Wednesday, March 19, 2014

Capable with a side of limitations

"J Hook" in Action
When I was asked to write a post on the topic of “A Day in the Life of an Autoimmune Arthritis Patient”, I have to admit my mind went a little blank. I didn’t want to write about a really bad day, because when I talk about the bad stuff, people often get the wrong idea. They expect me to be completely bed-ridden, or at least much worse than I am, so when they see me they find it hard to reconcile their mental picture with the one they see in front of them. But I didn’t want to document in detail a good day either, because that would give the wrong picture too, and it would then make it harder to explain to people why I can’t do certain things on certain days. 
 
The truth is, there is no typical day for me. I can be fine one day, and really not the next. But there are a lot of things I do every day – good or bad – that healthy people probably don’t. Every day I have to plan, pace and prioritise tasks, so that I can make sure I can meet all my responsibilities without letting anyone down or making myself ill, but Christine Miserandino’s Spoon Theory can explain that better than I ever could. Overall, there are a lot of choices I have make, that healthy people probably don’t and there are also a lot of tasks that I adapt to make easier, mostly without even thinking about it.

I think the fact that I do these things automatically, means that most people don’t even realise I’m doing them. It’s kind of like a duck swimming, peddling frantically underwater, while keeping up the serene, gliding appearance on the surface. I don’t think anyone would ever describe me as “serene” or “gliding” but I probably do manage to appear more capable and independent because I employ a whole lot of “cheats” to situations behind the scenes. 
 
This is by no means a comprehensive list, but here are some of the “cheats” I use to make my days both easier and more productive

·         I consider an electric can opener and electric mixer kitchen essentials, not luxuries, and I also use specialty tools like a jar opener and J Hook*. I don’t bother to try opening bananas, jars, tins, or plastic bags the normal way anymore. Plastic bags and jars can be opened with the help of a pair of scissors (to break the seals on the jar) then bracing the jar against your body, and a banana is most easily opened by cutting part way through with a knife.
·         I stand with my back against “push” doors, and shuffle backwards to open them, and I open “pull” doors a little way with my hand, then use my knee or elbow for more leverage to get them properly open. Apart from my front door, I don’t ever shut the doors in my apartment fully, so don’t have to turn the doorknobs to get them open. I also use my elbows and knees to close cupboards, drawers, and the oven door.
·         I cook big meals, so that I only have to cook once a week and have a supply of left overs for when I don’t feel well enough to cook, or just don’t have the “spoons” at the end of the day.
·         During applause situations, I clap my “good” right hand against my left forearm, because my left hand and wrist can’t do clapping.
·         I use voice recognition software for typing when it hurts too much, and I switch the buttons on my mouse over every so often, so I’m not over-using the same joints.
·         I keep on office “wheely” chair in my living room, which I use as an improvised wheelchair to get to my bedroom if my leg gives out before bedtime. Tip: if you ever have to do this it’s easier to sit on it and push yourself backwards with your feet, rather than trying to make it go forwards.
·         I use water bottles, or mugs with a large handle, rather than glasses which require a proper grip.
·         I always buy hand bags with an across-the-body strap, so I don’t have to carry them in my hands. When I do have to carry things, I tuck them under my arm, or loop the handles of shopping bags over my forearm.
·         I only ever buy pre-grated cheese, and pre-crushed garlic. They're just going to go mouldy waiting for me to use them otherwise. 
·         At night, I often fall going to or coming back from the bathroom. I used to fall right next to my bed, which was incredibly demoralising. I could tell, even in the dark that I was so close to it, but wouldn’t be able to pull myself up. So my cheat for this: if I’m past a certain point in my room and I start to fall, I don’t try to stop it but just propel the fall forward as much as I can. If I’m lucky, I land face down on the bed, and then I laugh about it a lot. If I’m not so lucky, I land on my knees next to the bed, but that’s still easier to pull myself up from.
·         I listen to music while doing a lot of tasks, because I find distraction is one of the best forms of natural pain relief, and I can cope better if I manage to keep my mind off the pain for longer.
·         I always aim to leave the house 25-30 minutes before my bus goes. On an average day, the walk takes 16 minutes, and on a really good day it can take less than that. But I have to prepare for the fact that until I start walking, I can’t tell for sure what type of day it is. This way, I don’t miss the bus, even if it turns out to be a really bad day, and if it happens to be an especially good day, there will probably be an earlier bus I can catch anyway.
·         I usually eat soup or smoothies for lunch, so my poor jaw joint gets a rest from having to chew too much.
·         I know where the lifts are in most public buildings. If there aren’t lifts, I make everyone go ahead of me on the stairs so that I can go as slow as I’d like to. Every so often there will be someone trying to be helpful, who will insist they don’t mind waiting. I’ve learnt to stand my ground, and make them go first, because no matter how much they don’t mind, I will still feel compelled to force myself to walk faster in order not to hold them up.
·         I use Molly Stick even on good days, just in case things go bad suddenly. This happens a lot, but Molly Stick means I can still get myself home or to a taxi safely.
·         When I stop at street crossings, I take the weight completely off one of my feet to give the joints on that side of my body a rest.
·         I wear wrist splints at night to stop the pain getting really bad while I sleep, even if my wrists don’t hurt when I go to bed. This gives me a better shot at a good night’s sleep, and functioning hands in the morning.
·         If I’m standing talking to someone, and I start to feel dizzy, I scrunch my toes up to try stop myself passing out. If it seems like my leg is about to give out while I’m teaching, I press my palm hard flat against the desk, and shift my weight on to the other leg. I can do this without alerting anyone to there being something wrong, and while still concentrating on what they’re saying.

This was supposed to be a short list, but the more I wrote, the more things I thought of. There are many, many more, but I think this is enough to give you an idea of the kind of things an autoimmune arthritis patient might do in their day, just to make it through.

Thanks for reading,
Little Miss Autoimmune

* a tool for opening pull tabs, found in disability supply shops.

4 comments:

  1. Wow! you are right! I never realised how much I have adjusted my everyday life! Seeing it written out like this is eye opening to say the least. I am very lucky as I am married to a wonderful, helpful man and my son is still with us. They also have naturally adjusted too, they automatically do things for me without me having to ask now. We are evolving as a family LOL

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    1. It's funny how family and friends adjust too, isn't it? I always notice it when I around people I don't know that well, as they will try to help, but don't really know how. You get used to the people you're close to automatically doing the right things! Thanks for your comment, and thanks for reading xx

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  2. I have a jaw problem too. I wonder how long it will be before it becomes a bigger problem. Good thing my anxiety level has diminished. That was a real problem for years

    Nice to meet you

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    1. It was lovely to "meet" and chat with you too, Annette!

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