Hypopituitarism & Organisation

Sent in by Jess

You know what I realised today when I was tidying up my medication drawer? Being disorganised is an able-bodied luxury. 

If I forget to order my medication on time, I could end up missing doses and get sick; if I didn’t keep track of dates, I would miss important medical appointments; if I didn’t follow a daily schedule, I’d forget to take my medication at the right times and I’d get really sick; if I was running late, I couldn’t necessarily run/walk quicker without subsequent fatigue; when I’m late, the stress of being late makes me fatigued. 

If I want to go for a day out, I have to plan how to manage it. Will things be accessible for me? Will there be places to sit down? Will I have access to food if my blood sugar gets low? Will I have a chance to rest if i want to do something after?

If I’m doing uni work, I have to plan how to manage it. Have I planned myself enough time to get this done before the deadline with shorter working capacities than my peers, and knowing I can’t “pull an all-nighter” like I used to? Have I planned myself enough time to get this done before the deadline if I get sick or fatigued and have to take a day off?

If I want to go for a night out, I have to plan how to manage it. Do I need to change my medication timings in order to stay out later? Is there a way for me to get home safely by myself if I get sick or have an onset of fatigue? Have I done everything that needs to be done for the next following day, knowing that I am likely to be too physically tired to do those things the day after? Have I done everything I need to do today, so that I can rest my body now in preparation for staying out later?

Being disorganised is an able-bodied privilege. You can do things last-minute? You can be spontaneous? You can go crazy on a night out without worrying about the consequences? You have the capabilities to rush to make deadlines? This is a privilege that I forgot I don’t have.