Ankylosing Spondylitis restricts one’s ambitions very much and at times you feel so frustrated you could scream the place down, but, you have to fight on and bear your cross and not feel sorry for yourself and lead as normal a life as possible.

I can remember as a young boy seeing my Grandmother hobbling around the house with her Arthritic hips and legs and thinking to myself, please God, give me Arthritis like Grandma for one week and I will prove to her that I could walk a lot better than she could. It was not very long after these thoughts that my trouble started and I began to fully understand her awful problems.

I was then going to a very strict public-type school and we had a physical training teacher who vigorously put us through our paces every morning with his voice, to this day still ringing in my ears, ‘arms stretched’, ‘legs apart’, ‘together’, going faster and faster and it was impossible for me to keep up with the others. I was always being shouted at in front of all the others and was always having to come out to the front to have the gym slipper across my buttocks very hard indeed. He got more and more angry with me over this period and I got into such a bad state that I could not respond to his commands. He then got a cricket bat and beat me and I could not sit down for a couple of weeks. I have never forgotten it. I could not appeal to my parents as my father was a similar man to my P.T. teacher and would have given me another hiding and would have said I must have deserved it.

I can remember my father was constantly shouting at me because in our house we had a step up into the living room from the kitchen and I had great difficulty in getting up the step without pulling myself up by holding onto each side of the doorway and jambs and my father shouting at me not to do it and he said it was like my hips were tied in a bloody knot in the middle.

Only my late mother appeared to have any compassion towards my condition and I was taken to see the school doctor who sent me to see a specialist in Taunton and I must have only been ten or twelve years old at this time. This specialist came to the conclusion after a few X-rays that there was nothing wrong with me and I had developed a “lazy way of walking” and I must pull my socks up and walk properly and he sent a woman to my home to show me how to walk properly. I then saw him every few months and I was still with stiffness and pain steadily getting worse. He then gave me some heat treatment out the hospital.

When I was seventeen, I was working on a farm and running my own little small holding as well and was very happy, but in pain. My walking continued to get worse and I had great difficulty pulling my Wellingtons out of the mud as my legs had got so weak. Also, when I was driving the tractor I had to lift my foot with my hand from the footbrake pedal to the clutch.

The farmer said that he knew a doctor from his Cambridge University days who was now a specialist in these matters in a big London hospital and he would contact him and pay for me as he said he thought there must be something quite seriously affecting my hips and spine.

He asked me if I minded if he got the approval of my own G.P. before he arranged the examination in London, and I was delighted that at last a person was taking positive steps to help me.

He then came back in a couple of days and did not appear to be in a very good mood and he told me that he had been shown a letter by my G.P. from the Taunton specialist, saying that in his opinion I was nothing more than a ‘lead swinger’ and a sponger off the country and he advised him to sign me off the ‘sick list’ and get me back to work as soon as possible as there was nothing wrong with me.

I went to see this specialist in Taunton next time my appointment was due and I could hardly put one foot in front of the other and I was unable to walk without a stick. When I entered his consulting room he stood up and was ‘purple with rage’ and said I had no right to get around with a walking stick without his permission. I replied “I will never come to see you again” and the sister joined in and told me not to be so rude to the doctor and I walked out very upset.

I was told to leave my employment by my employer and was duly signed off the sick list by my own doctor. I stayed home for about two years and was kept by my mother with not a penny to help her and a father on a very low wage, and I was then threatened by the authorities because I did not have any stamps on my card. I then heard about a very good specialist in Bristol who had treated my Aunty and my mother telephoned my G.P. to see if he could arrange for me to see this new specialist but, he doubted if he could do anything for me and was a waste of time.

I saw the Bristol specialist at Bridgwater hospital and he was most concerned and asked to see my previous Taunton records and was told that all my records were lost when they moved the records department to Musgrove.

He then put me into Winford Hospital near Bristol for an operation to lengthen the tendons to try and straighten my pelvis, which was badly tilted. I came home and was never free from stiffness and pain and my walking got worse. Since being under this new specialist my G.P. had put me back on the sick certificate but it was very little money of less than two pounds a week due to no stamps on my National Insurance.

I was always being pressed by my G.P. to get back to work and my father spoke to the factory Personnel Officer and explained my position and it was out of the kindness of his heart, and the fact that my father was very highly thought of, that he agreed to see me.

He offered me a job as an Inspector and I can remember the sheer joy of getting my first wage packet after 3 years of £12.50. I was in a state of euphoria but, after three weeks and in pain, the factory started to spin around and I collapsed. The next I remember is being carried out into the First Aid room and the Nurse and my father talking, and I was saying how sorry I was to cause so much trouble and the fear of losing the job, as I knew in my heart that I would never come back to this well paid job.

They decided to send me home by taxi. The ten miles was a nightmare and I was in such terrible pain I pleaded with the driver to drive slower over the rough roads but he said he was in a hurry and had other jobs to do on his return. When I arrived home I was in a terrible state and my mother telephoned my G.P. to tell him about what had happened and he said he would call when he was next hear my home. I sat in a chair by the fire and I was hardly able to move a limb for pain and my mother bathed and dressed me. The doctor eventually came after seven days.

I then returned to see my Bristol specialist and he put me in a plaster jacket and I felt a little better with the support and stayed like this for a few months but had a lot of pain.

I returned and the specialist told me to get the plaster cut off and to go home. My brother drove me the ten miles home and I cried uncontrollably all the way home. I went back again in a few weeks and saw the specialist again. He examined me and looked pale and worried and said “My God, the boy has got severe Ankylosing Spondylitis”. This was the first time in my life I had heard the name of this condition.

I was told that I would have to go for deep X-ray in Bath and I shall never forget the journey by bus and train from Taunton to Bath. I was then also given the hot springs treatment which did me a lot of good along with the kindness of the staff.

I then carried on until I was 25 years old (1960) and every year for the next twenty years I had treatment a couple of weeks every year and was in full employment.

In the early seventies, the Manor Hospital said that they could do no more for me and the Royal Hospital for Rheumatic Diseases would be more suitable to continue my treatment. I asked the head man at the hot treatment at the Roman Baths and got Mr Cosh to take me over as a patient.

I joined in on this group treatment but I never liked it for many reasons but, I realise that this is one of the few hospitals that take any interest in our condition and I am most grateful. However, I find the lack of understanding is common, and you are often bullied or shamed in front of the others if you fail to come up to expectations. It often reminds me of my old P.T. teacher from my school days. Also young house doctors or Physio’s have read a lot of books etc. on A.S. and fail to understand the person and the emotional and physical problems of people like myself who have had it for over forty years and had the wrong treatment owing to lack of knowledge in those early days of the condition. The understanding of A.S. these days is much better and I hope any new young sufferers will never have to go through what I have experienced.

I am so happy that I am still able to walk with a stick and not confined to a wheelchair.

My ambitions and future plans are that I can feel fit enough next year to build a small house on a bit of land I own. Also, I pray to God that my son and daughter, who are only two and four years old, that I see them safely reach maturity and possibly married, and to feel they are proud of me that I built the house for them, to always feel it is home and leave a little of my character in the walls when I am no more than a memory.

I have written at some considerable length as I feel you should know about my feelings which may go towards a better understanding of our problems to help others in the future.

Clive Grenville - 1935-2007

Date: 1985