Prepare to suffer

The title of this post is pointing out the obvious. Indeed we are going to suffer, we have CPS. We face a life of chronic pain which can be pretty depressing in itself - but we must also live a life. We are parents, husbands, wives, grandparents, sons & daughters. Life must go on despite the pain.

It can be difficult to comprehend a permanent pain condition. Especially if you are newly diagnosed. Some of us are lucky enough to be able to function quite well, whereas others have added conditions that can stop them from doing the most simple activities. We are a mixed bag of sufferers, sharing a common problem.

I was out of work for 9 months at the beginning of my pain journey. I couldn’t even walk my dog without my back flaring up. My family suffered financially and emotionally and I went in on myself. When I began overcoming my depression - and when the medications started to take effect, I gently pushed myself to do thing's that would improve my situation and positively affect my mental health.

Before the Covid-19 lockdown I started hydrotherapy at my local pool. It also has a steam room and a sauna so I switched between the three in an hour and a half session. Being weightless in the pool felt amazing. I was also able to swim a few lengths so I also managed exercise for the first time in a long time.

With medications and meditation I got to the point that I could walk without a stick. It was a slow process that I had to build up too. Another part of my life is music. Before CPS I sang for a local rock band, singing for 3 hours at a time each gig. It burns up a lot of energy as I use my whole body and various muscles to get through a set. After the accident, quite a few gigs got cancelled but the band kept me on. Music and the band are the only social life I have outside of the house. I was determined to get back gigging.

I eased myself back into it. Although it took me days to recover after a performance I felt it was worth the suffering. And preparing to suffer has now become a part of my life. I have to get through the things in life that contribute to my wellbeing, and contribute to my family such as work. I love singing, it has been a part of my life since being in my first band as a thirteen-year-old.

I rarely talk about my pain anymore. Only here and on my blog - tripletdad.blog. but I suffer nonetheless. Walking any distance is painful but I need to be on my feet during the day. Playing a gig with the band creates adrenaline that pushes me through a set but as soon as the gigs over my head begins flaring from the noise levels and my back gets stiff. Some things are worth the pain. And until a time I can no longer perform I will keep rocking, because life must go on.

Whether it's gardening, camping, painting, live music or something as simple as cooking; it is important that we have some kind of outlet, even though it may cause our pain to flare. As long as we are prepared for the consequences we can perform certain tasks and be ready for the spike in pain levels. The way I see it is that whatever I do physically, I'm probably going to suffer for it so why stop the things I enjoy. I am learning to live beside the monster. And suffering is just a card I have been dealt.

Questions or comments? Join the CPS patient conversation at our closed Facebook group or email us at info@cps.foundation