4 years and 9 months ago I took my husband to hospital for surgery to remove cancer.
I knew, as we walked Derek to the hospital ward for admission that things would change. He was having his prostate out, there were implications, including not knowing if this would put his cancer in remission, or if it was just step one of a long journey.
We had no idea at that time, that things would go so horribly wrong, and that he would forever by living life on the edge of the precipice, waiting for the slightest thing to push him over the edge.
We spent the first 18 months after surgery going from medical appointment to medical appointment. It wasn’t unusual to be told “wow, and he is alive” like the Dr’s were patting each other on the back for doing such a great job, or shocked that anyone can live through what he suffered (very few do).
Then the appointments they were making started to dry up. So we began pushing. Things were still not right. There were still things that had not been acknowledge, investigated, diagnosed.
After 3 years we felt we knew mostly how the CAPS affected him. Knowing what was wrong, what we could fix (which wasn’t a lot) and what we had to learn to live with.
We kept using the term “our new normal” when asked about how we coped with everything. According to the many medical books out there, most people with Adrenal Insufficiency can just take their medication 2-3 times a day and have a normal life.
Except that this isn’t the case for most.
At the 3 year mark we started reading, we started downloading “stuff”, we started learning everything we could about Derek’s medical conditions. Neither of us has read so many medical studies. Or chased so many references to find the original source data for all the presumptions.
While learning, life carried on. We added meds (at our insistence, not the Dr’s), we changed Dereks dosing schedule as we learned that HC didn’t last long
The we realised it.
We are coming up 3 years since Derek’s last Crisis. We have managed chest infections, urinary tract infections, colds, throat infections, injuries (mostly minor), and frights. All without emergency medical intervention.
We had woken up one day and we weren’t working on getting used to our “new normal”, life was again just “normal”.
When did that happen? When did Derek having Primary Adrenal Insufficiency, Dysphagia, constant brain fog, and a frequent need to “up dose” become just NORMAL?
I had to race home earlier this year as Derek was unwell, but I didn’t panic, I didn’t get a ride with anyone, I didn’t even feel an urgent need to go and get a taxi home, I just took the bus and train, then routinely sorted out his medical appointment and treatment.
I wake every morning and wonder “is this they day I find him unresponsive”, is he going to roll over and take his morning cortisol like normal.
For 4 years I would leave home each day worried about what would happen if I got that call. When I got it, I didn’t panic, I just told Derek what to do, and headed home.
I am never really happy in the morning until I know that he has rolled over and taken his meds. But quite often I sleep through him doing it. Whether or not he is awake by the time I am out of the shower is still on my mind, for a fleeting moment, then things turn to normal daily routine.
I get up, I get ready for work, I head out the door, wishing Derek a good day, and work all day.
There was a time when I had to call or txt Derek 2-3 times a day to see how he was, listening intently to his voice to see if I can get any clues on whether or not he is sick.
Now I only call when I need to speak to him about something. I will still txt him most days, especially if I notice that he seems a little tired the night before. But it’s not with dread of what the response will be, it’s with a genuine “how are you” as you would ask anyone who was tired.
I don’t know when it happened, but our New Normal, is now just Normal.
The misquote in the medical text which originally said “you can live a normal life span” became, for many Dr’s “You can live a normal life.” It is a bit like the misquote from Spock, who never actually said “It’s life Jim, but not as we know it”. It sounds great, but is an urban myth based on some small portion of words.
However, there is some truth in it for anyone who is chronically ill. As the mother of young children, running around dropping them at different activities, sitting up until they were asleep at night, having them with me in my bed when they were sick was all very normal for the situation, but if you didn’t have children, then it wasn’t normal, it was different, it was hard work, it was tiring.
So too with the chronically ill. For the outsider, it isn’t normal to feel tired all the time, it isn’t normal to take multiple doses of multiple medications just to function, it isn’t normal to finger prick every day before and after meals. But for those that do it, at some point, it does become normal.
And that is where we find ourselves. We are out the other end of the tunnel, and that big light heading towards us wasn’t a freight train on our track, it was on the adjacent track. It shook our world when it went flying past, but it didn’t stop us in our tracks, it just caused us to take a little detour in our life.
Derek still has to take hydrocortisone, fludrocortisone, DHEA, warfarin, vitamin D, BP meds, and anything else that he needs to function, but that’s normal.
We are lucky. Our normal is actually OK. We’ve got this.
How did we get here? We got educated. We studied his conditions, and we took control of them and we lived. We continued to do things daily. Some days it is a struggle, but we do it, one foot in front of the other, one dose of medication after the other. Along the way we learned what “normal” meant for Derek, in his blood tests, his BP, his fatigue levels, even his body temperature. Knowing his “normal” and accepting it, means we can work with it.
Part of accepting the new normal was accepting what you can’t change. After working around it for a while, it will become normal. It’s like taking a different road when going to work. If you take it often enough, it becomes your normal routine.
There is a prayer that many groups use about acceptance.
Even if you are not a person who believes in prayer, the sentiment is the same. Acceptance of what is, courage to learn how to change what is needed to change, and the understanding that there is a difference.
There are days when Derek isn’t so well, but that’s ok. We know what to do, and we do it. The good days outweigh the bad.
Normal, in this new form, is not great, but it is good. It is doable. And in the words of a good friend, “He is clearly alive”
I asked Derek his take on this NORMAL
“The new normal is doing less than before, but it is something. We do what we can, and enjoy it. Failure to accept the situation would lead to depression, and I’m not going there
It’s not what Jo signed up for. But it’s what she has also accepted. We have all had to accept it, including the kids. It could never be normal until we all accepted it.”
Thank you to all those who have helped us to get to this point, there are too many to mention here.