One thing that I often forget after having ME for so long is how some of the things that take me so much energy are actually time and energy saving things for other people. One example of this is eating out. My family has never been one of those to go out and eat all that often, I guess living in a village without a pub probably helped with that as it’s a bigger thing to drive somewhere than just walk down the road. I sort of only really realised how often some people eat out since being ill, it’s like it’s sometimes a case of ‘I don’t feel like cooking, let’s eat out’ as a last minute thing.
To me, and I think this is something that is similar for a lot of people with ME, there are so many steps for this small thing that affect us that it becomes this ‘big event’ whether it is or not. When getting dressed and ready takes energy then things like sitting in the car, walking to the restaurant and waiting of finding a table are all energy draining to some extent too. Then things in the restaurant; too much light, or too little, conversations going on around that can be distracting and draining and having to sit up in chairs that often don’t have that much support, they all take energy. I know they do to people without invisible illnesses too but it’s a lower percentage of the overall energy taken in the day so this small thing of sitting and eating lunch or catching up with friends that is part of a shopping trip or something that is surrounded by other activities for most people is the only thing we can do in the day sometimes. And then there’s the knock on effect afterwards of having to pay for this for a day, maybe three or four or even a week for some people.
All of this does vary person to person, I know some of the things that don’t take me much energy take a lot for other people and some people can do things I can’t without it having too much of an effect. Part of it is learning what we can do but events like going out will always have some kind of knock on effect.
I know that some of the problems I have when eating out aren’t directly ME related, some of my issues are to do with POTS, which is apparently very common in people with ME, like the fact I’m sitting there in one position means my circulation goes all weird and I get light headed and my heart starts to race. It also doesn’t help that heat affects me quite a bit and it seems like more often than not restaurants are pretty warm, whether it’s because of the weather in the summer or heating and a fire in winter, so these also make me feel worse. The only things I have found so far that help with both of these is getting up and going to the toilets or outside, I think it’s mainly the movement more than anything, or having a very cold drink with ice as just a cold drink helps a lot at times. I also have the fun symptom of post prandial hypoglycaemia which means my blood sugar drops after a few hours of eating, a bit like if you have diabetes without having diabetes, so if the food takes too long to come out I need something to eat so I don’t get all shaky. Basically anything like eating out where I have to sit still in one place manages to push most of the buttons on these things so going out to eat tends to become a lot bigger than it really should.
This may just be me but, as I know these things are all going to pop up at some time in the meal, I get anxious about going sometimes and this makes me feel worse. I try not to but it’s hard to enjoy it when you spend the whole evening feeling sick and dizzy but it’s still always worth it to have the evening out, even if I often don’t actually remember that much of it the next day.
I guess the reason I did this post, which has kind of turned into more listing why I wouldn’t go out than anything else I guess, is that a week or so ago I went out for a nice meal with my parents and sister and it was nice. We went somewhere fairly close that’s normally quiet, though that night it was a lot louder and busier than normal, and the food was good. We weren’t even sat there all that long, I think it was an hour and a half between us sitting down and leaving, but it was still so draining it took me days to recover. And even though I know I have said to family members that going out is really draining it sometimes feels like they don’t really get it. Like the fact that I can manage a night out means I’d like to go out for a meal again in a week’s time.
The main thing I want to say in this post is both to people with invisible illnesses or people who know someone with one. If you have an invisible illness and you know that this evening out will be too much, or it’s not worth the energy that it’ll take for whatever reason, whether it’s that it would stop you doing something else or just that it’s not something you feel you can put 100% into then try not to feel guilty about saying no. Try to do it as soon as possible, though of course you can’t plan for things like a sudden dip on the day that means you can’t make it even if you’d like to. If you want to then give reasons, but if they know you well enough or understand your illness then you might not have to. Maybe try and reschedule if it’s a last minute health dip or see if you can do something another night that’s less energy like a takeaway or a night in with a movie or something.
If you don’t have an invisible illness please understand that it’s not that we don’t want to go, it’s not that we don’t want to meet up and chat or that we don’t want to leave the house it’s that we really don’t have the energy. It’s hard to say no to friends and family and anything you can do to try and understand and make it easier would really help and I’m sure that there are times when sitting at home with a takeaway or something else lower energy would be just as fun with the same group of people. Basically we do want to spend time with you, we just need more time to recharge in between events, even if they seem like small things to you they do take quite a bit of energy.
I hope this didn’t come across as too negative, I don’t think it has but I know when I’ve talked about it with people I know apparently it can seem negative. I guess over time these symptoms and talking about them becomes a part of life, it’s not a negative thing to me, it’s just a fact, like saying the sky is blue or that it’s hot outside or something. Either way I hope this is kind of helpful in some way to someone.
I hope you’re all having a good week, it’s been so hot today and I think we’re meant to have thunder storms tomorrow so crossing my fingers no power cuts. Have a good weekend and I hope you’re as well as possible.