I get this question a lot. Once people have got through the list of phrases I wish people wouldn’t say, they generally ask me what I do with my time in the day. Which sometimes is out of curiosity, but it sometimes comes across like they either think I’m in some kind of prison, or I’m some kind of upper-class socialite butterfly, depending on the way it’s said.
The prison idea is easier to understand, because I’m not at work because I’m sick, so I am a bit ‘trapped’. So sometimes I do feel a bit like that, especially in the weeks after a hospital admission when I’m really limited with what I can do and whether I can go out. The mistake people make is when they think I’m swanning around, pursuing activities at my leisure and having a jolly good time.
Let’s get one cleared up. I’m not working because I’m sick. What do you do when you’re off work sick? Some days you might not be able to get out of bed. Other days you might be able to watch TV and potter around the house. If you’re off work with a mental health condition or recovering after an operation, you might go to the shops to ‘build yourself’ back up again before returning to work. People might come and visit you to keep you company. That’s exactly the same with me. I don’t have all of the ‘pros’ from my ‘old’ life with the added benefit of not having to work. I don’t work because going to work would probably kill me right now. So I wake up, decide what my body is capable of that day, and work around it. Some days I can do next to nothing, other days I might manage more. One day I might be able to do something and then not manage it the next. It’s not a set criteria, the goal posts move daily. I also have a lot of medical appointments to attend which is sometimes a full time job in itself.
I wrote a post about a Day in the Life of Adrenal Insufficiency a while ago. A lot of it is still the same, but here’s what I spend my time doing, for people who are genuinely curious:
- I write blogs! 🙂
- I love knitting, sewing, colouring when I can concentrate on these things.
- I watch a lot of TV, I’m always after suggestions.
- I chat to friends on messenger/text message
- I’ve got a few (amazing) close friends who either come to visit, I visit them or we go out during the day for a change of scenery. At the moment, I’m not going out by myself in case I get ‘stuck’. If I’m feeling fed up about what I can and can’t do, they’re the ones I turn to for suggestions, help or company.
- I go to medical appointments
- I read books if I can concentrate
- I listen to music or watch TV while I nap
- I spend a lot of time on social media
- I’m trying to learn Spanish
- I’ve set myself a 30 things before 30 list and a 30 foods before 30 list
It sometimes feels like people ask because they can’t understand what my ‘purpose’ is, if I’m not actively doing something with my day e.g. work or taking time out to bring up children. Which I can appreciate, because the thought has crossed my mind a few times, but it’s not like anything they’re likely to suggest will be an instant solution to that problem. And, if you think ‘bigger picture’, what is actually anyone’s purpose in life?! Why should I have to justify mine over anybody else’s?
I dislike the question, because of its negative connotations. If it’s said with surprise, I feel like I have to justify my existence. Said with pity, it can make me feel like I’m some kind of helpless person (which I’m not- I try to be positive about what I can do rather than upset about what I can’t). If people say it because they think I’m having a whale of a time, I have to give them a bit of a reality check. Some people try to offer me suggestions as to what I can do with my time, which it depends on who’s saying it as to whether I’ll listen (do you need suggestions as to how to spend your time, for example?). It’s not very often I get asked the question by people who are genuinely curious, because most people who are curious tend to phrase it slightly differently and more positively: Have you been doing….? Are you able to….? Did you……?
Sometimes people don’t know what to say, or things are said by accident. I’m not an ogre, I can work out people who have good intentions from those who don’t. But I’m already less than impressed that I can’t work, so please try not to make me feel like I need to justify my existence to you further 🙂