This isn’t really a topic that’s just ME related, it could be one for life in general I guess but I have found that I am asked more why I’m not joining in or have people try to get me to join in with conversations more since becoming ill. This may be because I got ill at 15 and so I would have had people try to include me more as I got older anyway because it’s easier to sit quietly in a big group of people like a lot of school years parties are rather than when you’re in a group of less than ten people and everyone is talking to everyone.
I think I would probably be a fairly introverted person anyway even without ME, I am the kind of person who can enjoy a get together while sitting in the corner either talking to one or two people or just listening to and watching other people having fun. I’ve never been the kind of person who wants to be the centre of attention, I’ve always had teachers comment that I’m ‘confident but should participate more in lessons’ which probably does sum up how a lot of people see me.
I’m the kind of person that when I meet new people I either go quiet and blush a lot or I talk probably more than I should and then blush a lot too, both options tend to leave people thinking I’m shy and either being quiet because of this or forcing myself to talk more, neither of which is really true. I talk a lot more and open up with people I know I share interests with, which is probably why I can talk a lot more on internet forums I have chosen to join because of a group or hobby rather than just meeting people in real life. I think that’s another post topic though.
And now enough about me and more about the ME element in this, I just felt like I should put that in there as I’m not one of those people who feels the need to go out and socialise, I guess if I did then maybe I’d feel differently about all of this. One thing with my ME that seems to make it so much worse is when I have to multitask, even on a good day this can drain me in such a short time. This means that going somewhere with a group of people with more than one conversation going just makes my brain go a bit melty and I end up staring at a wall or zoning out until someone asks me something and it’s a bit like those scenes on TV where I’m not sure what I’m answering but I do anyway.
This whole situation is made even worse when it’s somewhere like a restaurant where there’s a small group I’m with having a conversation but then two tables away someone else is talking loudly, then behind me someone else I having a completely different conversation and add the normal heat and the fact I really don’t do well sitting in chairs I can’t fidget in for long and it just becomes one of those situations I really wish I wasn’t in. I realise that’s a long run on sentence but I’m leaving it like that as it sort of works to me.
Is it just me or does anyone else’s family seem to think that going out for a nice meal in a restaurant with a ‘good atmosphere’ is a great way to do something that doesn’t take much energy? It seems like it’s one of those things that over the years people still don’t understand, when things they think of as relaxing really aren’t for me. It’s like they understand going to the cinema or theatre for the noise and sitting still for a while, the walking around historic places or art galleries and even sometimes watching new TV shows that would take too much concentration but things like going to eat out can’t be energy sapping because it’s just sitting there talking isn’t it?
I tend to just go along with it now unless I’m really too tired and achey or my light headedness and dizziness is so bad that I couldn’t sit there for five minutes let alone the hour or longer that it takes to eat a meal. I have ended up staying home quite a bit for these family meals which is disappointing to me and them but I know that if I went I’d be feeling so bad the next day it just wouldn’t be worth it.
Another fun ME symptom, at least it seems to be for me, is the random mood swings when I’m just so exhausted and can’t really get the energy to do much. I’m getting better with these but it seems like when I’m exhausted every little thing just annoys me when it wouldn’t normally. It’s even more annoying because it seems like when everyone else is tired or stressed they’re allowed to be a bit short with people but if I am then I’m being unreasonable. I guess I’m so used to hiding exactly how tired I feel that maybe I do too good a job and people can’t tell when I’m feeling even worse. In the end I spend some of the last of my energy trying to stop myself from snapping and saying something I’ll regret later, which normally ends up with me avoiding people or going to lie down for a bit leading to more comments about me being antisocial or I should have been doing something.
Has anyone else found these things a problem with ME? How do you deal with them? I think it’s something that we all get at some point and in a way ME makes us a bit more selfish than we probably would have been before because we have to be and we have to say no to things that will make us feel rubbish the next day or we end up worse and not being able to do things in the future. We can’t always please everyone and in the end not making ourselves worse is better for everyone in the long run because we can do more the next day even if it feels like we’re letting people down and they don’t get how much little things they don’t notice get to us and use our limited energy.
One of the worst feelings when I was first ill was when I had plans, normally a band me and my friend liked playing locally, that I’d say I was going to, buy the tickets and even get in the car or get to the venue and have to cancel because it was just too much. I try not to let that happen anymore so I don’t plan things that are too big or I have to plan around them and move things around to do them but on the flip side that makes it seem like I’m being antisocial and not going out just because I don’t want to. It’s a very fine line and one I don’t think I’ve really mastered yet, it doesn’t help with new symptoms popping up all the time.
I guess what I’m trying to say with all this is it’s ok if you can’t go out and do things, see if you can get people to come to you if you’re not up to going out. Being a little bit selfish may feel like it’s going against everything we’re taught at school but if it’s the difference between having more energy and not getting knocked back health wise then I think it can sometimes be a good thing in moderation. Learning the balance of not too selfish but still thinking about yourself and your body takes a while but as I said I think it’s best in the long run.
And if you don’t have a chronic illness but your friend or someone you know does then please be patient if we cancel on things last minute. The fact that we made the plan in the first place means we want to spend time with you and use our energy being with you. Our mind and body sometimes have different ideas on what we are actually capable of. (I hope that makes sense!)
I’m going to stop now, though it has sort of started me on a few topics I’ve got planned for the next few weeks so I’m not going to keep talking or I’ll go into them and it’ll just become so long. I hope this wasn’t too long or ranty, I read it back and it did turn into a bit of a rant in parts.
I hope you’re all as well as possible and this British weather that can’t seem to make up its mind isn’t affecting you too much.
P.S. (Does anyone use P.S. any more?) I may have just looked up antisocial as I was posting this, my brain was having a bit of a foggy day and I wasn’t sure it’s the right word, so here’s the definition (look, this post is both bloggy and informative!), these are from the Mirriam Webster dictionary:
1: averse to the society of others : unsociable
2: hostile or harmful to organized society; especially : being or marked by behavior deviating sharply from the social norm
Maybe I should start using the word unsociable rather than antisocial, after seeing so many antisocial behaviour things it seems a bit weird to use it about someone who doesn’t like the company of others rather than someone doing violent or hostile things.