Adrenal Insufficiency means you don’t have cortisol, this means you don’t have easy access to your “Stress” hormones. You have to take hydrocortisone when you are stressed. It’s better to take extra BEFORE you get stressed, but of course, you don’t know when you are going to be stressed some times, so that doesn’t work. Stress, both psychological and physical, makes you very tired, this could be stress of work, stress of ill health, stress in the house (things breaking down, kids etc), or stress from an outside source that doesn’t understand what you are going through internally.
We have had various “stressers” lately. Derek has had work issues that have been plaguing him since before he got sick. The kids are “growing up” and trying to be independent (sometimes a little too much). And he has been trying to deal with Accident Compensation Corporation.
Work understands the need to try and control his stress levels. They don’t always manage it, but they try. The kids will always be kids.
ACC are a completely different kettle of fish. They just don’t get what having no “Stress Hormones’ means. They are supposed to be there to make accidental illness/injury and recovery easy, and fast. In practice, they make it a lot harder because of a lot of internal issues within the organisation that they push on to their “clients” that just adds to the stress of recovery. I suspect the most over worked department in ACC is their complaints Department.
It will be 12 months at the end of September, since Derek suffered his Adrenal Infarction. He still hasn’t recovered from the multiple organ failure, and he hasn’t rested because he has had to work to keep paying the mortgage, so recovery has basically taken a back seat. With stress building all the time.
We have decided to take 2 weeks off work. We are going to travel up country to get completely away from work and hopefully ACC. We are only away for about 7 days as I would like Derek to rest for a couple of days before the trip. He will also need to relax after we return as we don’t know what stress the trip will put on him.
Last time we took time off work as for 2 days over a 3 day weekend and we spent the whole weekend redecorating the home office. It wasn’t a rest. In fact, Derek was worse afterward, than before. (See Taking a Long Weekend)
This time, it is OUR time. Not time for the house, or the kids, or anything else. It is for US to have a rest.
What even we didn’t understand until we found ourselves in the position, is how tiring chronic illness can be, not only on the person with the illness, but on the people around them, trying to care for them.
It’s something those on the outside looking in don’t always understand. I have to admit, I didn’t realise how hard it could be. It’s like having a small child that needs all your attention, except they don’t get older, and need you less, normally it’s the opposite. They get worse, and need you more.
It will be the first time we have been more than an hour from home, and our local hospital. We won’t be more than 2 hours from any hospital as we travel up country because NZ isn’t that big, but having to visit a hospital that has not had to deal with Addison’s (and we won’t know if we have to visit one, or if they have had to deal with it, unless we rock up to one) is a little scary.
We are taking 2 emergency kits of 100mg HC with us just in case. We are also planning on taking copies of his medical notes pertaining to September last year so we can inform anyone if something goes wrong and we end up at a Hospital somewhere. New Zealand Hospitals are supposed to be linked so any hospital can access your medical records, but I suspect in practice it doesn’t work that way so better safe than sorry.
I will work on the theory that if we taken them, Derek will behave himself and we will stay out of hospital. If we leave them behind, we will need them.
Planning doesn’t take away the apprehension. It doesn’t matter how much we plan, we don’t know what will happen.
Driving up we have other drivers to contend with. We will be driving through the centre of the North Island, which can close down due to snow, with only an hours notice. It is not unusual to get caught in snow and have to be rescued. Because of this, we will take extra food, and some blankets to keep warm along with our normal emergency items.
We are really looking forward to going away. We are seeing some very close friends whom we haven’t seen for over a year. But it’s also a little scary as we haven’t done this since Derek almost died.
Let’s hope things go smoothly and we get the rest we need. Roll on September.