A Man is Pain and His Music

Last updated: August 2021

Hi, as a boy I used to carry coal as we owned the local coal business. I was into my sports rugby wrestling and many more . In my late teens I developed severe back pain lower back and neck, I put this down to the activities and always on the go. I had a good career ear in wrestling, but by my late 20s I knew something wasn't right.

I went to the local hospital Bedford NHS where MRI scans were taken and blood tests for quite some years I was told it was excessive where and tear on my spine into my thirties still complaining of excessive fatigue I was still told wear and tear ie GD generative, I was very suspicious of this as at this time I'm my elder brother was suffering severe AS .

I know jump forward to my middle 50s after years of unnecessary drug taking (medication I mean), I find myself in Wolverhampton where I've lived for 10 years excruciating pain stiffness and fatigue to the point of I've only just got up up.my self going within in 4 hours I am wanting to go back to sleep and rest. I was referred to rheumatology at NHS New cross Wolverhampton. There I went through the usual tests scans and blood tests, I was told by Dr Beecham there is no doubt at all all that I have ankylosing spondylitis.

The fatigue is phenomenal that I will not give in, I am a single man I keep a very clean and tidy flat things I used to do in 10 minutes now take me an hour or more, but I refuse to have any help. In 2015 I was diagnosed with kidney cancer I had partial left kidney removed was told I will be with them up to 9 days, after my cancer operation, they said I would wake up in intensive care and went all SATs were fine I've been transferred to a mainstream ward. I had my op on a Friday woke up in intensive care on the Saturday they said I was being transferred to mainstream ward I just charge myself went and done my shopping within hours of my cancer op. So not only was I dealing with AS.

I was dealing with the aftermath of my kidney cancer. I have always been strong and never give in having a life from a young age ,always , active and contact sports. I am now 59 years young when anyone asks me how are you you I will always say I'm great how about you but, life is hard but some days you would not think there was anything wrong with me I still have a keen eye for the ladies hahaha but if only they seen what goes on behind closed doors sometimes with the pain and fatigue. I still go on stage and sing my songs always make people laugh no matter how I'm feeling.

My strong words to everyone is do not give in , I take oramorph gabapentin and and trying a new new medication whereby I use a pen to inject myself. There is a mental barrier I cross every day as I see myself different to other people and indeed I think that is why I cannot find a partner to share a loving happy life with , at the back of my mind it is nearly not me you cannot share a life where you put on someone a condition such as ours. I wish everyone 1-piece love and happiness as we endeavour to conquer this disease/condition.

PS music is a big part of my life if and when in chronic pain I get a song in my head and love in my heart that seems to knock the pain into next week. Yours with the kindest regards Ian. My friends call me big e xx

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Do you notice worsening flares in colder weather?