Today I felt like writing about mundane, small things that help with coping with everyday life when one has a condition that makes living difficult, such as EDS.
Like I've written before, I have trouble with my hands and forearms aching like hell and thus having a hard time with all sorts of things that need to be done round the house etc. I also have a problem with being a stubborn creature of the worst kind, if I may say so myself... Stubborn in a way like: "I'll manage by myself", "fuck it, I'll carry this and that myself (even if I know it's nearly impossible)", I'll walk, fuck taking a taxi", "I don't need help", "I'll promise myself to do this and that and whatever in time for this and that and I'll do it even if I know it's not possible, fuck it I'll manage, I'll have to manage" and so on.
A real stubborn one, me. But now that I've gotten my diagnosis, I'm starting to try and learn to take things more... seriously, responsively, thoughtfully... um, realistically (oh how I dislike realism, me, hahhah)? Give things, the smallest of things, a bit more thought before rushing head first into doing something. It all boils down to admitting to oneself, that I am not capable of doing all and everything I used to be / what other people are able to do. And hard as it is already, admitting one's decreased capabilities to oneself, being a stubborn arsehole such as I am doesn't exactly help with this whole accepting things as they are -business.
So. It really is a thing that has to be taken care of, the admitting part.
Here are some examples of the small things in daily life I need adjusting with. Okay, first one that comes to mind is making coffee. Lifting the coffee pot, filling it with water, pouring the water into the coffee maker bla bla bla. If I am merely making coffee for myself, the amount of water needed is not much and so the coffee pot when filled with the right amount of water is easier to lift. But if I'm making coffee for more people than just myself, I have come to realise, that it is very much easier to manage with the whole water process-thing by taking following steps: 1. filling the pot little by little, not pouring the whole lot of water into the coffee maker at once; 2. taking a steady grip of the coffee pot with both hands. Makes things a whole lot easier, doesn't take much of extra effort.
Same with filling a bottle of water for drinking. See, in our household we prefer to drink water from bottles and the reason for this is our four enthusiastic and playful cats. Whenever they see a glass of water, they proceed to try and drink from it, throwing it onto the floor, you know the deal I'm sure. So bottles that can be carried around and most importantly be closed so that there's no threat of spillage in case a cat comes near enough. Aaaaanyway, what I was originally wanting to say is this: I refrain from filling my bottle full (it takes 0,9 litres). Genious! Hahhah. No, but seriously, I'm such an over-achiever that even if my hands ache like motherfuckers and I can't hold even a light whatever sturdily enough I go about filling the bottle and then trying to carry it with me in ways I can't even begin to try and explain. No. That's come to an end now. Half or two thirds is good enough for me now.
Other things I do to make my life easier include and are not limited to:
- I have a plastic little chair for me to sit on while taking a shower if I feel too weak to stand up
- I use walls, bookcases and what ever sturdy enough vertical surfaces there are near me to help support myself on
- I am trying my hardest to not do things that need usage of my hands and fingers whenever they ache too much (ie knitting, handwashing laundry, doing the dishes etc)
- changing the shoes I use according to my current situation with stability and aches (plus I only have shoes that are either ankle-tall, have laces or straps around ankles or are boots and those with laces, too) - plus there's this interesting thing with me feeling a lot more stable with at least about five centimeters of heel. So my collection of shoes (which is a rather big one... yeah, ironically enough I'm a collector of shoes) consists mainly of ones with medium to rather high heels, because that's how I've used to moving around. With heels. A big fan of platforms I am, as well. The taller the shoes the better (although I do get a bit dizzy some days on really tall shoes)
- I do my best to avoid letting any and all of my joints locking, one thing I've been doing all my life
- I do not run, ever. Because I can't, thanks to my ankles going where ever they want to, wobbling and giving up if they so feel fit doing
- I do my best to avoid being in straight contact with anything cold, because ouch and goddamn cold hurts me really bad: I immediately feel like my skin and flesh are about to burst and blow up into sharp tiny pieces and fragments of frozen flesh (wintertime in Finland, oh how I love thee.... OUCH)
- I have wrist and ankle supports, am getting special rings to help prevent my fingers bending into the wrong direction, will probably need to get myself a some sort of belt to help support my torso if I'm feeling extra weak and need to be up and about, have a SOS locket from the Red Cross that encloses a small info sheet about all of my chronic diseases, medications, allergies, phone numbers of people to contact in case of emergency and so on. It's made of silver and rather pleasing to the eye, too. Sturdy, has a great locking mechanism (that can be a bit tricky if fingers lack agility, though) and stays closed and is waterproof. And even the info sheet is made of waterproof paper. To those of you Finns reading this, you can get one here (it is also available in steel, mine's of silver like the one I linked)
I have no idea if there were other things I meant to include in this list (see - lists again <3 ). But that's something, at least.
Now I shall go and take a well-earned nap.