You don’t wake up with the intention of not being able to do anything with one of your limbs, let’s use your predominant hand for an example (your left hand if you’re a lefty, your right hand if you’re a righty!).
You wake up wake up feeling like a normal human being, your day is an average one, nothing you can’t handle, nothing in the day that is particularly challenging. As your day progresses you think of the simple things that you want to do with the rest of your day, you make a list:
-Strip the bedding.
– Do the washing.
– Wash the dishes.
– Put fresh bedding on your bed.
– Make yourself food.
– Wash your hair.
– Dry your hair.
– Brush your hair.
– Put your hair up so it doesn’t get tangled.
– Undress yourself.
– Dress yourself for bed.
– Get into bed.
Normal things to do, right?
You strip the bedding off your bed. There is something incredible about getting into freshly washed sheets and going to sleep, so you want to treat yourself. (Plot twist: It’s about to become a nightmare!) … Your predominant hand is starting to swell slightly, it aches like you’ve torn every ligament in your wrist, it feels hot but there is nothing you can do, you have to get on with your to-do list. You use your left hand to carry the washing down to the washing machine (or the hand that isn’t hurting!), you place the washing into the machine, but only using one hand, your other one hurts, remember? You win this time with the washing, close the door, press the button, and leave it to its job.
While you’re waiting you do the washing up, you rely on dipping the sponge/cloth into the water with the plate at the bottom of the sink and you make a lot of mess by splashing trying to scrub plates clean with one hand. It needs doing, you can’t give up, and you have nothing to eat off. A good 45 minutes later (and it was only three big plates, two side-plates and a bowl that you had to wash!) you’ve done the washing up, after smashing at least one plate and having to clean that up too.
The washing is ready to go into the dryer! You sigh knowing you’ve not been able to sit down and watch that TV show you really wanted to watch that you left buffering on Netflix. Oh well. Open the washing machine door; grab items of clothing one by one to put into the dryer, with one hand! You try push yourself into using both hands but fresh washing when it is wet is rather heavy to your poorly hand, so you’re back to square one. Fill the dryer with wet washing with one hand and everything is falling on the floor. Yep, that nice clean bedding you just washed that is all tangled up from the washer is falling onto the dirty floor, because you can’t use two hands to catch the odd sock or pillowcase that jumps out at you when you least expect it to. You secretly feel like your washing has become a Gremlin, you got it wet and used the wrong fabric conditioner, now it has a personal vendetta against you. You shout “for fucks sake!” loudly, you feel better for a minute then realise that it actually didn’t solve anything and you feel a bit guilty for swearing loudly and hope that nobody heard you.
Waiting for the dryer to finish, you can’t be bothered with cooking because one handed cooking is hard!? So you grab a packet of crisps and that is your meal. Yeah, try opening that with one hand too… You sit down to watch some TV and chill for a bit. The dryer finishes you collect it and carry it back to your room.
Pillows and duvets become weirdly heavy and it feels like you’re lifting a bag of concrete and trying to put it into something far too small. Yeah, you’re trying to put on bedding with one hand onto a single bed. Now, how can you get a fitted sheet onto a mattress with one hand? It takes you an hour to get the sheet on, alone. You can’t ask for help because you think that people don’t understand, you think that these people think that it is all in your head, you are just lazy, because hey, you look like a normal functioning person outside, whatever…normal…looks…like…? You lay the duvet cover on the floor, you army crawl inside the duvet cover (YES. YOU REALLY DO THIS!) with the duvet firmly in your good hand you push the duvet into the corners and then crawl out (with difficultly because you happen to be a 19 year old, 5’3, large girl that fits into the duvet cover like a glove and you get stuck…) you button up the duvet and throw it on your bed in an unordered fashion because you’re tired and aching and frankly, cannot be arsed now.
You try put this off, but you know you aren’t well today, you start thinking about how much medication you’ve already taken today, six tablets a day, every day, for the rest of your life and today it hasn’t made you feel better so inside it feels a bit pointless. Three more, that is now nine pills today. All those chemicals. What are you doing to yourself? – you are helping yourself, not making yourself worse. Without these, you could die. Lupus can attack your heart, your brain, your vital organs, damage done, you suffer and die. Which is hard to take, but true. You think you’ll take a steroid which is for emergency use when you’re in a flare, good luck getting that blister pack open to get your pills, remember you need three pills and you only have one hand! You think screw this, throw the box at the wall, sulk a bit, then talk yourself into trying to open those tablets again. You manage to take them but the likelihood is they won’t work for a while so… (In case you didn’t realise, you’re super frustrated at yourself right now because you cannot do simple tasks and it is obviously all your fault, and that hurts your feelings!)
You need a shower, you can’t take a bath to relax, you A) might not get out of a bath with one hand and B) you don’t have a bath anyway, so good luck in your imaginary bath! You get undressed doing a vigorous wiggle to help get clothing off while you pretend you have the lovely curvy body of Beyoncé or slender stomach like Jennifer Lawrence. (If you have Lupus and have this body I envy you because weight loss is HARD with Lupus!). You wish you were the Joey Tribbiani of Friends to unhook your bra with one hand but that is really hard on yourself!? You get into the shower, and washing your hair with one hand is awkward but doable, because your hair almost touches your bum. You get out of the shower and grab a towel, urm, right, how do you wrap a towel around yourself with one hand. If you were home alone it might not bother you but you live in a shared flat with 4 strangers because you’re a student and you nor they would like that experience. Somehow you manage to get a towel on, with some weird kind of technique so you go back to your bedroom and you have to dry your hair, and brush it with one hand. It takes you a good hour. Your good arm is aching now because you’ve held your hairdryer above your head for what feels like decades. You’re pretty sure it has grown an inch in that time it has taken you to dry it.
You attempt to use both of your hands to put your hair into a bobble so that your hair doesn’t get tangled as you sleep, but you burst into tears because the hand movement of your poorly hand is simply too much and you leave your hair as it is. You are tired, you are exhausted, these tasks that maybe all together would take two hours tops on a good day has taken you from 3pm to 10pm, you just want to go to sleep. You’re not even hungry and all you ate this evening is a bag of crisps.
It takes you half an hour to get your pyjamas on, brush your teeth and take any remaining medication. You carry a drink to bed, set it beside you. You lift the duvet cover up awkwardly, slide into bed and everything is uncomfortable, you can’t sleep on the side that you want to because there is pain. You can’t sleep. You lay there in the darkness. You maybe cry a little into your pillow because you wish the pain away and nobody, not your friends, your mum or you can take that pain away. You think of how your life used to be. You know that you don’t always feel this way sometimes you function normally or the pain is bearable and you can hide it with a smile. Those rejection letters for jobs, are they rejecting all that retail experience they say that they want, that you have, because you disclosed your illness, but you can’t prove it. Those friends that you lost because they don’t understand that you’re not avoiding them, you’re just too ill to be drinking all the time, they weren’t worth your time, but you blame yourself for it. All those dirty looks you get for using a disabled door or disabled seating on a bus because you look physically well, but you’re sometimes not really stick in your head. All those theatre productions that you used to get leads in, all that singing, dancing and acting that you did with so much passion and confidence, it is all gone because you have a disabling illness. You have Lupus.
But Lupus doesn’t define me. Lupus isn’t me, it is a part of me. ONE part of many brilliant aspects of my life. I won’t ever get better, I will always have Lupus. I will always have my smile, I will always have hope, and I will always have trust that somebody out there really cares to look after me. There IS a right combination of medication for me to be treated with to make my life more manageable, in fact today I am being put on new medication. I am a Lupus warrior, and I’m not giving up.