Monday, January 11, 2016

Chronic illness: the rules according to Erika

So a friend recently asked me for advice on how to cope with chronic illness...well okay it wasn't that recent now. But then I wrote an article about diabetes and archery. And now this post, that I have had in draft for a few months, suddenly seems relevant. And since this topic has cropped up multiple times, here's my words of wisdom...or at least words:

1. Bugger being Superman
You don't have to be a hero just to make other people feel better about themselves
Some days you are going to feel like shit and it's okay to hate it. It's okay to be angry or sad. It's perfectly normal and there's no crime in showing you feel like rubbish. You don't always have to pretend to cope better, just so someone else has a better day. We aren't all be brave in the face of 'insert disease of choice' poster material. And some days aren't brave days no matter who you are. Your body is going to let you down. Nothing wrong with the occasional self indulgent, hissy fit or criminally bad hair day when your body won't do what it's told. All the people telling you to get over it and grow a back bone can go get their own shiny chronic disease, and sit on it, and see how it treats them. You might notice a theme to my thoughts. My theory is essentially that everyone should mind their own business (on pretty much everything). There's lots of people telling you a bunch of useless stuff about how to cope with your disease. It's yours. Cope with it how you want. What works for you is not going to work for everyone and if the well meaners were actually well meaning, they would stop giving inane advice for something they have no true understanding of. Trite words like 'chin up' and 'it could be worse' can also elicit homicidal eye twitches in the recipient.

2.Take the damn medicine
When you become mortally dependent on medication, you stop having any sympathy for folk who suffer headaches or other ailments just because they 'don't like taking pills'. As if not taking the pills somehow elevates them above us poor weak plebs who carry a pharmaceutical arsenal in our bags. One of the leading causes of preventable death in the western world is people not doing what the doctor told them. Something like 50% of all scripts never get filled and an incredible amount of people think that taking 1 or 2 tablets should be enough when they have been given a months supply. I recall a little old lady who stopped taking her blood pressure meds because the doctor had given her another script for a different ailment and she thought it was too many pills. We pay doctors a lot to do that thinking for us. If you are supposed to take ten tablets a day, take ten tablets a day. It's not a difficult concept.
We don't always get it right.
“You know what they call alternative medicine that's been proved to work? - Medicine.” - Tim Minchin.
If it doesn't come with a stack of peer reviewed, scientific, research from reputable Journals, don't take it. People pushing alternative remedies are stupid, crazy, or trying to kill you. Possibly a combination of the three. You don't ask the checkout chick at burger king to change the oil on your car or the postman to fix your archery gear. So don't ask the town monkey or a friend of a friend, with a degree in scientifically unproven drivel, for advice on your health. Ask an expert. Like any part of the human race, doctors can be morons too, so if you don't trust them for some reason, ask more than one and don't ask google unless you actually know enough to understand what you are reading.You'll end up with a fatal case of something no one ever heard of and massive hypochondria on top of what ails you. But!.... If taking weird unproven remedies makes you feel in any way better...nothing wrong with the placebo effect. It's scientifically proven to have benefit. Just don't stop the proven meds and check with your real doctor if there's a chance your weird, witch doctor, hocum might interfere with your actual therapy. Some 'natural' therapies might actually kill you and if you're ingesting something stolen from some poor endangered animal, then I hope it gives you a nasty rash too.

3.It's okay if you think it hurts
Your pain is not less real just because some jerk says it doesn't hurt. I have been told by endless nurses and doctors, and even diabetics, that taking insulin and blood testing doesn't hurt. Like lying about that stuff will somehow make it less ouchy. One of my favourite stories was a nurse, who had to do a week of 'being a diabetic' as part of her training. She said she had never understood her diabetic husband so well as she had after a week of endless needles and blood tests. But even then, if it isn't your body, you don't really know. My dad barely notices the injections and barely bruises ever. I'm a walking bruise. I have blue and black bruises everywhere and some injections hurt like crazy and some not at all. People who tell you it never hurts just haven't been stabbed enough. I usually offer to stab them.

4.Take time out
Stuff stresses us. Lots of stuff. Chronic illness causes stress. I highly recommend meditation. 10 minutes a day of just focusing on breathing and nothing else can really make a difference to the overly busy brain. Or kittens. But I recommend the cute and fluffy for most situations. If you aren't allergic, you need a kitten/puppy/hedgehog/preferred cute and fluffy.

Cute and fluffy makes the world better.

5. A really awesome friend to caffeinate with
Regularly. I don't care if you don't caffeinate. We still call it grabbing a coffee when you don't drink coffee. So go somewhere civilised, drink a hot beverage, eat a something and chat about whatever. This does not include drinking instant while you text pretend friends on fb. Conversation with a real live person, who isn't part of your umpteen hospital visits, is crucial to not wallowing in misery.
Caffeination with conversation.  

I'm a fan of hugs. I highly recommend hugs from the lovely Miss Degn of Denmark (aside from boyfriend/girlfriend/family)...but perhaps you should find your own huggable persons. And recall personal space issues before hugging said persons. Not everyone thinks hugs are fan worthy. But if you are one of those...well my lucky, best friend advice is to learn to like hugs from at least one person/kitten/puppy.....
Hugs <3
Some months after I was diagnosed with diabetes, I heard comments like 'still??' and 'isn't she over it, it's been months' etc News flash people. Chronic illness means it isn't going away and may get worse and more complicated with time. So about the time I was being introduced to big scary needles on a daily basis (after months of struggling with tablets and impossible diet restrictions and endless tests), the peanut gallery was busy bitching that I should be used to my condition by now. It took two years to get over needle phobia. I used to stay up all night because I didn't want to take my night insulin. I met a little old lady who told me she had been diabetic since she was little and she still cried sometimes when it was all too hard. I met another who had been diabetic for 15 years and never had a single day of control. The first day she achieved actual control of her blood sugar, I was privileged to witness her tears of sheer joy at achieving something most people never think about because it's as automatic as breathing...Fifteen years....And I met a guy who was only about 40 and had never found that control. He had the biggest freaking scar (which he showed me in the middle of a pub while explaining why he doesn't drink beer anymore) I ever saw and a nice, shiny, slightly used, new set of kidneys, and a pancreas to show for it. He said 'take care of yourself'.
Some of us might be less patient than others. Hug them too.
8.Talk about it.
There's a weird fashion in the world to hide what ails ya. I'll admit to finding it rather astonishing. People are actually embarrassed by diabetes, depression, name it. Seriously... of all the things that I've been embarrassed by in my life and of all the things I've thought people should be embarrassed by, it never occurred to me that being ill was something to be ashamed of. My dress blowing up around my ears when I had my hands full with a coffee tray.... that was pretty embarrassing. Walking around all day with a seed stuck on your front teeth, baby photos, singing in public, shooting the wrong target at a world event...Can't say diabetes ever embarrassed me even half as much. If other people are uncomfortable, that you have a chronic illness, it's their own weird little problem. Let them stress about it.

Shooting the wrong target twice...way more embarrassing than diabetes. Trust me.
9.That's all she thinks about.
When your body doesn't work the way it is supposed to and your life depends on you getting certain things right, you can seem rather preoccupied by it. When I'm ticking every box and doing everything right my day runs like a diabetes check list. Wake up, check blood, shower, count breakfast carbs, take insulin, eat, go to school, check blood, count carbs, insulin, lunch, more school, check blood, more school, check blood, training, check blood, count carbs, insulin, dinner, homework/tv/whatever, check blood, insulin, insulin adjustment... and possibly a 3am check blood if things are awry and an half hourly check blood if I'm in competition. So given how many times a day my disease crops up in my routine, one can be forgiven for thinking about it more than people with a functional pancreas do. If you had to respond every time your pancreas needed to do something, you might think about it a bit too. Does it make me less able to do other stuff? No. Just means I might mention pancreas a bit more often.
Some days are just annoying.

10.Everyone needs a hobby.
A lot of people waste a lot of time thinking about the stuff they can't do. Like drink the maple syrup (I'm still laughing about a certain Canadian who gave me a whole bottle), fly commercial airliners, or organ donation. I am completely baffled by the need of so many in the population to spend time every day contemplating what they can't do. Navel fluff is surely more fascinating. So stop pondering the cruelty of life over what you can't do and start putting some time into something you can do. Or maybe even try the 'can't'. It's quite often a 'can't' because someone said so rather than because you tried. Do you know why I spend so many hours shooting arrows? It's because I'm really crap at knitting, ball games, riding bikes, dusting, chess, endogenous insulin production.... the list is endless. See how much more archery I get done when I don't waste energy on all those pointless things? And most of those pointless things, I was crap at before diabetes.
Remember how much I suck at riding bikes? That is not due to diabetes.
11.Remember to love someone.
And at the end of the day, remember to appreciate your nearest and dearest. They are there for you, even on your bad days. Hugs and caffeination and the person who turns your electric blanket on.... all make the world a much nicer place :)