Living with lupus: ‘In the mirror I saw an old woman and it took a moment to realise that this was me’

For years I had been allergic to the sun, and my face and toes flaring up in response to it; I also suffered from increasing fatigue and breathlessness. Various tests with specialists resulted only in being told that I had emphysema.

Then, on the June bank holiday in 2008 one of my grandchildren stood on an ulcerated toe and tore the skin off. On treating it, my GP suggested some blood tests as I told her my various symptoms. The results showed positive for the rheumatoid factor. Okay, I thought, so I might get arthritis but surely that is to be expected at my age. At best it’s not cancer or one of the better known debilitating diseases.

However, the consultant gave me the decisive diagnosis. I had lupus, or LSE, a disease I had never heard of. The name comes from the rash on the forehead and upper cheeks, often in the form of a wolf’s face. He told me that it was incurable and could attack any part of my body as my immune system didn’t recognise the difference between foreign bodies and my organs. He also told me that fatigue was a condition.

I wasn’t too upset as I thought at least there were drugs to control it. He put me on medication and that summer I tried to live and work as before. But I found this more and more impossible. Thinking this was all just due to a prolonged bout of bad asthma, I fought to overcome the fatigue until I could hardly walk. Swimming, which I love, was out of the question. And so summer turned to autumn and I got gradually worse.

In October, on my way to Dublin by train, I met a former student of mine, an Olympic rower who I’ll call R. On arrival in Dublin I found that I could hardly stand up straight. As I bent over, wheezing, R called the station man with the carrier and the two of us sat up, laughing at the thought of anyone seeing us; one cripple and one Olympic athlete. I rang my Galway consultant, who told me to get to him as soon as possible. He rushed me to hospital in a wheelchair, did some tests and got a colleague to put in a filter immediately.

Rare condition

He had diagnosed clots on my lungs causing pulmonary hypertension, a rare condition –previously misdiagnosed as emphysema – due to a deep vein thrombosis caused by the lupus. This was causing my breathlessness. I was very ill; I grew more and more bloated and felt like a beached whale. As the days went by, I was assisted in and out of bed. There was the humiliation of having to be helped to shower while seated as I could not yet stand. Eventually the fluid began to flow away and I could see my legs again, still swollen but not quite elephantine. Then came the Zimmer frame. As I passed a mirror I saw an old woman, with a big bloated face and white hair, who was bent over and shuffling, and it took me a moment to realise that this was me.

One evening the heart specialist arrived in my room. A tall man, rather lugubrious, he sat on the window seat quite removed from me and told me that as my heart was enlarged due to the pressure on my lungs, it was permanently damaged from pulmonary hypertension. It had to work much harder to pump the blood through. In fact, he continued, it was likely to get worse. I would not be able to live on my own, would be very confined in what I could do, and all in all the outlook was not good. A limited lifestyle and a limited time were in store.

He looked so sad as he gave me the news that I felt sorry for him and said, “Look, doctor, don’t worry, I’ll work around it,” and started to laugh. He was quite taken aback but I continued to reassure him, though the news did dishearten me.

Dependency

After that, for the first time, I cried. I wept for my lost youth, the work I knew I would no longer be able to do, the travel I could no longer undertake and a sense of dependency that I was never used to. But I was determined to get as well as I could and was discharged on two crutches and oxygen to be taken every night. True, I had lost my nerve to drive my car but day by day I took to my doddle and managed to go from crutches to walking stick and though I could not do a hill – and still can’t – I was on my feet and after some time I moved home.

No longer able to go upstairs, I have put in a bedroom, a shower and a toilet downstairs and, although my energy levels never recovered and I suffer bad bouts that land me in hospital regularly, I consider myself very lucky and am happy to be where I am. Not only that, but also to be who I am. I do not only look back, I look forward and when the fatigue hits and the pains become intense, as they do, and never knowing where they will hit next, I use the mantra of my friend: “This too shall pass,” and it does.

Over the years my hair has fallen out, I got cataracts and my teeth have fallen out. I have developed arthritis and suffer from bouts of Reynaud’s disease (freezing hands and feet). Frustrated? Yes. Angry? Sometimes, because if it had been diagnosed in time the lupus might not have affected my lungs and my heart. I continued to do all that is possible including fulfilling a lifelong dream of going to the Arctic, which I did in December with my two daughters; it was a gift from my children. Coming off the ship I was in a wheelchair and in January I ended up in hospital with an infection.

This year, things have gone downhill. Infection after infection have landed me in hospital three times, finally with pneumonia and with the worst news. I would now have to be on oxygen 24 hours, so am at the end of a lead all day long. It’s a question of this far and no farther. I have tanks of oxygen – I call them my rockets – to give me about two and a half hours if I go out, but having to pull it behind me means short walks with breaks every five minutes or so. In fact I need someone with me if I am to get any proper exercise. My garden, which I love, is a mess and I so regret not being able to work in it.

But worst of all is that throughout last year’s beautiful summer I got not one swim and my lifestyle is very confined. Going out at all means arranging everything in advance, putting the tanks in the car to make sure not to run out of oxygen, using a nebuliser four to six times a day, and not being able to visit anyone overnight. One daughter with whom I always stayed in Dublin has no downstairs toilet and so I can no longer stay there as stairs are no longer doable. I also have had to learn to ask people to do things for me, which I find very hard as I was so independent previously.

Review my life

Many times over the years when seriously ill I have had to review my life. I think, well, if there is a god or a higher spirit I hope I have done enough good to merit an afterlife in a good place, though the idea of sitting looking at the “Real Presence” strikes me as very boring: this being what I was taught heaven would be like. I also realise that I have broken all the commandments – though I never killed anyone and I did honour my mother – and asked for forgiveness.

On the other hand, if there is nothing, that is all right too. I think how lucky I am, I have never had to send my sons to war, no one is going to knock at the door and take me away in the night, none of my children has committed a crime; in fact they were kind, hardworking, and generous human beings. I don’t live in a war zone and have never starved. All in all, I have had a blessed life with its sadness and happiness, its problems, difficulties and joys.

My energy levels drop regularly and I have to spend a lot of time in bed and sometimes this makes me feel like a waste of space. Then I have to get blood transfusions; I call them my vampire fixes.

Do I get depressed? Rarely, because I concentrate on what I can do and not on what I can't. For a sense of humour and of proportion are what keep me going, as well as reading books such as Eckhart Tolle's Stillness Speaks, which is a series of contemplations on the profound wisdom of living in the "now". His book has taught me to accept my disabilities rather than to be angry or to cry "Why me?". He writes: "Chronic pain is one of the harshest teachers you can have. 'Resistance is futile' is its teaching."

I have been told that my continuous “resurrections”, as we call them, are due to my sense of humour, positive attitude and my friends and family, who are always there for me. I don’t disagree.

Mary Troy is a former teacher. She has contributed to The Daughterhood, which is edited by her daughter Natasha Fennell, and by Róisín Ingle