17 Jun 2016

Asthma. A life lived with little breath.

About four weeks ago I was asked by my doctor to keep an ‘asthma diary.’ He was, justifiably I dare say, concerned at the amount of prednisolone (oral cortizone) I had been taking.  I have suffered (and I use that word meaningfully) with asthma all my life, from all accounts since my first and second years of life when I got wheezy colds that wouldn’t go away. I have therefore been advised several times by doctors in three countries, to ‘keep an asthma diary.’ The first time it seemed like a good idea and I kept one religiously. I learned little from it except that there is no single trigger for my asthma. From childhood the hay-fever season definitely makes things worse, but so can autumn, that season of mists and mellow fruitfulness, and funghi and decaying leaves. Winter with its sharp cold mornings, has always sent my bronchioles into retreat like shy sea anemones.

 Thinking back to my earliest years it wasn’t surprising that I missed a lot of schooling in all seasons. Evenings by a roaring coal fire, heat at ones front and cold at ones back, nights in freezing bedrooms with hot water bottles causing chilblains (thank the powers that be - technology in this case - for central heating). If my parents tried to make things better it was with an oil stove alight in my tiny room. The smell of oil burning, or even calor gas, still makes me wheezy. My mother knitted me pretty jumpers in mohair; now I know I’m allergic to wool but at the time no connection was made (certainly not by me) between the red-faced girl puffing desperately in the sweet, pastel coloured hand-made pullover. I hated the woollen socks my grandmother knitted to keep me warm but at least they didn’t make me struggle to breathe. Then there were the feather pillows - I didn’t rumble that one till years later. No wonder I woke so often in the night unable to draw breath.

We had a cat and dog. I found in later years that I was able to become immune to the resident pets after a while. Pushing my face into the fur of a cat didn’t make my eyes go red and swell as they did my son’s eyes. I rode, when I could con someone into lending me a pony, and disregarded the wheezing, but grooming wasn’t the enjoyable occupation it should have been. 

We lived in a cottage reputed to have been built in Tudor times. It wasn’t at all romantic. There was a beaten earth floor in the living room and a weed grew through the floor boards. We were so fascinated by this that we watched it grow, extending spookily pale and etiolated into the dim light of our living room to coil itself round the leg of the television table (TV bought for the Coronation of course.) The walls were wattle and daub. We were able to study them close up after a storm ripped away the plaster on the wall outside my bedroom. I was able to look at the stars by night through gobs of mud (dung?) and wisps of straw.

I got bronchial pneumonia, almost died, and the doctor advised my parents to have the floor concreted over. No more weed. Rather sad really. I was the only one of my friends (few enough since I was off school so much) to have a plant in the living room that wasn’t an aspidistra.

I add all these details to dumfound the researchers blaming central heating and hygiene for asthma. It was much worse for me before the advent of warm toes and the death of chilblains. Of course there were researchers in my day. They blamed asthma on the newly named psychosomatic syndrome.  Well, that I can’t disprove, in fact some of my life I have seen that it might well be true. What they didn’t get right was the ability of the mind to switch off this unfortunate side effect of emotional weakness - because that’s what it was seen as by the general public. Asthma was an annoyance (to the non-sufferers) thought up by someone who wanted to swing the lead, get out of runs at school, get out of just about everything. Asthmatics were seen as overweight pains in the butt and a joke. Let it be known - I was never overweight. I loved food and like any normal child I loved certain sorts of exercise, riding my bike far beyond the routes my mother would have sanctioned, riding any pony that I was allowed, whip and top, ball and hoop in the playground, tag (sticky toffee in our part of the world) blackberrying that often involved long walks, coiling myself into what look very much like yoga asanas in retrospect. I walked a couple of miles to school every morning and back in the afternoon. What I didn’t like was that which brought on the wheeze - running for instance. Or things I was bad at like ball games. I had no co-ordination but can’t blame that on the asthma. There was no municipal swimming pool. We were so close to the sea that we could smell salt in the air when the tide was up so should have all been able to swim if our parents had time and transport to get us the few miles. Mine didn’t. The outdoor pool built in Maldon became unpopular after the polio epidemics, and possibly even before that when the circus was in town and elephants bathed in it.

Finally asthma was diagnosed by the local doctor who came for a weekly surgery The nearest daily surgery was six miles away and the nearest hospital was twelve miles away. Neither sound far today but they might as well have been on the other side of the moon in the days before my parents had a car. I was prescribed Franol tablets daily which should have helped, and may have. A bit. They contain theophyline and ephidrine, both bronchial dilators. Later in life I got the theophyline straight and pansies in front of my eyes - but that’s for later. These days I drink coffee. 

One side-effect of asthma was, when I look back on it, to become of a benefit later. I learned how to meditate. Since the act of meditation means different things to different people, perhaps it would be clearer to say I learned how to go into myself, focus on my breathing to the exclusion of all else, whilst virtually leaving my body. As a small child when an attack came on I went up to my bedroom and lay on the floor. If I stayed with the panicking adults things got much worse so first of all I would disguise how I felt, then I would go up to ‘play.’ When the asthma got worse in later life I employed the same method of dealing with my own rising panic automatically.

It was predicted that when I hit puberty the asthma would increase. The reverse happened. I always like to dumfound. We had moved to a newly built bungalow with slightly better heating. That might have helped. I passed the eleven plus and went to the Grammar school. I believe that helped even more. I loved the learning. It is my everlasting regret that being so dreadfully bad at maths, (I always missed the moment when the next stage was reached at junior school) I was put into the ‘B’ stream in the second year and thus, not being the ‘creme de la creme’ (a friend who did make the ‘A’ stream quoted this to me as their form teacher’s first words of greeting to the illustrious few) I didn’t get to learn Latin. I suspect it would have meant more to me than French, being one of the languages that spawned English. I loved English lessons. Even the grammar. 

Then there were the hormones and the boys. Also new friends amongst the girls. Though I have never been good at making friends I found myself part of a group, possibly we were the losers, ‘B’ streamers who where no good at hockey, but it was still a group. The leader was a charismatic Irish girl who had one leg in an iron, paralysed by polio. I was rather scared of her strong character but she was also a lesson to me - having a disability didn’t mean fading away into insignificance.

So with new horizons opening, many new interests, the asthma faded into a bad memory. I stopped taking Franol though I always had some by me in case. 

School. College. Work and marriage. Asthma. Not too bad at first. I was twenty-two when I got married. We lived in Yorkshire for a few years then moved to London, once my husband’s home, never mine. I was a country girl still starry eyed about the city and loving driving around it. We bought an MG’B’GT. Great get-away potential at traffic lights and excellent for negotiating the Marble Arch roundabout.  Pollution never gave me any trouble. It might not have been so bad in those days, I don’t know, but I worked for two years with an archaeology team digging along the banks of the Thames. Dank muddy, misty, very close to traffic. No wheezing. I remember feeling sorry for one young chap who did get asthma. 

Then we moved to Brussels. Within a month I had asked my mother to send my Franol tablets. Brussels is in a bowl in the middle of the country. It was once malarial swamp. Not hard to believe. Like the Thames Valley around Oxford it often had temperature inversions and the air doesn’t circulate. I had, courtesy of the Belgian medical services and their open-minded views on hormone treatment for women who were failing to conceive, three babies in quick succession. By the second babe things in my chest where tightening. I was prescribed a Salbutamol inhaler. After the third arrived I had to have adrenaline injections and the doctor suggested predisolone. It was a life-line. 

Then my mother came to live with us. She came, not because I wanted her to, but because, as an only child, I felt obliged to offer her a home after my father died. I felt little love, only pity and duty toward her. Having her with us was a strain. Then she had an operation for cancer and nearly died. My own health got progressively worse. I was depressed but fighting it because I loved my babies. The asthma got worse. 

And this is where I began to suspect there is something in the ‘psychosomatic’ theory. Brussels itself was bad for my health, but so were the restrictions living there placed on me. That and the suffocating restriction of duty. 

The years in Brussels are still so painful to me that I can’t write about them. The treatments for asthma, adrenal injections for emergencies, Ventolin (salbutamol) and later on a cortisone inhaler, kept me alive but there was Theophyline which caused serious changes to my character. 

Theophyline: It can also cause nausea, diarrhea, increase in heart rate, abnormal heart rhythms, and CNS excitation (headaches, insomnia, irritability, dizziness and lightheadedness).Seizure’  

When I first took it there wasn’t a ‘slow release’ variety and the moment the tablet hit I got pansies in front of my eyes, visual disturbances that made it hard to function normally. It caused me to be jumpy and nervy. One day my mother said: ‘You used to be such fun,’ which didn’t help. It all put a considerable strain on our marriage. Of course my husband couldn’t know what I was going through. He did his best but only knew it caused him more broken nights, more days off work to look after the children when I couldn’t and neither could my mother, more stress. A wife who was no fun to come home to.

Our doctor tried very hard to help. He had come across a paper by another doctor who had followed the ‘cure’ of a woman suffering very badly with asthma until her husband decided they needed a change of life and moved them to France where he began a quail farm. She ate quantities of quail’s eggs and the asthma disappeared. The doctor who wrote the paper had devised a regime for other sufferers. It involved drinking down twelve raw quails eggs, (beaten together with orange juice if need be) before breakfast every day for ten days. The eggs were ordered (at considerable expense) and I took my ten day cure, waited ten days then gulped down another 120 eggs over ten days, after which I hope I never see another quail’s egg for the rest of my life. I had no hay fever that year but the asthma did not improve one jot.

So, by one set of events and choices after another I came to Scotland. 


The move to the fine air of the Moray Coast didn’t work a miracle but it helped. My health had undoubtedly been undermined by the time in Brussels and I was grieving for my marriage whilst adopting a cheery facade for the three children, now 11, 9 and 7 years. I was glad when the 'psychosomatic' stigma was taken from asthma but I do believe that stress is a serious factor, as is general state of mind. I once gave a short talk to an asthma group in Elgin. I was volunteered for it, agreed, and wished I hadn't. The audience seemed to be largely old men who really didn't want to hear about the effect of stress on asthmatics and were cuttingly sarcastic about it. They suggested I just needed a good holiday. I suppose they belonged to the tribe of people who prefer to think there's nothing they personally can do for themselves, that the medical profession should do it all. 

Theophyline was discontinued eventually. I saw a specialist who checked out my medications. He asked about the Prednisolone. At the time I was down to one a day but couldn’t quite let go of that one. He didn’t think it was going to do any harm (and probably not much good either). It was a crutch. After a while I managed a few years without it, with just the Salbutamol and Flixotide, a cortisone inhaler. (The first cortisone inhaler I ever used had been prescribed for me in Brussels by the professor who designed it.) It has to be said that I often forgot to take it because, as my asthmatic grandson says, ‘It doesn’t do any good.’ It’s difficult to believe, in the midst of a bad spell, that this stuff actually makes any difference. I understand the theory - it’s rather like the daily Franol tablet, a preventative. Still, the bronchioles closing is an 'in the moment' sort of event and comfort comes from having a puffer that releases their tight clenching suffocation. Besides - how to know if it’s needed or not? This was always one of my problems with taking something daily that I might or might not need.

I have had good support from the medical profession both here and in Belgium. However, only one doctor ever took seriously the other physical problems that impinge on my breathing. I have a depressed sternum and a pronounced scoliosis. As I passed menopause and started to shrink a little my stomach protruded more and more and the scoliosis got worse.. Of course I blamed myself for my protruding belly, dieted, etc. Nothing helped. It took my daughter to train as an osteopath then to point out that, as my ribcage has twisted and shrunk in size, the organs have been pushed lower into my body causing the protrusion and inevitably making breathing more difficult. Then I remembered our doctor in Brussels trying to persuade me to have my sternum broken and reset to give my lungs more room. His words were: ‘It will be a shame later on when this causes more problems for you.’ I was so horrified at the thought of having my sternum broken at a time when the children were all very small, that I refused. Now I wish I had listened to him. It is always much more difficult breathing after a meal, however light, and my lung capacity has reduced. I do yoga asanas to keep my chest area as open as possible but the inevitable stiffening has set in. 

And that’s about it really. Whilst in Scotland I have been hospitalised with asthma just once, almost twenty years ago now. That was caused by a variety of flu’ that created a frightening amount of congestion. Otherwise I have been able to get by. Over the last few years my health has deteriorated and the need for Prednisolone to keep functioning has increased, which of course causes a deterioration in my immune system. I am aware of the bad side effects. But as tomorrow is never certain I prefer to be of use to my family whenever possibe and to get as much as possible out of the time I have left..  

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