I’m not worried about going out with Adrenal Insufficiency, it just requires a bit of planning on my part. I was always organised and liked to know details of a plan, but now I ask questions out of necessity more than anything else, which I sometimes think irritates people. I really don’t want to annoy or inconvenience people, so knowing things beforehand helps avoid this. I thought I’d explain how I plan even relatively simple activities to help others understand.
It takes a minimum of 2 hours for me to get up and ready to go out. If I’ve got a ‘busy’* day planned, I need to do it a lot slower. Which is why a ‘I’ll text you in the morning’ plan doesn’t necessarily work for me- I’ll probably ask for the earliest time I need to be ready. This is so I don’t annoy whoever I’m meeting by being really late.
*My version of busy is a lot less than the average person.
Packing my bag
The longer I’m out, the more stuff I need to take with me. I take (a minimum of) 38 tablets/inhalers spread across the day, more if I’m stress dosing. Plus I have to carry things I don’t take every day, but need in case of emergency. So I need to make sure I have enough medication with me, plus things like water and food if I’m out all day.
Planning my tablet times
I can’t drive after I’ve taken some of my evening tablets. Sometimes I can delay taking them, but sometimes I need to think about how I’m getting home or might ask for a lift. I’ll avoid any changes to my dose on days when I know I’ll be out. On some occasions, I might change my dose times for the day or updose to take into account what we’re doing.
If I drive somewhere, it takes up concentration, which limits what I can do when I get there. I.e. I might have to leave early to make sure I can drive home safely, or I might not be able to walk around as much. I can do a lot more if someone else drives.
I like to know how far I need to walk so I can pace myself. A ‘short 2 minute walk’ which turns into 5 causes me big problems. I work things out by landmarks, e.g. ‘we’re walking to the 4th lampost’, and benches/places I can sit down. I tend to avoid places where I won’t be able to sit down or there isn’t easy access to a toilet. I find stairs virtually impossible.
Until my dietician works out something, I’m sticking with what I know keeps me out of hospital. Which is a lot of carbs. I need to eat at regular times, which I can work out for myself with extra snacks if I know what times I’m eating main meals. If I’m coming to your house for tea, I might ask what we’re having in advance to make sure I balance it out earlier in the day. Vague, ‘I’ll text you in the morning and we’ll get lunch’ plans are hard for me to work out, so I’ll probably ask for a time or if I should snack first.
My temperature goes up and down randomly, so I wear layers and take things on and off all day. If I know we’re going somewhere where there’ll be lots of people or it’s really warm, I’ll wear lighter clothes than normal.
Holding a conversation consistently with someone, especially with background noise, can make me tired. If I know I’ve got things planned one day, I’ll make sure I lie down and eat a lot of carbs the day(s) before. I’m also not as good at concentrating at certain times of day- I tend to avoid talking to most people, except for close friends, around hydrocortisone times because I usually remember very little of the conversation and I don’t always phrase things the way I want to.
My memory is hit and miss, so I write down anything that my friends tell me that’s ‘important’ to them in my phone so I can remember e.g. job interviews, appointments. I ‘study’ before I meet people who I haven’t seen for a long time- I screenshot text conversations or their significant Facebook updates and store them in folders so I can read back over them before I meet up. If I bump into someone unexpectedly, I won’t have had time to ‘study’, so I might seem like I don’t care, which isn’t the case.
Going out of town
The West Midlands is a bit of a ‘security blanket’ for me, since my name is red-flagged with the ambulance service, meaning they know about my condition and how to treat me already. If I go out of town, I make sure I know where the nearest hospital is, just in case. If I go abroad, I also translate any relevant documents into the local language.
I’m lucky that I have a few friends who are HCPs, but if I go somewhere without one of them or my husband, I might tell you how to do my emergency injection or what to say to a paramedic. It’s not because I’m worried about having to use it, it’s more for peace of mind and to save both of us stress if something goes wrong.
Large groups of people or fixed time events
In large group activities or fixed time events, I work out what I can manage based on the information I’m given. I never expect plans to revolve around what I need when there are lots of people/fixed times, I do the bits I can and go home before I start to struggle, or I don’t go in the first place. It’s a bit like what parents do with young children.
I ask questions so that I can work out how to manage myself with as little impact to the other person as possible. And, in true teacher style, the more organised I am, the less likely I am to get caught out. I don’t really like sharing everything I have to do, because I used to worry it would ‘put people off’ making plans with me, but I’ve now realised that if people aren’t willing to accommodate me, they’re not really worth my energy. I love doing things, seeing people and going out, I just have things I need to work out beforehand to make sure I can keep being independent.