- You get to know who your friends really are. When, in some people’s minds, it’s just easier to not hang out with you, it makes you value the ones who adapt and stick around so much more.
- Accepting your idea of fun is just as valid as everyone else’s. You should never be made to feel like you are supposed to be upbeat and super fun because you are hanging out with friends. If you just aren’t feeling it then it’s totally fine to say “Y’know what, I’d much prefer to just watch TV and chill with a pizza.”
- It’s so much easier to do tasks when you break it down into tiny parts. I tell myself ‘I’ll do this little bit for now….Oh well I might as well carry on and do a little more seeing as I’ve started.’ Suddenly the task that had turned into a massive mountain in my head (because I’d been putting it off) suddenly seems realistically achievable.
- You only have so many spoons. Yeah, I don’t get why ‘spoons’ have any relevance to chronic illness, even as a metaphor either. So I use the term ‘batteries’ instead. As a chronically ill person with two hidden disabilities I start of with less batteries to begin with and seem to use them up much faster as well. I’ve noticed sometimes that cooking the food uses up all of the energy that I’d be getting from eating the food so I’m actually in an energy deficit afterward. These days I stop for a quick rest in between doing tasks (sometimes in the middle of them) or I will put my pride aside and politely ask someone if they can help me out as I’m “low on batteries.” It’s a simple statement that people instantly understand and it makes so much difference to how much those batteries last.
- Know your worth. I can’t tell you how many times I’ve been told things like “No wonder you’re tired if you didn’t go to bed until 12.00am!” and other flippant comments which utterly disregard how difficult and complicated the symptoms of chronic illness and disabilities are to cope with. I also get things like “Well no one else seems to mind that….” On these occasions I always breezily ask “Oh, does everyone else have the same sensory processing disorder/chronic fatigue/dyspraxia [insert relevant illness or condition] in exactly the same way as I do?” On days where I’m particularly brain fogged I’ve had people say “Don’t say things like that, it makes you sound stupid” when actually ‘just’ stringing a coherant sentence together is an epic achievement for me and I’m hardly trying to deliver a TED talk am I! Never let people treat you as if your illness/condition/disability is your fault or an annoying inconvenience.
- Getting dressed and out of your PJ’s changes more than just your clothes. It might use up all of the energy you have for quite a while but it will make you feel better emotionally in the long run. It makes you feel more like ‘you’ as you actually look more like you again. It can also make you feel less bound to being indoors and can encourage you to go outside, even just for a short while. I’ve bought lots of ‘chilling clothes’ which are cozy, easy to put on and look good together…Unless my brain fog means I put them on inside out!
- You will probably say or do something pretty goofy in public, either because of fatigue, brain fog, pain, your body going rogue and not behaving or all of the above. Don’t beat yourself up about it and try, if you can, to laugh about it. Adjusting your perspective can mean the difference between being mortified or having a laugh with a stranger.
- When you are having a good day or slightly better day, my gosh do you appreciate that day! That is all.
- It’s the little things that count so focus on what you can do. We had to cancel something we were really looking forward to last summer as the heat was so debilitating for me. Over that week we had a film night with my fave cheesy 80’s films and another with new superhero films and lots of junk food, we took the time to cook nice meals (I peeled the veg, that totally counts), went out to our favourite restaurant, met up with friends in town for a few drinks (and air conditioning), only for a few hours but still great to catch up. We also did a bit of shopping on one cooler evening and treated each other to lovely things. I couldn’t always leave the house and didn’t get up until 4.00pm some days but we really made the most of what I was able to do and it meant so much.
- Having a chronic illness, disorder and/or disability does not mean you are less-than other people or broken, it means you have to use all of your resources, will power and patience to do things, everyday, that everyone else takes for granted. You rock!
I’ve learned to be much more patient when people ask me questions about my conditions, even if they’ve asked them several times before. I’d much rather someone ask a seemingly silly question (as long as its an earnest one), rather than them making an incorrect assumption because it means they are making the effort to understand.