September 1983

This blog follows on from my previous blog, "3rd September 1982".

 

Having left the Royal Navy in Feb 1983, I immediately took a job at a local garden centre.  I had worked here at weekends when I had been at school, and knew the boss and his son's - who I had been to school with - very well.

 

It wasn't a long term career move, but I knew that I needed time to find out what was happening to me and to try to get myself back on track.

 

The job involved doing anything that I was asked to do.  I could be serving customers, re-stocking shelves, unloading delivery lorries, literally what ever needed doing.  It wasn't particularly strenuous work, or very taxing mentally, but at least I was still earning money.

 

Once I was out of the pressure and physical demands of military life, things seemed to settle back to normal and I seemed to be very much better, and more able to cope.  But this was only a temporary respite.

 

I had always suffered from Raynaud's, a condition that causes the extremities of the body to change colour and become very cold, due to poor circulation of the blood.  This can lead to the hands and feet, and in extreme cases - like mine - knees, elbows, chin, ears and nose, changing in colour to white, red and blue, due to changes in temperature.  It can be very painful as the blood leaves the affected part of the body, and it becomes stiff and uncomfortable, and I used to describe it as my hands being "dead".  But it can be worse as the blood comes back into the affected area and the sensation starts to return.

 

I had suffered with Raynaud's since I was very young.  My mother also had it, and we just thought it was us, and nothing particularly odd, as none of my sisters or brother were affected with it.  I remember being in tears after being outside cleaning my football boots, because my hands had become so cold, and even worse after being out in the snow.  But the worst part was coming back in and then having to resist plunging your hands into warm water, as this would send pain shooting up into your hands or feet from the shock of the hot water.

 

I was even known to have my hands go "dead" on very hot days for no reason.

 

I first discovered that this cold hand problem, was a recognised medical condition, when I was on parade one day, whilst in the Royal Navy.  The inspecting officer noticed that my hands were blue, and asked me why.  I responded that it was just something I had always had and was probably due to bad circulation.  He said it didn't look normal - very perceptive - and sent me off to see the Medical Officer.  He took one look and said it was Raynaud's, but there was nothing he could do about it.  So at least I now had a name for my technicolour hands and feet.

 

Anyway, back at the garden centre, although I seemed to be coping better physically, but my Raynaud's seemed to be worse than normal, and I was always having to wear gloves, to try and keep my hands workable.

 

A little while later, the skin on the palms of my hands started to become very dry.  At first I assumed that this was due to the gloves drying out my skin, and stopped wearing the gloves, but it made no difference.  The skin, particularly on my fingers would "crack" and my fingers would be covered in lots of tiny, paper-cuts, which were really sore.  I would need to put plasters all over my fingers to stop these cuts getting dirty.

 

I started using cream to moisturise my hands, but as soon as I put it on, the skin just soaked it up and I needed more cream.

 

I then started to experience pains in my joints.  It would start if I was standing for a long time, and then my knees would start to become sore and painful.  Then I would find that if I was lifting - like bags of compost - my elbows and shoulders would become stiff and sore.  Climbing stairs made my knees "click".

 

As time progressed, I found that standing would make my feet hurt, to the point where I had to sit down and take the pressure off my feet.  It got to the point where first thing in the morning, I would swing my legs out of bed, but I wouldn't be able to put my feet on the floor, because it was too painful.  I would slowly have to ease the soles of my feet onto the floor and gradually put more weight on them until I had got to a point where I could take the pain and stand.  This could take upwards of 5 minutes before I could stand.

 

With the onset of the joint pain, I started to go to see my GP.  He simply put it down to "growing pains" and said that I would grow out of it.  As the pain continued and increased, I was given painkillers, and although these were effective at first, usually I was back to see him a week or so later, because the pain was back, only worse than before.

 

With the joint pain, came skin rashes.  It would start with patches of dry skin on my shoulders, knees, elbows, and then spread to larger areas.  I also had a rash on my scalp and my eye lids became very dry and flaky.  The skin on my face and neck became very red

 

And then one lunch time, whilst at work, I was sat in the staff room - really an old shed, with an old sofa and a dart board - and just fell asleep.  There was no warning, I wouldn't have said I felt particularly tired, but one minute I was awake, the next fast asleep.   A couple of guys came in, saw me, and not wanting to disturb me left again.  It was only when I woke up and realised that I hadn't eaten my lunch, and I was late back to work, that I found out how long I had been asleep.

 

This then became a bit of a pattern.  Sitting down, and falling asleep without any warning.  I started to find that I had no energy, and was tired even before the day had begun.  Also my strength was declining.  Carrying bags of compost for customers, was a normal task, but suddenly I started to find that I couldn't lift the bigger bags.  As time went on, I started to struggle with the smaller bags, or with pushing trolleys with 3 or 4 bags on.

 

On top of this my appetite, which had always been very healthy, just disappeared.  I had no interest in my food, which was unheard of.

 

So everything just started slowly but as time went on, everything became a little bit worse, and then quite a bit worse, until it all became really bad.  I was by now making weekly visits to see my GP, who had no answers beyond giving me stronger and stronger painkillers, which only worked for a shorter and shorter time.

 

During the summer of '83, I went on holiday with my mum and sister, to an island in the Bristol Channel, called Lundy.  It was a place we had often been to during my childhood and it held lots of great memories.  There isn't much there but to go walking and to enjoy the flora and fauna, but it was a great way to get away.

 

Lundy Island

 

To give you an example of how isolated the island was from civilisation, we had been on holiday there, in the summer of 1974, and on returning to the mainland at the end of the holiday, we stayed, overnight in a hotel.  During the evening, whilst listening to the news we heard that Richard Nixon, had resigned as president of the USA.  We had heard nothing about Watergate, Nixon's resignation, and who the hell was Gerald Ford.

 

The island was only 3.5 miles long and 0.5 miles wide, so walking round it even with my declining strength wasn't to hard, if I paced myself.  Early in the holiday, we went out for the day.  It wasn't very hot, but it was sunny and there was quite a strong breeze off the sea.  I was wearing shorts and a t-shirt, as I would do normally, and using sun-cream.  That night, I woke up during the night, to find that my legs felt as if they were on fire.  On pulling back the covers, the skin was a ferocious red, and painfully sore.  I couldn't stand anything touching my skin.

 

I spent the rest of the night in great discomfort.  Anyway I tried to lay, my legs would touch or rub on something, and I was in pain.  The next morning the nurse on the island wanted to have me airlifted to hospital on the mainland, to be treated for burns.  I refused to go as I didn't want to ruin everyone else's holiday, but had to spend the rest of the holiday, indoors or hiding from the sun, because the slightest ray of sun shine on my legs and I was in agony.

 

By the time we got home from holiday, my physical condition had taken a real nose dive.  I had no appetite and no energy.  Muscle was dropping off me and from being about 12.5 st, I had gone down to under 7 st, in about 6 months.  My muscles, such as I had hurt, as did my joints.  I was struggling to walk, and had little or no strength in my arms and legs.

 

Another visit to the doctors, and more painkillers, wasn't very satisfactory.  So out of desperation my mother took me along to the GP's surgery and refused to leave until we got to see the doctor.  (How embarrassing for a 17 year old boy).  We saw the doctor and my mother told him, that we weren't moving until he did something to help me.

 

After much head scratching, I was referred to a local Rheumatologist, called Dr Hicklin, who I saw very shortly afterwards.  I think as soon as he saw me and heard my story, that he knew what was wrong with me, and then started the barrage of tests.

 

I can't remember every test I had but I seemed to have a daily appointment for an x-ray, blood test, EMG, Echo-cardiogram, you name it I had it.  Particularly memorable was the barium meal test, where I had to drink a glass of thick, chalky, emulsion type paste and then have my upper intestines x-rayed.  Then followed the enema to push the same substance into my lower intestine for similar x-rays.  Yuk, I'm glad that's never been repeated.

 

Having done loads of tests, in late August I was taken into hospital, where I stayed for the next 2 weeks.  I was in a ward in an annex of the main General Hospital in Redhill.  This ward was on the top floor and had a glass roof, which meant that on the hot late August days it was like being in a greenhouse.

 

I don't remember much about being in hospital, other than the fact that the ward was full of old men.  A very strict matron was in charge of the ward, and she would tell me off for getting up in the night and going to the toilet on my own. 

 

I had more tests, and then eventually, I had a muscle biopsy on the top side of my right thigh muscle.  No body explained anything about any of the tests or the biopsy, and why I was having them.  I remember being very nervous about the biopsy, even though I didn't know what was happening, but I just knew I was going to an operating theatre, and that was enough to worry me.  As we were going down, the matron came out and spoke to me.  I remember holding her hand, and that she came into theatre with me, and was still there holding my hand when we left the theatre.  (What a sissy!)

 

The biopsy was fine.  The surgeon made a 6 inch incision in my thigh and took what muscle he needed and closed up the wound, and told me not to walk on the leg for 24 hours.  The whole time in theatre, although I was laying flat, I could see everything the surgeon did, in a big mirror that had been swung up onto the ceiling.

 

How different a biopsy was then, to what it is now.  Since then I have had 3 other muscle biopsies.  All the incisions are under half the size of the original one, and I could walk on my legs, later the same day.

 

I was discharged, and sent home with a big bottle of red tablets.  I hadn't seen my doctor the whole time I had been there.  I was told to take a handful of the red tablets 3 times a day - I can't remember the exact dose, just that I took them like Smarties.

The tablets made an instant difference, and probably saved my life. 

Almost immediately, my appetite returned.  I felt I had more energy and the aches and pains started to disappear.  I was still struggling to walk but at least I wasn't getting worse, and over time this began to improve.

In September 1983, I went back to the clinic and saw Dr Hicklin, who explained that I had Dermatomyositis.  The red tablets were Prednisolone, and I would be taking them for sometime, whilst my condition improved.  30 years later, I'm still taking them, and wouldn't be without them now.

I had regular visits to the clinic and regular blood tests, and as my condition improved the Prednisolone was reduced - first in quite large amounts and then in smaller, more precise amounts.

I left my job at the garden centre, and decided to return to school, where I could study for some more exams.  It was a much easier place to start my recovery, than trying to hold down a job.

One of the obvious, and immediate, effects of taking Prednisolone, is that it makes your face swell up.  Imagine as a 17 year old being in a school, with the signature "moon-face", and the names I used to get called.

My recovery took a long time, and wasn't without the odd set back.  I still take the Prednisolone now, and although the Dermatomyositis is pretty will controlled, I have other conditions, some related to this first episode, others not.