But I am not sick either.  My mind is in control of my body and it is the stress that fluctuates the nervous system.  The pain scale varies in how much I feel control of the day, and the powers the lay in it.  I am more assertive and more vocal about my health care plan.  I am realizing that I am in control and that we need that in our daily lives.  My job isn’t to contribute to the betterment of society at this point, but instead, to get myself better to a place where I can function!  

Just keep swimming and be kind.