In 2013, my second post was very short. It was entitled “As single road at times”.
My posts back then were very short. They were a lot about how I was feeling, how we were learning to live with this condition strange new called Primary Adrenal Insufficiency (Addison’s Disease).
It was May 2013 that I began to Blog. In the last 6 years a lot of things have changed. But a lot have stayed the same, we have just learned to accept them and adjust to them.
Going to live performances, etc alone has become a new normal. I buy 2 tickets, and find someone to join me if Derek isn’t up to it. This could be a big show, or one that our children are performing in. Adjusting things so that we can go together has also become a “thing”. Whether that is by buying a matinée performance ticket instead of a night time one, or making sure he has a full day of rest, including a sleep, we will do what we need to, to keep going.
In May last year Derek had a set back. It was serious but it wasn’t obvious. A few blood tests went haywire for no obvious reason, he became a lot more tired than normal, and other subtle differences occurred. Despite this we carried on with life. We continued planning our big adventure overseas.
We did the trip. It was extremely tiring on Derek. We did a lot of walking with him using a walking stick constantly. We would walk, stop for coffee, walk, stop for a cold drink, walk, stop for a few photos, walk, stop for an ice cream (they make great ice cream in Europe). You get the picture.
Derek has been more tired than usual since getting home. It’s now 6 months since the trip and he is still a lot more tired than he was before May last year. So we have made more adjustments.
We have learned from that trip that you have to choose the fight. So now, if we are going out and we know it will be stressful, or very tiring on Derek, we use a wheelchair for him. After borrowing one for an evening we knew would be too hard on him without, he finally agreed that he really did need it. But not all the time, just for the harder events. It means that sometimes he can go out, and we can enjoy ourselves together. I still go out on my own because he is not up to it. Or we cancel our plans because I don’t want to go alone.
What we thought was just residual tired from the trip appears to not be that at all. After having more “crazy blood tests” we began to wonder. We have now looked at his bloods for the last 12 months, what ever is wrong, has been wrong since his various blood levels went haywire in April/May last year. But that’s ok, there is nothing we can do except keep an eye on his levels so that is what we do.
The reason we know things have not be right since May is that we keep track of all his blood tests. We don’t need to go the Doctor to ask, we can see. We know the symptoms, we know the signs and we can see his “normal” is changing and not for the better.
Having said that, in the words of a good friend who writes an amazing blog, he is clearly alive and will remain so.