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
Do you notice worsening flares in colder weather?