1990 - 2000
Well, I was thrilled to reach my 30th Birthday in 1993 and still working, The Prof at Hope Hospital Manchester, was also pleased with the remarkable slow progression of the disease. I was told that sometimes these autoimmune disorders can burn out after 20 years, but the patient is left with what the disease has caused over that time. This gave me comfort and hope. When one believes that our life could be cut short at any time, the consequence of damage to the body is irrelevant. Even the prospect of losing fingers and toes was of no great concern in comparison to mortality.
Having access to the student Doctors quarters, I looked up my condition. It was here that I read about CREST (calcinosis; Raynaud phenomenon; oesophageal dismotility and telangiectasia) Due to the rareness of these diseases, there was not much information in the public domain in those days, certainly no internet, and Doctors were not as informative as they are now. I had only previously seen this in my notes and I was horrified, I had already began to develop the telangiectasia but when I saw photos of it fully developed, the prospect of it in the future was terrifying. I could not imagine my face looking like those in the photos, in an age where society is obsessed with beauty and physical appearance. Little did I know what was to come! The pain inside is unimaginable when we watch the visual changes appear almost overnight and the horrendous feeling of fear at not being in control to stop it.
I never told any of my colleagues about my illness, I didn't feel that it was necessary and I wanted to prove to myself that I had the ability to work for as long as I possibly could and without sympathy. My positive mental attitude saw me through many tough situations that arose, it really was mind over matter. Dealing with chronic illness was never easy, everything was a battle. This caused me to be very impatient with people throwing a sick day for a minor cough or cold, if they really knew about illness and what it was like to suffer pain each day, they would work through it too. Most people with good health don't realise how lucky they are, it's taken too much for granted.
It wasn't until the mid 90's that I began to suffer with my feet, even worse during the winters. For a few years I saw the works chiropodist who came out to see me privately at home. I could have had this FOC as part of my job but I was too embarrassed to let anyone know that I was suffering with problems. When the Prof saw how badly affected my feet were becoming, he made provision for me to be seen at the podiatry clinic in Manchester. I began to have regular monthly podiatry care to control ulcers and treatment to calcinosis. At its worst, I had weekly appointments and I was in danger of losing one toe which had an infected ulcer which wouldn't heal. This is all part of the problems associated with Systemic Sclerosis, the healing process takes much longer than in healthy people. I also began to develop fat/muscle atrophy and this was the beginning of what would be years of bandaged feet and incredible pain.
After happily working within the NHS for a few years, I decided to go to work in the private sector , a big leap in middle management, within a subsidiary group of a multi-national blue chip company. I had worked so hard to get to this position and within six months I was rewarded with a company car and mobile phone, which in those days was the size of a small house brick! It was these years that I began to regret later on, my children were growing up and I was always at work for long hours, due to being salary paid, I never knew when I was going home. It was extremely difficult to juggle everything around, children; dogs; housework; the shared responsibility of my Mother who hadn't coped very well since losing my dad in 1982, and work as well, I was exhausted. My job entailed a great deal of walking which I could manage when my feet were bandaged, but high heals soon became a thing of the past, this was something that I had trouble adapting to, I had always been smartly dressed in a suit for work with enough stilettos to set up shop myself, flat shoes just didn't cut it for me!
A huge setback came in 1992 when I was rushed in to hospital, this time with viral meningitis. Whilst this is the less virulent form of meningitis, it was a dangerous time for me and due to my already suppressed immune system, I was unable to fight it. This was the first time that I had been off work sick due to my illness, I was gutted! What a coincidence that my Dr Tubbs who was then head of the IDU (infectious diseases unit) at another hospital and was now in charge of my care. I will never forget the head pain and the inability to open my eyes. I knew some of the ward staff there who I had previously worked with, when they heard my name on admission, they came in to say hello but I could not see or speak to them. I was in isolation and it was a slow and painful recovery. The only lasting effect of this was slight loss of hearing, I was very lucky. Three weeks later when I was much better, the Doctor asked me for a huge favour, he wanted to photograph varius parts of my body which by now had more visible signs of the progressed disease. Telangiactasia, calcinosis and moderate muscle loss had began to give me problems, I was also losing flesh from my feet which were very sore when the disease was active. The photos would help Dr Tubbs build up slides for trainee junior Doctors, to enable them to recognise symptoms in the future. I was more than happy to return the favour, It was definitely pay back time.
Once fully recovered, I was back to work against all advice, I was told that any stress could cause bouts of progression which in turn would enable the illness to become more active and for longer periods. I had learned to live with the pain but the tiredness was very difficult to cope with, my lack of sleep didn't help. I had considered myself a reasonably active person, I was not going to let this disease take over my life, It was slowing me down but I was determined to work until I was forty years old. I didn't quite meet my target but I wasn't far off.
I am from a background of hard workers, I was brought up to believe that if we wanted anything from life, we had to work for it. My late Father had a strong working ethos, as did my Grandfather who worked in some of the mines around Stoke-on-Trent. I am happy to have passed this on to my own children who have always worked very hard. I have no doubt that had I have not suffered with illness, I would still be working today (2015). I loved my work, it enabled me to provide a better life for my children, they appreciated me and what I was doing for them, but in return, they had their own jobs to do around the house. I am a firm believer that children should help out when both parents are working full time, they had pocket money from an early age, it gave them a sense of responsibility and taught them that they needed to work if they wanted good things in life.
With my work to focus on, this also enabled me to put health problems to one side for most of the time, I never really accepted what was slowly and cruely happening to me. I have always had the ablility to compartmentalise issues going on and in many cases, totally block out reality, which has helped with my coping mechanism over the years.
I began to develop more calcinosis cutis ( or cutaneous calcification) due to prolonged steroid use. Some were removed from various parts of my body but this was not possible on the feet due to the developing scar tissue. They are very painful, especially underneath the feet where the calcium has attatched to the bone. I have always described this as like walking on broken glass, hence why I always state that no one would wish to walk in my shoes! Almost 20 years later, a DWP officer asked me" why did I walk on the grass" this is the reason why, but they omitted that in the notes they would distribute to the media.
At the Podiatry clinic in Manchester, I was fitted with specially made orthotic insoles to give some cushioning for where the flesh had been eaten away by the disease. It seemed to move around my body like an entity, until it found an area to destroy, my feet were being eaten away so badly that they actually shrank. There is so much going on over a period of time that I sometimes wonderd if it was in my imagination? How can anyone have shrunken feet? But I did, it was very real and this has continued to progress each year since 1993 to the point where there is now only skin and bone, no muscle or subcutaneous fat to cushion them.
The other area of massive change was on my face, I could see and feel this very slow progression causing some distinctive and uncomfortable visual changes. Collagen and elastin fibres allow healthy skin to be supple and flexible but a build up of those fibres causes the skin to be tough and tight. Another description is that the blood no longer feeds the skin. The word itself states exactly what it is Sclera (scaring) Derma (skin) but it goes much deeper than just the skin. As a proud person, I always presented myself well (I still try to) Things so personal and frightening were happening to me that I was too afraid to ask anyone if they could see what I was seeing and feeling. Years earlier, my mouth had begun to feel abnormally tight and it was noticable. The progress of this was fast and my jaw began to change shape, my nose became a victim to fat atrophy and I was worried that if I broke the skin, I would expose bone. The telangiactasia (burst blood vesels) were quite prominent on my face; I felt ugly; my confidence was low; for obvious reasons, I didn't want people to see this. What the hell was I going to look like later on? Did I really want to survive this? The muscle pain was increasing in my arms and legs and I knew they were getting weaker. Muscle biopsies were taken to see if this was caused by the disease or the steroids, it was both. I was then put on quinine, a drug usually used in the treatment for malaria but which had been found to be effective in patients with Multiple Sclerosis who suffer cramps. It did offer some relief and I stayed on this for the following ten years.
I had lasor treatment on my face to remove some telangiactasia, but they warned me that it would return in a few years and it did. After experiencing what I can only describe as like having someone put cigarette burns all over my face and looking black and blue with bruises, there was no way I would put myself through that again. When they did return, I was more than happy to see a Consultant Cosmetologist, who would teach me how to cover them up with camouflage cream on prescription and care for the ever increasing scar tissue, caused from the over production of collagen. I was told that I would never have wrinkles (this was said again in October 2015 after seeing a maxillofacial surgeon) Camouflage soon became my desert island must have, I could not go anywhere without it, even the post man would never see my bare face, it was horrendous enough to give someone a fright. Very few people have ever seen me without this wonder product, it's always been the first thing I do every day as I cannot bear to see it myself so I won't allow others to see it. Due to the increase of scar tissue on my face, the skin became alabaster white, made worse by the fact that it doesn't tan in the sun and I developed vitiligo as well. What would I have done but for camouflage cream?
The only satisfying thing for me at this point, was that so far, my vital internal organs had been spared the fibrosis, I had yearly ECG, heart scan and lung function tests along with regular bone density tests to check for osteoporosis This is a great risk for patients who experience calcinosis. I suffered with IBS as my gut was also affected, tests had shown that there was an over production of bacteria but no scaring. My oesophagus problems continued but this seemed to be stable for a while although with swallowing difficulties, I still had to be careful. This by no means meant that my condition had improved, quite the contrary, it was progressing somewhere all the time.
I think around this time, it would be fair say that I went slightly off the rails, hardly surprising owing to the circumstances, I think my whole family went through some years of suffering along with me. People with chronic illness are not easy to live with, it's so difficult to cope with daily living without the added stress of feeling ill and tired all the time (TATT'S). My children would sometimes come home from school, find me asleep on the chair after coming home from work and cover me up with their baby blanket, it happened often. I would wake refreshed, cook tea and off out to work again until 10.30pm. I never got used to the 5am starts and hated the late nights. I knew that I couldn't keep this up for much longer, I was struggling big time! The continuous strain on my whole body was overbearing.
As the years rolled on, the progressing condition began to affect many aspects of my life, my twenty year marriage was coming to an end. The stress of this and doing my best to help my children through this time was overwhelming. Depression loomed, hopes and dreams diminished, lifestyle changes were in order and my focus was on the needs of my children as they adapted to this huge change in their lives. Splitting from a life partner is never easy, even when it is amicable, it was so important that the turbulence of the split had little phycological affects on my children. They both took it quite badly and we went on some rollercoaster rides for a few years but although I left to buy another home, It was a few years later before I was divorced.
Although the process had begun amicably, I later found out that once I had signed away my rights to receive my rightful share of the marital home and other financial benefits, within months my ex husband had moved his secret partner in to our home. After more than twenty years, I never thought him capable of cheating me out of my entitlement, but he was and he deliberately did so. We never spoke again and I would never forgive him for his calculated actions, but I have always felt that morally, I still have a share in my former home. It proves that sometimes it can be the closest people who we would least expect, who hurt us the most. They also have to live with their actions.
As a new decade was approaching, I began to realise that my career was going to be cut short. The impact of this realisation was immense, there were mixed feelings of resentment at ending something that I had loved; frustration that it was beating me, why was this still in progression after all the battling to stop it? I had worked all those years when my children were young and now they were old enough to look after themselves, I needed to work to fill that void in my life. I was now supporting myself so I needed my salary more than ever, the financial implication was another worry. I had never been financially driven, my purpose was my self worth and to prove to the medical profession that they were wrong. I admit to being stubborn and doing the opposite to what I am told. I am motivated by sheer determination, not much gets in my way when I have this adrenal boost to succeed in something that I believe is within my grasp. It was all out of my control, there was still no miracle drug, the mystery behind the mechanism was little understood, I could not stop this in it's tracks so it was time to listen to my body for the first time in many years and to slow down.
I had to adjust my aspirations, lifestyle and employment, the functional limitations imposed by the disease has a direct cerebral impact on mood. Living daily with a chronic degenerative condition takes it toll as does prolonged drug use. The physical consequence of this alone merits medical attention. The emotional dimensions of these conditions are in general, overlooked and unsupported and the continuous hospital admissions, new diagnosis, appointments and changed medication become a burden to bear alone. It was very isolating!