I must start by saying I haven't found it easy to sit and right my story. Putting the last four years down on paper proved to be difficult. For one I didn't want to physically write it ! Frustrated because I haven't quite mastered using the computer, much to the amusement of my 14 year old daughter Grace, whose assistance is unending! Secondly because of the emotional journey recalling the last four years have been.
In 1999 I wasn't ill, I was then age 39. I have three children and I had a part-time job in a local pub and not a bad social life. I noticed after pulling pints etc. at the end of my shift I felt aches and would massage my hands. I didn't like squatting to clean the chiller cabinet glass doors because I'd struggle to stand up. After work I'd go home and sleep. First signs something was wrong, was around June time. Two months later I couldn't walk to work, I managed to walk to the bottom of my stairs to use the telephone to get assistance. Eventually I was hospitalised, diagnosed with Rheumatoid Arthritis and prescribed medication.
Life was very different, I was never well enough to return to work. The medication lessoned the swelling in my joints and the steroids and pain killers eased the pain but I was weak and tired a lot of the time. My consultant at the Rheumatology clinic at St Georges Hospital and I were enthusiastic about a new drug I was about to try to relieve my symptoms. I remember when my mum collected my prescription 'it could be the cure for your Arthritis' mum enthused.
I was coming to terms with the prospect of having to take medication indefinitely and the restrictions the arthritis imposed. Slowly I got back to a 'normal' routine. Getting up in the morning to see my daughter of to school was a big deal to me and I was determined to do it. Having a meal prepared for dinner wasn't an impossibility! I just had to get a little assistance now and then with tin openers and lifting pans! Everything took twice as long to do, but I was at least able to wash and dress myself with a little help. Driving my car was a different matter; I neither had the strength nor the confidence to do it. To this day I haven't sat behind the wheel of a car; I quite like being driven around! The months past and I hoped things would improve and I would start to feel better.
Well I didn't feel much better; I began to feel more pain in more of my joints more of the time. I spent all day and all night in the front room on my settee. That way I did not have to move and I could sleep in an almost sitting position, which would help to ease what I thought, was chronic indigestion. I had no appetite but I did eat cereal three times a day when taking the medication. I was loosing weight, my hair was thinning and I developed mouth ulcers and rashes on my chest and back. I was admitted to St Georges Hospital.
Ever since my first experience of back pain (standing at a UB40 concert in Finsbury park) I had been under the watchful eye of my G P. It was her original referral that first lead me to St Georges Hospital Rheumatology Department. I was relieved to be admitted again because I was feeling so dreadful. It was a relief to hospital although I had to endure various tests. I weighed less than eight stone and was still loosing weight, I was weighed daily. The rash that developed on my back was of particular interest and it was noted that the rash on my chest was not going away. I had a skin biopsy, a kidney biopsy and my bone marrow was tested. I underwent brain and body scans.
Throughout my stay in Hospital I had great support and regular visits from my family and friends. I got on well with the nurses and got used to the daily routine of hospital life. At the request of my consultant I made a brief appearance at a seminar where student nurses and doctors could ask me about my symptoms and see my condition. I found this interesting and it was to be the start of my learning a lot about a disease of the immune
system as I was diagnosed with Systemic Lupus Erythematosis. Apparently it is not unusual for an individual with Rheumatoid Arthritis to develop this. I was very happy to be discharged from hospital soon after.
Throughout my illness I have been prescribed Steroids, non steroid anti- inflammatory drugs, Metyhotraxate, rofecoxib and azathioprine. Taking into consideration the various side effects ( when taking azathiopine you have to submit monthly blood tests), I was anxious to get off steroids and was fortunate enough to be compatible with an anti-malaria drug which my consultant prescribed.
I take my medication regularly! My well being depends on it. I take my medication seriously! I know what I am taking and why it has been prescribed. I live with Lupus, and all that it brings, the medication makes it possible for me to achieve this. It is an ongoing process. Incurable at present but with more awareness perhaps not misunderstood. I am a regular at the Rheumatology Dept, St. George's I will be eternally grateful to Dr Axford and his team for my prompt diagnosis and treatment.
Now I have a near normal daily routine and I know my limitations. I take good care of myself and avoid the sun always. As I am fatigued most of the time I am unable to work. At present I am not in a relationship and have not been since 1999. It would take a very special person to put up with me, as I am forever changing plans because I maybe on a 'flare up' and have to take to my bed at any given time. I have a home help whose assistance I greatly value. She helps me keep on top of daily chores and does the ironing for me. Life is good.