medicalert medicalert

 

I was born in 1959.

I live in East Sussex near the South Coast resort of Eastbourne in East Sussex. I have lived here most of my life having returned to manage the farm where I grew up. This was despite having obtained a B.Sc. in Electronic Engineering. The lure of country life was too strong!

I was married in 1987 to Su, and we now have 3 wonderful children aged 15, 11 and 9.

At the end of 1990, I started a commercial pilot training course. This was a development of a hobby I had pursued sporadically since my early twenties. It now seemed a golden opportunity - with a shortage of trained pilots- to supplement a dwindling farm income.

Unfortunately, the timing was not so good in other respects. Sophie, our first child was about 6 months old with all the demands of children this age. Su was quite depressed and perhaps resented my demanding schedule which often meant 2 or 3 nights a week away. The stress was increased by the sudden decline in the aviation industry, due to the economic depression. This culminated in the demise of the flying school with the personal loss of many thousands of pounds in pre-paid fees. However, in the weeks leading up to this, I had been feeling more and tired and I had a persistent problem with mouth ulcers.

 

wjr1991
This is the only picture I have found from the period before my diagnosis. By this time, my weight had dropped from 13 and a half stone to under 11 stone, my colouring had become very dark and I could not stand for more than about a minute before needing to sit down. Sophie, our eldest child, is in the foreground. She was about 5 months old.

With the flying dream now over, I returned to the farm. I became noticeably weaker and I was losing weight. Unfortunately, I was not diagnosed at this stage and I think the local doctor put my condition down to stress. I struggled on, trying to convince myself that nothing was wrong. Eventually, I ended up in tears sitting on the stairs of my parents' house, having struggled in vain to shovel several tons of wheat out of a grain silo. At this point we realised something was definitely wrong.

The diagnosis did not come quickly though- my local doctor was on holiday and the locum prescribed me antibiotics- I had developed quite a bad chest infection. Eventually, I was referred to a local endocrinologist. By this time, I could barely stand for more than 10 seconds without feeling faint. In fact, my blood pressure did not register at all on the scale when the specialist tried to measure it. In fact, he had diagnosed me as soon as I had come into the room. By this time, my skin was very dark.

A feeling of relief swept over me as I realised that someone not only recognised that was I ill but also he knew what was wrong! I was admitted to Eastbourne DGH immediately. I lay in bed feeling a bit of a fraud. I felt no pain - I did not even feel particularly ill when I was lying down. I knew, however, that life might not be the same again. As I lay in bed I contemplated what lay ahead. After the elation of the diagnosis, the full facts of my condition were sinking in.

" The good news is that we know what is wrong with you and it is treatable. The bad news is that you will have to take pills for the rest of your life"

At the time, I never took any tablets- not even a paracetamol. I had quite an aversion to swallowing pills whole. However, this was going to be my life now- at the age of 30.

My first reaction was to try and carry on exactly as I had before. It became apparent quite quickly that this was not going to be possible. I was experiencing a daily "low" at about 6 p.m. - just at the most stressful family time for putting babies to bed etc.! I was also diagnosed with hypothyroidism. I was now on Hydrocortisone (20mg. am, 10 mg pm), Fludrocortisone (0.2 mg am) and 100 micrograms of thyroxine.

I carried on with this medication for a few years. I renewed my private pilot's licence, but the Civil Aviation Authority were not prepared to give me back the Class 1 medical that I needed to pursue a professional flying career. I was not sure that it would have been a sensible career in any case.

 

pillbox
a simple thing - but a pillbox like this makes live a lot easier, particularly when travelling.

I stayed fairly stable for the next few years. However, I was finding increasingly that the mornings were becoming difficult for me. I was feeling very muddle-headed and not able to concentrate. My routine check-ups at the hospital were frustratingly superficial and usually carried out by a junior doctor . I was beginning to feel as if nobody was really monitoring my condition or even very interested.

At about this time, my wife spend many hours trying to find out more about Addisons and whether there was anybody else I could see. It was a frustrating experience until she came across the Addisons Disease Self Help Group- at that time run practically single-handed by Deana Kenward. As a result, I managed to get a private consultation with Professor Besser, who was then at St. Bartholomews Hospital in London.

I went to Barts. Hospital for a week. They carried out a day-curve test which gave a much more accurate picture of how much cortisone I needed. In fact, I ended up on more hydrocortisone but less fludrocortisone. It was felt I was using up the cortisone much quicker than expected. I ended up on 40 mg of hydrocortisone, 0.1 mg of fludrocortisone and 150 micrograms of thyroxine

The dose of cortisone has now been reduced to 20mg early am, 15 mg at lunch and15 mg in the evening. I have generally felt very well.

NEWS: 22/3/05 I suffered an Addisonian Crisis last month! My confidence has been somewhat shaken but I am getting back to "normal" now

In future, I will be providing personal updates either on the forum or on "My Diary".

     
April 2005. My weight is now fairly steady at just over 13 and a half stone. I still tan easily but not to the same degree as before treatment.