An article from the February 2001 Newsletter.
One of the few male Addisonion members of our Association, Mike, has put pen to paper to tell us his story. For an unsual twist, Mike’s wife, Diane, has also written her side of the story.
His
Hi, my name is Michael, husband to one (Diane), and father to two (Jaimie 3 & Charley 5 mths - both girls!). It (Addison’s), all started for me back in about 1985, although I didn't realize it at the time. I had some pains that ran from my kidneys down to my, well - you know, ‘treasures’. The GP at the time fobbed them off (the pains) as growing pains or something - I wasn't listening too well, he had just mentioned RECTAL EXAMINATION!
It was soon after that I developed what was described as ‘Sinusitis’, my nose dripped all the time causing me to sneeze CONSTANTLY! I also developed a rash that looked like a heat\fungal rash. Naturally I saw an ENT who couldn't say conclusively what caused the Sinusitis (possibly a deviated Septum?). The skin specialist said, "You've got some sort of rash!" I take half an Actifed daily, for the nose thing and cover myself in Selsun every 6 months for the skin thing!
My general health slowly deteriorated for the next 4 years, but being a strong, young, immortal "Aussie Bloke", I soldiered on. I had a "nose job" in 1988 to fix the Sinusitis (which it didn't), and had a melanoma removed from my left forearm just in time for Christmas. The surgeon chastised me saying, "people with melanomas should stay out of the sun!" Such was the colour of my skin (ring any bells?).
At that time I was working for my parents-in-law in their Newsagency and my health was deteriorating fast. I couldn't sit still for a minute, couldn't eat enough salt or drink enough water, had trouble sleeping, always felt tired, ran out of breath quickly, my speech was slurred, I couldn't think straight, I took quite a long time to do the simplest of things and thought I was going crazy!
My father-in law was surprised when a simple job like collecting the "Returns" took me over an hour and I'd proudly netted only 7 magazines - he knew at that point there was something wrong!
But the crunch (literally), was when I didn't come home from the Sunday morning run. I was found sitting in the car, motor running, wondering why the hell I had backed it into a brick wall. I can't tell you how long I'd been there but apparently it had been a while! Fortunately there was little damage and I didn't get fired - in fact I still work for my parents-in-law, (though not in a newsagency, I hated "THE RUN").
Diane took me to our GP on the Monday and did what wives are pretty good at! I was referred to a Diagnostic Physician who booked me into hospital. I had some X-rays which showed some thickening around the Lung\Heart\Aorta. Naturally the Radiographer assumed the melanoma had "meta-whatevered", and told Diane to spoil me while there was still some time left - there was little hope for me. The Radiographer had obviously not met the Physician, Dr Hope! It turned out to be Sarcoidosis (sounds like a bad drink doesn't it!) And no, Di has never forgiven the Radiographer!
I had some (read: LOTS) of blood tests and when the tingling and paralysis started in my hands and feet I was moved to Nambour General and Intensive Care.
Interestingly, a nurse on duty had a shot at me for not taking my medication. She had nursed someone with Addison’s before and recognized the symptoms! Naturally she apologized when I explained that I had no idea of what was wrong with me.
A shot (or several) of Hydrocortisone, and I was well on the road to recovery, and back to the private Hospital and my television, in time for Sunday afternoon Motor Racing!
One of my questions to Doctor Hope was "Will I still be able to drink alcohol?" He replied "As long as you don't make yourself vomit!"
Hers
I am not an Addisonian, but the partner of a sufferer. Those of you in the same boat would have to agree, (at least I hope I'm not on my own), that that puts us in a unique situation. I find myself these days in the role of benevolent watchdog.
This role takes a million forms. Mike was diagnosed in March 1989. He was actually in Intensive Care when diagnosed, which is a story in itself. Up until this stage, I could not remember Mike having even one day off work. He was an extremely fit, very strong young man of 27. We had been together for eight years by then, so when things began to seriously fall apart, it was pretty obvious.
Looking back, we realise that things had been going wrong for about three years before Mike actually got sick. Great timing! - we had been married in October 1984. Maybe God wanted to make sure Mike 'legally' had to listen to me a few years later. We had arrived home from six months travelling in North America in May 1988 which was great timing yet again!
Mike had been doing some very strange things over the months leading up to his 'collapse'. We were both working for my parents in their Newsagency at the time. This was probably a good thing as Mike did not have the added worry of losing his job, which was nice. Mike had lost a lot of weight, mostly muscle bulk, as he did not have much fat to lose. He couldn't sit still and we'd send him to the bank to do the shop banking - anything to get him out of the shop. He got to the stage where he couldn't stand still in line to do it; he couldn't sit still to eat dinner, etc, etc. He sneezed constantly, had very low blood pressure, often didn't make a lot of sense, was generally pretty ‘agro’ (not at ALL like him), and so on.
Eventually I got him to the GP, who has been marvellous. He agreed that there was something wrong! In the meantime while waiting for blood results, he decided to get a mole checked (turned out to be a tiny melanoma - Merry Christmas 1988 Mike).
Even Mike could no longer convince himself that there was nothing wrong. He backed the Newsagency "run" car into the brick pillar at the front doors of the shopping centre and just sat there waiting for who knows what! That happened early one Sunday morning. Monday morning guess who was dragged to the GP! Thankfully he realised that the situation had gone beyond his expertise.
We were referred to a Physician by the name of Dr. Hope! I kid you not! Long story there too. By all accounts a clinically brilliant man, but very difficult person to talk to. Obviously very uncomfortable talking to patients. This made it really interesting trying to understand what was going on with Mike. After we saw him the first time, when we walked out, I turned to Mike and said: "what the heck did he just say? What was all that about?” Mike, of course couldn't remember a single thing!
His recollection of the sequence of events around that time is very different to mine.
He was almost totally 'out to it' in intensive care, but is convinced he can remember what went on! I have to admit I have found things like that terribly frustrating at times. Mike is SO sure of what he remembers - but my recollection is different. If I push it he tends to get pretty defensive, so I decided long ago that it really doesn't matter, and he can go on thinking he has it straight.
I must admit, I spent a while being quite angry at the whole situation. I was no longer married to the same fit, strong, patient, delightful man. Mike had a fair bit of denial to deal with, which of course had its tough times.
As many of you know, long hot days working on the car, or in the garden, etc had their sequence in a 'bad' day following. The worse part was that Mike’s usual response at that stage was "there is nothing wrong with me! Stop fussing, you're driving me crazy". Grump! Grump!
Not at all like the 'old' Mike.
Our very useful GP pointed out to me that there would at some stage, follow a period of grieving on my behalf. Sooner or later, I would have to mourn the 'lost' Mike. Initially, I thought " What a load of garbage". Well, the GP was right, and it happened about ten months later. Anyway, as with most things, it passed.
There was only one occasion in the early days, when Mike thought that maybe he could do without his medication. That experiment thankfully didn't last long. I know it really grieved Mike to know how much he needed it.
We found after a few months, that Mike was firing on about five cylinders, rather than eight. Whenever we spoke to any of the doctors about it, the response we got was: ‘that Mike was taking the recommended doses of medication, so therefore he was probably just expecting too much!’ - Rubbish!
We decided to do some research on our own, and discovered a lot about diet, exercise and so on. Mike is now a vegetarian (we all are), and has been for about five years with no ill effects at all. As long as Mike: eats regularly; has good protein and carbo intake; makes sure he drinks HEAPS of a variety of drinks when it's hot; eats an awful lot of salt; does regular, fairly high level exercise; gets preferably eight hours sleep; and tries to keep mental stress to a pretty low level, things go along pretty well.
The stress factor is a huge one for Mike, particularly mental stress. With a VERY demanding three year old and six month old, simple family life can be a real drain on him.
At times I find it a real challenge ‘running interference’. It can be pretty difficult at times if Mike has had a stressful day at work, or is tired from a couple of late nights. I understand that it is a result of the changes in brain chemistry that does all this, but as all of you in this situation will know, when your loved one cannot see what's happening, much as you love him/her, it can be SO frustrating!
For all this, I wouldn't trade Mike for anything. In some ways, it has made us far more aware of health and lifestyle issues. It certainly teaches you to appreciate and work towards the best health you can maintain. And that goes along with a great deal of respect for the human body. One thing that has helped me, though it may sound trite, is to remember that there are a lot of people FAR worse off than we are.
All in all, Mike has been very lucky. He has only had one crisis since diagnosis, and that was last Christmas when we had an early morning trip to the local hospital. We now have Solu-Cortef injections in the fridge - another reason to encourage Mike to be nice to me!
All in all, I think Mike manages his condition very, very well. He is extremely tough on himself, and doesn't admit to having a bad day very often. He really tries not to make any allowances for himself at all. Although that can be hard at times, I do believe that it is a big part of his ability to get on with life.
