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66 years with Addison’s: looking forward to what each day will bring


ADSHG

  • John joined ADSHG after reading a magazine article by President Deana Kenward around 2003. In the years since then, he and his wife Pam have become active group members, including regularly hosting social meetings at their home. John writes for us here about his experience of living with Addison's for 66 years.

I am pleased to report that, after being diagnosed with Addison’s in 1951 at the age of eleven, I am now 77 and still enjoying life immensely. That’s 66 years of living with Addison’s.

 

My diagnosis followed weeks of worry for my parents as my health deteriorated. A baffled GP was relieved that the cause of my vomiting and utter exhaustion had been found. 

 

I realise now, I was lucky that the then new drug, cortisone acetate, had been developed. This, together with salt, used to control blood pressure before the days of fludrocortisone, set me on the road to recovery. It took five months of hospitalisation before my condition stabilised. I returned home still unable to walk. I remember my ever-loving mother setting targets to walk a few steps more each day, before I became exhausted.

 

It took a year to achieve the balance of cortisone that allowed me to largely avoid those periods of aching muscles and exhaustion. My dream in those early years was to be treated as a normal kid, rather than a mollycoddled existence, a feeling that is still with me today. I attended the open air school at Uffculme in Birmingham.

 

After 66 years of living with the disease, of course there have been worries, particularly for my wife on the “not so good days”. But in the main, I have been able to push the condition into the background. I have had a full and satisfying working life, married with children and grand children. We moved from the Midlands to Wiltshire some 30 years ago, and have travelled abroad. 

 

As with many autoimmune illnesses, I have developed other conditions, namely an under active thyroid and diabetes. The diabetes is controlled by insulin injections. I count carbohydrates to help manage blood glucose levels. It can be tricky as the steroids affect this, but the consequences of mismanaging diabetes can be dire.

 

I have been lucky to have experienced only a few adrenal crises. They were usually associated with a bug, almost always involving an element of dehydration. We have coped, albeit with shaky hands, to carry out the injections.

 

I am now retired, but my health generally is good. I learnt to recognise the symptoms of infection and adjust my steroid intake accordingly. Typical age-related conditions have appeared, such as arthritic hands – and I am generally slowing down. I appreciate a post lunch nap. But quality of life is still a pleasure.

 

We are heavily involved with family. I also get great pleasure from painting, mainly small impressionistic oils. Some of these featured as ADSHG Christmas cards! I have a weakness for books, and love to browse charity shops in hope of a find. I believe that having interesting pursuits helps to focus on the positive, and I still get excited when a new painting comes together.

 

John and grandsons.jpg

 

 

John Painting.jpg

 

I learnt of the ADSHG through a magazine article by Deana. Prior to this, I had no contact with any other people with Addison’s during 30 years or so. Since then, we have enjoyed numerous ADSHG social events, organised by Dory Scott, our South West organiser. We have made many friends. It’s comforting to know that we can ring for a chat, and particularly good when we can reassure a newly diagnosed member.

 

Having lived with Addison’s for the past 66 years, I feel lucky to be living in an age where these conditions are treatable, and still look forward to what each day will bring. 

 

John

 

First published in the December 2017 edition of the ADSHG newsletter.



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The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1179825.

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