Me and My PA
My story starts in September 2001. The previous year I had turned forty and I was in my eighteenth year of lecturing in Further Education. I had a very active lifestyle, running a very popular National Diploma course for full-time students, Hill Walking and Leading Walking Expeditions, playing drums in a rock band, teaching drum-kit to exam standards, playing tennis. I was always on the go. Then, in or around late 2001 I started to feel tired for the first time in my life. I knew what it was like to be tired after three days of hill walking – and that was a nice tired. But this tiredness was more than physical exhaustion. It was an insidious tiredness that never really went away. I was even tired after a good night’s sleep and this was, of course, due to me reaching middle-age that I had read about. There were other little indicators that middle-age had arrived. I started to forget things, even found concentrating to be more and more difficult and began to experience breathlessness more and more. ‘This was it’, I thought; ‘it’s all downhill from here’.
I still kept up my hectic lifestyle and one evening I was playing in a band at a local gig. At the end of the set, and in true rock-star fashion, I jumped off the stage onto the dance-floor below. I landed in a pool of what was probably beer and found myself suddenly horizontal about five feet above the floor before suddenly falling hard on my back. It was quite a spectacular piece of Cabaret for a finale and the crowd were genuinely pleased to see me get up and laugh off the whole event. There was no damage done.
A few days later my legs went numb overnight. I awoke one morning and realised that I had no feeling from my toes up to the middle of my thighs. And my feet and knees seemed to be bloated. ‘Probably due to the fall’ I thought, ‘they’ll return to normal soon’.
They didn’t. After a month or six weeks of having no sensation or feeling in my legs and feet I booked my first appointment with a doctor. He didn’t seem particularly concerned explaining that it was probably due to the fall but that it was best to let nature do the healing. I agreed and, re-assured that everything would soon be back to normal, resumed my busy life.
The tiredness became increasingly difficult to deal with. Even as a child I had managed on the minimum amount of sleep and I remember being told by my friends mothers to not knock their doors before 9 a.m. which meant that for three hours in the mornings I had to occupy myself alone. I can remember thinking it quite unremarkable that Mrs. Thatcher needed just four hours sleep per night. And here I was, having to force myself awake every morning. The breathlessness was bizarre as it seemed to require me to yawn and yawn and yawn as well as take deep breaths one after another. Then my concentration took a dive and I started to experience ‘fogs’. These are quite difficult to explain to somebody who hasn’t experienced them but it is as if there is a ‘fog’ that prevents you from understanding things clearly; it’s as if something was between you and what you were looking at or hearing or saying. These ‘fogs’ would last a day, or two or three. Then suddenly I would awake one morning and suddenly everything was clear again. By January 2002 my legs had not repaired and I was now starting to stumble and had developed an ungainly gait. This was around the time that I suddenly became aware that I could not tolerate heights and would become very unsteady on my feet when looking up. There was obviously something wrong and one of the doctors at my local surgery sent me to a Neurosurgeon for a consultation.
“Well you had a fall, you got back up – I don’t think this is related to the fall” he said. “I want you to have an MRI Scan to rule out a number of things”. “What’s an M.R.I. Scan?” I asked blankly. He explained and I went ahead with the scan which proved that there was “nothing sinister there” – I later discovered that he thought I might have Cancer of the Spinal Cord. Whilst all of this was going on I was still carrying out my normal hectic schedule and discovering new things wrong with me. In Dublin with a mini-bus full of students I stopped to ask the way of two Garda who were walking away from me. I went to run after them but discovered it was impossible. My legs just wouldn’t go fast and I made quite a spectacle for the unsympathetic students who genuinely couldn’t see the serious side of what might be going on. I laughed off the incident along with them but inside I knew that my condition was deteriorating.
In the spring of 2002 I started to have personality changes. I became very irritable with students who sought help or clarification about something. And this was the part of my job that I loved the most – helping people. Now I would treat students as in irritant, and my mood-swings were being noticed at home where I was increasingly short with my wife. It was around this time that I would completely forget a conversation I had had the day before, forget where I had parked my car, get confused trying to write sentences and really just wanted to crawl into a dark hole and sleep. As I left a lecture room I couldn’t remember what I had talked about for the past hour before going into another lecture to talk about something. I started to experience the need to cry for no apparent reason. And I began to realise that I was depressed. Something would have to be done but time and time again people would listen to my symptoms and laugh it off as being middle-age related. I tried to laugh with them but was starting to get seriously worried.
I didn’t mention the severity of me trying to cope with everyday life to anyone, not even to any doctor. I thought that the depression was my own making, and that the physical symptoms were all related to the fall. The tiredness, or rather the chronic fatigue, was all due to middle-age – a fact confirmed by others that I talked to.
By mid-May I was close to collapse and, when walking to my local surgery for yet another doctor’s appointment, stumbled, fell in the middle of the road and couldn’t get up. I know how it feels like to be ridiculed and scorned at for being drunk in the middle of the day because as I tried to get up onlookers thought that I was completely drunk. A Police officer eventually helped me to my feet and I convinced him that I was not drunk. “What’s wrong with you?” he asked sympathetically. “I don’t know” I replied.
The police officers kindly took me home in their car – the first and last time I had ever been in a police car. I was confused, frustrated, angry and very, very, very tired. After an hour or so I telephoned my sister. My sister is a Sister in that she is a nursing Sister in the community – she is what used to be called a District Nurse. She immediately drove to my house where I was stumbling around holding onto anything that was solid to help me walk. She could see that I was in some distress. My main concern was that I had not attended the appointment with the doctor. “This is ridiculous”, she commented, “I’m taking blood so that we can get to the bottom of this”. At least that’s what I seem to remember. This was not a normal fog that I was in – this was a real pea-souper with no sign of it lifting. I was the most needle-phobic man on the planet. I would wince at even the thought of a needle but now I didn’t care what she did and where she stuck the needle – I was just not interested.
I can’t remember much after she took blood, I cannot remember what conversation I had with my wife that evening, and I can’t remember how I got to work the next day. But I do know that I was in a classroom the next day because someone from Personnel popped her head around the door and asked me if she could have a word. I stepped out of the classroom and she told me that my Doctor had been on the ‘phone and that I was to telephone him immediately. They had tried to telephone me at home but they had my old number. I went to go back into the class fully intending to talk what must have been drivel until the end of the lesson. She grabbed my arm, “I think you ought to telephone him now, he seemed quite concerned”. I went into my work-room. There was nobody else in there as the all the other staff were teaching. I telephoned the surgery and asked to be put through to this particular doctor.
“Are you ok”? asked the doctor, who was Irish. “Yeah” I lied. “You need to come straight away to the surgery, right now, we have a diagnosis”.
“What is it?”
“I’ll explain when you get here – come straight to my room”.
“I’ll come now. How long will I be, I have a class at 12”?
“You’ll not be doing any teaching for a while” he replied. At least a week, maybe longer”
I put the telephone down and went to see my Head of School to explain, or rather not explain, what had happened. She re-assured me that there was no problem but I could already see that I was causing problems. I stumbled to the doctors making use of any standing wall to steady myself. To onlookers I appeared drunk – very drunk. I went straight to the doctor’s room as instructed. I can’t remember how I felt. I must have been relieved that at last I had a diagnosis. And I must have been worried what that diagnosis would be. But everything was just too much to think about and I was desperate for any help that I could receive. At the back of my mind must have been the knowledge that this was the only doctor in the practice that I hadn’t seen before.
“We think it’s Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia” he said.
I was stunned.
“Can you cure it?”
I remember this bit. I was looking straight into the doctor’s face. He looked away. He looked down and to his right. “We can sort you out. We’ll sort you out. It’ll all be sorted”
“What will happen?”
“You’ll have to go into hospital. You’ll have to have blood transfusions. We’ll get you in today”
“How long will I be in hospital?”
“We don’t know”
“A day? Two days? Three?”
“We don’t know – maybe a lot longer than that”
“We don’t know”
“But you can cure me”
“We’ll sort you out”
“How long will it take to cure?”
“Well, you’ll be on injections for life”.
“What kind of injections?”
“Vitamin B12. You’ll need lots in the next month and then every three months for life”.
“What do I do now?”
“You go home and wait for me to telephone you. Make sure that you give your correct number to reception and let me have it right now”
“Can you write down what my diagnosis is?”
“Sure”. He wrote down the diagnosis on a slither of paper that advertised some medicine and I stumbled out of the room.
I returned home and waited. My sister was on her way to France and I phoned her mobile. I told her the diagnosis. “Oh my Gawd” was the unhelpful response.
“I have to go into hospital for transfusions” I told her. “What am I going to do?”
“Well you just have to be brave” she replied in her best ‘pull yourself together’ tone of voice. I am not a hospital brave; I am a hospital wimp.
I was now very, very confused, tired, exhausted, overwhelmed and unsure what I should do. I didn’t know how to react. My emotions were completely out of control and I struggled to be logical. The doctor ‘phoned. There was no need after all to go into hospital, “Just report to the Nurse in the morning for the first of your injections”. I went to bed at three o’clock and slept solidly until eight the next day. I tried to explain things to my wife but this was difficult. Surely my condition couldn’t be due to a vitamin – you could buy vitamins on the high street. This had to be more serious than a lack of a vitamin.
I had stuck the diagnosis to the fridge using a magnet. “Why don’t you look it up” she said. I reached for a Dictionary. The root cause was Pernicious Anaemia – the sub-acute thing was secondary to that and so I looked up Pernicious in the dictionary. I knew it didn’t mean something nice but when I saw that the dictionary stated it meant not only ‘ruinous’ and ‘destructive’ but, more worryingly, ‘fatal’. I closed the dictionary.
I reported to the nurse an hour later in an even more confused state than before. “Do many people have Pernicious Anaemia?” I asked.
“Not many young people like you, and not many males. It’s usually elderly ladies have it”
“Do they live long”?
“Oh yes – people used to die with it but now we’ve got this”. She held up a small little bottle with some re-assuring red liquid in it.
“Is that the B12?”
I looked at the floor when she reached for the syringe and needle.
“Now the secret is to relax”
I couldn’t relax. I felt a dull ache as the liquid entered my right arm muscle.
“Well done” she said.
I now know that this isn’t the easiest of injections to carry out painlessly. I have heard stories of some patients who have not driven for three months because of the pain of the injection. But mine seemed pretty straightforward.
“There – see you tomorrow” said the nurse.
“How many do I need?”
“Ummmmm”, she consulted some form. “Doc says every day for a week, then weekly for four weeks and then monthly for three months then once every three months for life”.
After three days of injections the pins and needles that I had experienced for a year in the tips of my fingers disappeared. After a week the fog started to clear. After a month I felt that I could cope with life for the first time in two years. I felt confident that improvements would continue. After my last monthly injection I could look forward to three months of not having one. My physical problems didn’t improve and I have permanent nerve damage to my spinal cord and peripheral nerves, but mentally I became more focused and the fog lifted.
I believed I was cured. I was wrong. Six weeks after my last monthly injection I started to feel foggy again. The old symptoms returned with a vengeance. I would talk mumbo-jumbo, state obvious facts that were obvious (“the Queen Mother has died” I told my wife one day. “I hope she is dead” she replied, “they buried her nine months ago”); the forgetfulness returned, I became irritable and angry. I suffered severe mood swings. I couldn’t complete even the most mundane task without real effort. I panicked. It was all going horribly wrong again. I went back to the doctors and found the original diagnosis doctor had left the practice.
“I need another injection”
“But you don’t need one – every three months is the normal”
“Perhaps for some people but not me” I argued.
“It’s all in your head. Would you like some anti-depressants”?
“It’s not in my head. I’m going back to how I was”
“What if we send you to a Haematologist?”
“No problem” I said.
A few days later I was in the consulting room of a Haematologist who took blood and carried out a full physical examination.
“I need more regular injections” I pleaded, “and the doctors won’t give me more frequent jabs but I know, I really know, that I need them”
“Okay” he said.
“But why won’t they prescribe more frequent jabs?”
“Because for most people an injection every three months is fine; and the guidelines they follow state three monthly injections are the norm. But we Haematologists know that some people need them more often. Maybe about 18% of people with PA need more regular injections even though the amount of B12 in your blood is very high. We simply do not know what goes on at cell level so, because there is no possibility of overdosing on B12 I’ll sanction an injection every month”. I could have kissed him.
I now know that I was very lucky. A great many sufferers of Pernicious Anaemia need more frequent injections than the usually prescribed twelve weekly regime but are unable to get them. Many sufferers are prescribed anti-depressants for years before the patient manages to get more frequent injections – they then consign the anti-depressants to the bin.
And that is that. I had to give up my career and take early retirement. I now know that the fogs don’t entirely go away even with frequent injections. I still get three or four days a month when I wouldn’t be able to tell you the day of the week it is. And I have had to relinquish the rock ‘n’ roll lifestyle and take things easy. Stress or heavy demands all lead to days where my quality of life is seriously affected and so now I take things easy.
When I had to finish teaching I started the Pernicious Anaemia Society (actually it was originally called the Anaemic Society), and in 2006 we were registered as a charity. We have a very active website –
www.pernicious-anaemia-society.org and our members are from all over the world. Our membership used to grow by around ten a day on average. In 2009 we introduced a one-off membership fee of £20. Our membership continues to grow by an average of two a day. We now have over 4,000 members and in April 2009 we published a Review of the problems in the Symptoms, Diagnosis and Treatment of Pernicious Anaemia.
The aims of the society are to provide Information, Advice and Support for sufferers of Pernicious Anaemia – and our members are now helping to fund much needed research into the condition.
The most common topic for advice is about the frequency of injections. Some lucky members are able to get ‘on-demand’ injections but others are refused. This has led to many patients experiencing total frustration and often the relationship between the doctor and patient completely breaks down. Members cannot understand why some sufferers are allowed a flexible treatment regime while others are not. They have identified this issue as being the one that needs explaining. And a Haematologist is working with the society to carry out research on why people need more injections than others.
The lack of a unified approach to the treatment of PA is not confined to the U.K. Different countries use different ways to deliver the B12 into the blood. In Canada it is Cyanocobalamin and not Hydroxocobalamin. In other countries a nasal spray is used along with patches that are placed behind the ear. Sub-lingual tablets are often used to supplement the injections but their efficacy is doubtful.
The issue of on-demand injections would be the single most important way in which a large percentage of the half a million people with Pernicious Anaemia could improve their life. Until this happens some members who recognise they need for more frequent injections take matters into their own hands and travel across the channel to France or Spain where the little life-saving ampoules are available ‘over the counter’ at pharmacies. They then self-inject and carry on their normal lives.
Most sufferers of P.A. also show a tendency to develop other auto-immune diseases. Psoriasis, Hypo or Hyper-thyroidism, Diabetes, Irritable Bowel Syndrome, Rosacea, Eczema – they are all well known to sufferers of Pernicious Anaemia. But the most common condition that members suffer from is not an auto immune disease but is surprisingly common among members – tinnitus.
The diagnosis of Pernicious Anaemia is often a long time coming as the symptoms are indicative that a change in lifestyle is all that is needed. Tiredness is often seen as being due to hectic life and work schedules; Breathlessness by the onset of middle-age and maybe stress; Confusion and forgetfulness as being the result of the ageing process and the mood swings the result of overload of information. When it is eventually diagnosed it would make a great deal of difference to sufferers if they could truly manage their medication needs by defining their own frequency of injections, just as some are lucky enough to be able to do now.
© MartynHooper.com, September 2010