Is this all in my mind?..

For a very long time I have been controlled by Pain.
Pain has floored me, kept me awake, made me desperate, made me cry and stopped me living my life.

I have 3 pages of repeat medication without the dressings for my line.  I have attempted to deal with my pain recently by attending the Pain Clinic.

My pain is all day, constant, like the muscles are being ripped from everywhere. The pain causes cramps and pins and needles mainly in my limbs.  The pain causes headaches which can also cause double vision.  My muscles stay mostly in a state of contraction which causes me to sweat which makes me dehydrated.  When not contracted, my muscles decide to contract and relax in their own causing build up of lactic acid and exhaustion.  My muscles also choose to break down on their own called rhabdomyolysis which leads to high CK and then I cannot pass urine, my body panics and covers me in a rash similar to a histamine response.  I have dry mouth and dry eyes due to this never ending cycle my body puts itself through.  During the night my muscles are constantly contracting leading to a fever like temperature which means dehydration wakes me up.  This is my life. 

The most debilitating thing after the pain itself is the fatigue. A deep, never-ending bone weariness that makes simple things seem like obstacles and a restless sleep that does not provide respite from the haze of exhaustion.  The combination of chronic pain and fatigue combined compress my resilience.  Emotionally, it feels like small disagreements loomed large. I find myself more reactive than before, taking everything personally.

Last year, after the rituximab, I went through long periods of just going to sleep.  I think, having never really suffered from anxiety before that I started to get anxious that when combined with chronic pain felt paralyzing. Worrying about whether I could carry on like this was my main concern.
To outsiders, I often look ok, sometimes healthy, even though I am in pain all of the time. They meant well, of course.  It’s as if people expected me to will it all away. If only I had thought about being more positive!

When my pain became chronic and full time, everything that I did before, the things that used to help, used to be part of my life, like going to the gym to work through it, playing golf suddenly became part of my pain instead of being pleasurable, so it all had to go, the gym immediately and gradually my golf. 

No matter what challenges I faced in my life, I always got through them but this time the pain was ongoing and frustratingly opaque and I wasn't going to win this challenge.

I have accepted what is unmanageable and I have tried to not control what I cannot change, I needed to do this to move forward, I needed to change from my old way of thinking. It is the only way that I have been able to move forward, It has meant accepting my pain and not battling against it anymore. 

The single most important, most difficult, most fundamentally frustrating thing for me is this is my life, my chest line allows continual treatment and this is my new reality and I can and have to move forward from this point.
No matter what moving forward looks like, whether its crawling on the floor, a millimeter at a time or sleeping half my day. Even when progress feels elusive, and the plasma exchanges are making me sick.  The only thing I can do is care for myself and move forward a day at a time.

Encouragingly, I am not alone.  Many people suffer in the same way I do and may never learn how to curb their own suffering.