My pain and why not everyone understands

I have never written much about pain in the past and until now I have not thought about why. I am not really sure why “I understand” but here goes… 

Scott Sibbald

Firstly I think that I am honest with myself about my pain. That’s a good start. A long while ago I met someone in hospital and he was in the same hospital as I was, under the same consultant, the same age group, the same medical history, in for the same procedure and all he kept saying was “nobody understands me” or “nobody understands the pain I am in”. Now at first I was supportive, tried to encourage him as the procedure we were getting was was going to give us some relief, great as even a small decrease in pain would have been welcome. I thought that a pain free result unrealistic but that there must be hope. Surely the consultant did understand him, what if the consultant did not understand me? What if I do not understand myself?

The consultant must understand that man, as if not he would not have been in hospital for the new ground breaking surgery? So why did he feel that nobody understands him, well let’s see, yes he is in constant general pain with random unpredictable pain every minute every hour every day, he can’t work so lost his job, he has no money, his relationship broke down, he does not go out socialising, he has to take a lot of medications in his daily prescription list, he suffers significant side effects from taking the medication, he gets new additional side effects from the medication supplied to counter the original medication, the medication helps the pain but does not resolve the pain increased to the pointless point of being almost sedated,so surely if it does not resolve the pain then why prescribe it? 

So did I really understand him in the hospital five years ago? Yes. Do I still understand him? Yes. Is that person me? No, well maybe a little. Will come back to that point but when I feel I am having a bit of a wobble I think of this conversation of understanding. I use it as a warning to myself to question what I am thinking and what I am feeling. Is my feeling clear enough to function. Do I go back to primal instinct fight or flight? Can I relax and handle what is going on in my body just a small decrease can make all the difference. 

Pain is now a part of me, part of life, part of my life, it won’t beat me but it has changed me. Changed for the better and for the worse, changed but not broken but it’s a large jigsaw puzzle and it’s easily broken. 

All the coping methods suggest reducing some, any or all any of following areas that can cause a significant increase in pain; Stress, relationships, family, illness, money or support structures or lack of, a few local doctors(hospitals have been brilliant) can seriously impact pain. Yes that would affect someone in normal health and realistically I don’t want to live in a cell, my pain is now a life sentence so I know from time to time it’s going to hurt. 

Life rebooted when I met Tanya then of course Tanya’s daughter Anna and son Ritchie. They welcomed me with open arms they love me as I am, I did not them before I got sick in 2008. Their love keeps me together mentally and  Tanya and I Married in January 2016. In  March Anna and Ritchie gained a little brother in Alexander. He loves his brother and sister so much already it is clear!

So with all the challenges that will continue to accumulate with life I know that Tanya, Anna, Richie,  Alexander and also my Mum and Dad will make those hard days better.

It would be foolish and also dangerous to attempt tho say that I have all the answers. That I am not at risk of loosing the battle, loosing confidence that other people not understanding. I don’t fool myself and sometimes I don’t see myself in the mirror sometimes I do.

I miss working but it was making me even more sick. The answer was something miles away from what My wildest dreams could have created but I found Art in painting with Oil and Watercolour paint.

Art is my therapy. My wife and family are of course part of that but Art makes me leave the pain just for even a short time. That’s selfish but why not have a couple of hours each day to paint, dream, create and deviate from the reality of constant pain, weakness and missing so many values that I grew up in up with from home to school to the office.

It’s different now it’s all different. My body and mind changed altered but I am still me. I can love my wife, I can care for our children, I can love my parents. I am still me and I don’t need to repeat to my family and more critically asking myself if “nobody understands the pain I am in?”.

I know my family understand and they keep me going. For me to focus on that person asking everyone if they understand is not where I want to be. There are days or weeks where pain does take control. This year has been a bit of a challenge since one of the big post surgery periods a few years back, it’s not that asking if anyone understands it’s about knowing when it the pain is above the normal. This month it has been.

I try and try to be normal but it’s not working. So I will keep painting working on my own art therapy. If this is working or not I don’t know but when pain takes over its like having a quarter of my body getting a toothache removed with no medication to remove the pain. Unlike the dentist it repeats and repeats day after day, hour after hour and it’s been like that since January 2008! That’s a quarter of my life..

So I hope to write more about my pain and my painting and I hope that if your suffering the similar challenges you will also know I will never ask you if you understand the pain I am in?

For spouse or family members I might ask that particular question as I feel that family need support also it is there but from charitable organizations not part of hospital support. 

How to explain to your family and friends how you cope every day- every day not just when you are sick, have tooth ache or even a hangover this is every day.

Spouse feel our pain and suffer their own pain as they can’t do anything to take it way.

The Family in Kiev 2018

Maybe one day medicine will take the pain away until then we need to stick together.

Should you want leave any comments then please do either in comments or direct via my contact details.

Until then and in 2019 I wish you a Happy New Year and remember I do understand… 

Scott Sibbald Dec 2018

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