This is Part Two of the things illness and disability have taught me. I didn’t intend to do a series, but it turns out I’ve learned way more than I realised. Which is gratifying, in a ragged, dim glow silver-lining kind of way. Also with huge thanks to everyone who has shared their own learning and knowledge.
NB, for those who don’t know, Spoonie is a term some people with chronic illnesses or disabilities use to refer to themselves. It comes from Spoon Theory, a method of communicating how your illness or disability effects you.
One of the main things I battle with my illness is fatigue. Like complete, bone-melting, face-splitting yawns, unable to speak fatigue.
That makes it incredibly hard to do basic things like take care of myself, my house, my relationships, my work… Basically, all the things I need to do to maintain my health. Lovely little catch 22.
So I’ve devised some ways of keeping on top of things to the best of my ability. Some of these are theories, and some are practical shortcuts.
If you’re here reading this, I hope it’s because you’re looking for this kind of thing, because there’s nothing worse than unsolicited advice. And, obvious disclaimer: this is stuff that works for me (sometimes). I don’t speak for anyone else. I’m never going to tell you what to do. I’m just sharing because, as I said in the first post on this topic, it’s stuff I wish I’d known long before now. So here goes.
Pick your battles
I’m kind of an angry person. (I can hear several of you laughing). Yep. It’s not something I really like about myself. A lot of it has to do with being pissed off at how my illness has taken over my life, and a lot of it has to do with the fact that the world is a bit shit.
It’s hard not to take all of that on. But I’ve learned how much anger costs me. Sometimes, it can be a good driving force for getting shit done. And other times, it just wipes me the fuck out. There’s a lot of truth to that saying about choosing the mountain you die on. For every action there is an equal and opposite reaction, and however much energy you spend on anger, you’ll pay for it. So the fight has to be worth the fall.
Take advantage of good days
Other people might tell you not to do this. They will tell you about pacing yourself, and the “boom and bust cycle,” and I’m not going to say that those things aren’t true. But what I have found is that it’s absolutely vital for me to do things when I am having a good day, and to rest when I’m having a bad day. And that may mean pushing myself a bit on good days. I’m ok with that. I would rather push myself a little further on good days, and allow myself to rest a little more on bad days, than spread it out. Because trying to do even a little bit on bad days can suck. And doing lots when I feel good makes me feel awesome.
So don’t feel guilty about letting housework pile up or whatever. Rest when you need to. And when a good days comes, then do it.
Let others help
For god’s sake, let others help. (I’m swearing at myself here, because I still can’t seem to learn this one). They want to. It really sucks seeing someone you love struggle. It’s frustrating as hell when they won’t let you assist.
Obviously, there’s caveats and grey areas to this. Sometimes, it’s really important to your sense of self-worth to do things for yourself, even if you’re going to pay for it later. Sometimes, you need to push yourself to find out what your limits are.
But a lot of the time, something that’s going to hurt you, or take you hours, can be done by someone else much more easily. And they will feel happy that they were able to help, because there’s so much they can’t do. They can’t take your pain away. But they can give you a ride to the doctor. Or make you dinner. Or take you to swimming or physio or the grocery store.
(The next step to this is not just letting others help, it’s actively asking for it. But that’s like level five ninja stuff and I’m not there yet).
The difference between Rules and Guidelines
This might not be so relevant if you don’t struggle with perfectionism or PTSD like I do. But for me, learning the difference between what I considered Rules, and what could be Guidelines, was a big step forward in coping with my illness.
You could call this Needs versus Wants. Your Must-Haves versus your I-Can-Live-Withouts.
Whatever terms you want to use, it’s about knowing what you really need, and what you can learn to let go.
I’m not good at letting go. I like to have everything just the way I like it. But when you’re exhausted and in pain, that’s not always possible. So I ask myself, for example: is it a Rule that my sheets have to be changed every Sunday, or is it a Guideline? Is it a Rule that I need to reply to this email today? Is it a Rule that I do this washing now, or can it wait? This question allows me to relax around things just enough so that I don’t wreck myself over every little thing.
-You know what’s great? Smoothies. And milkshakes. Cos you can fit a whole lot of nutritional shit in them, and they are easy to eat. So if you can’t fix a whole meal, whiz up a banana and some peanut butter and some yoghurt. A stick mixer is a good investment, then you don’t have to clean a whole blender.
-Drinks like Complan are good too. Not to replace your diet, but just to make sure you’re getting enough of all the vitamins and shit. You can add the powder to a smoothie.
-MICROWAVES. Did you know you can microwave a whole ear of corn, then just peel it and eat it? You probably did, because you probably don’t have a hippy for a dad and so you grew up with a microwave. (I love my dad. I also love my microwave). Most vegetables can be cooked in the microwave. The frozen pre-cut kind are the easiest.
-Snack. If you snack a lot, you can keep your energy consistent, and you don’t have to make as big a meals either. Have a snack drawer by the bed so you don’t even have to get up. (I have one. Don’t ask me what’s in it).
-EGGS. Eggs go in the microwave! They’re your friend.
I struggle with this because I am extremely particular about cleanliness. Some things I do:
– Wash dishes in the morning, because at night it hurts too much to stand over a sink
– Sweep instead of vacuum when I can because vacuuming huuurrts
– Hang clothes on a clothes horse instead of the washing line, because reaching over my head sucks
– Having said that, one satisfying thing to do while you’re sweeping is sweep the cobwebs off the ceiling. That way when you’re laying in bed they don’t annoy you. (Maybe that’s just me).
– Housework is an Ask For Help area. Shortcuts include ones where you involve other people to make the job quicker and easier.
It’s kind of hard to write this one, because self care looks different to everyone. For me it includes microwaved vegetables and a questionable snack draw. It also includes:
– Making sure all my medications are lined up by the bed so I can take them straight away when needed. A shortcut here could also be a pill sorter box.
– A checklist of prescriptions pinned on the board so I know when I need repeats ahead of time
– Hot water bottle and/or wheat bag and/or electric blanket
– Self care for me can include not looking like a zombie even though I feel like one. Makeup is a minefield for me. I never learned to do it properly. But I’ve figured out what is easy to apply and makes me look ok: Mascara, bronze eyeliner (easier and quicker to apply than black, and more forgiving in that it doesn’t enhance dark circles, and it doesn’t look terrible if the lines aren’t perfect because you’re weak or shaky or whatever), light blush so I don’t look like death warmed up, and lip gloss. I don’t wear foundation most of the time, which is good because I don’t really know what the difference is between that and concealer and bb cream and highlighter and whatever else there is.
– For days when washing your hair is too much: use dry shampoo and leave in conditioner. Or just tie it up.
That’s all I’ve got for now, but if you’ve got things to add, please let me know. It was really great that people did that with Part One of this. Crowdsourcing survival is just another shortcut, I guess.
EDIT: Make sure you check out the comments below, there’s lots of great ideas from others.
These are great tips Sarah! Your first post was excellent in giving a holistic view of dealing with the big issues Chronic Illness/Pain causes in your life. This one is great in more practical steps of maaking day to day living a little easier. The rules/guidelines is a great tip and one I’m going to take on. Thanks for the posts, spending your time and spoons to do them is appreciated.
Some of my spoonie life hacks are a stool in the shower and lowering the shower head (if you have one that you can do that with) so I don’t have to stand in the shower but can still do all of the things. For days when there aren’t even enough spoons to shower I use facial wipes to get some of the oil off my face (which helps stop my face from breaking out because it hasn’t been washed as often as it should) and as an added bonus it makes me feel less gross. I wear a clinical protection stick deodorant which means that if I don’t shower for a day or two then I don’t stink. When I sweep my floor I use one of those microfibre swish things where you just push it around because it doesn’t take as much effort as a regular broom. An added bonus is that it picks up most of the crap so you just un-velcro it from the end and shake it into the bin. I haven’t mastered microwave eating yet but I love the frozen mac & cheese meals because they taste like actual mac & cheese instead of random goop. I also love frozen mashed potatoes because you can just grab a few chunks, put in some cheese and microwave for a few minutes. I have trouble with appetite at the moment so I’m still adding to my arsenal of easy to prepare/make/cook meals. I mostly live off that, cereal, toast, baked beans and takeaways. I’ve got myself a (rucksack?) bag (it’s perfect!) that I can put a little bag of things to help with spoonie life in as well as all my normal stuff, and I have a pocket where I put my small collection of medications so if I’m not home when I need to take them it doesn’t matter. It also means that if I ever forget (…I have an alarm on my phone now) to take them I can take them ASAP rather than having to wait until I get home (which is a really good thing with my antidepressants). In my little spoonie bag I have some facial wipes for on the go, a mini toothpaste and a toothbrush (for the days where I’m so exhausted I wake up, get dressed, and eat breakfast in the car while I’m being dropped off at work), and I have all sorts of other little things that I don’t need unless they’re not in my bag. I put them in one of those toiletry bags so I don’t have to dig through all the extra crap to get to the normal stuff in my bag. Another spoonie life hack: if I want to watch movies or TV I always use Netflix so if I’m too tired to finish it always remembers where I was (this is probably a common one) and I don’t have to start again.
There are a lot more things I do that I think are probably common to non-spoonies but work for me as spoonie life hacks.
1. re: anger – I take Moratoriums from politics every so often. I blacklist a few keywords, avoid news sites, and my husband and I avoid any discussion of hot button topics. It usually goes for a few days or a week, and then I feel that I can try again.
2. If you suddenly feel much worse than usual, or have new symptoms, get in the habit of checking your meds. Missing a dose can cause weird symptoms.
3. Check if your pharmacy will deliver or put your pills in trays for you. Mine does (UK) at no charge!
4. You can order these remote control outlets from Amazon. You plug your fan or heater or lamp into it, and you get a remote control to turn the thing on or off. So you’re bedridden and get hot flashes? Fan goes on – fan goes off – fan goes on – fan goes off! Mine is by Energenie and one remote control controls the fan, two different lamps, and a spare socket that we use at Christmas. I love this thing so so much.
5. I have a bed rail from Social Services to help me get in and out of bed. (Very helpful! Love it!) I then bought a phone holder meant for a bicyle, so I have my smartphone there for playing games or texting or whatever.
6. Using a stylus on the phone or using the voice activation thing to record messages – so much easier than touchscreen typing!
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A fascinating article)