Preface to the rest of my post: I don't usually discuss my medical issues in this amount of detail, at least publicly. But some of the thoughtless remarks by one poster here has prompted this response.
Thank you for posting this, because it's a great way to explain to people why I "can't just (fill in the blank)" when they ask me why I'm asking for help. There have actually been a couple of times when I've felt like crawling through the phone and slapping the social worker on the other end of the phone for these tone-deaf "Can't you just ______?" If I could just ______, I would. Don't they understand that it's damned humiliating at times to have to ask for help with things that able-bodied people find so easy to do?
20 years ago I was in the situation where I couldn't even tie my own shoes - my dad had to do it. That was just before things got so bad that I phoned my doctor and told her I couldn't cope at home anymore - I needed to go to the hospital, and she finally said yes, and she'd meet me there. I needed my dad to help me into my coat and tie my shoes and help me into the taxi when it came (ambulances aren't free here unless you're covered, I wasn't at the time, and we couldn't begin to afford it). He got me a wheelchair when we arrived at the hospital, and I finally got some of the help I needed.
This was the beginning of my official association with "the system" of various health and social services... on New Year's Eve, 2000. I'd had plans for years of welcoming the new millennium by having my favorite meal and listening to the theme from "2001: A Space Odyssey" and instead I spent it in emergency, throwing up my innards and in so much pain I could barely describe it.
I spent 5 weeks in the hospital, and during that time I finally had diagnoses for some of what had been wrong for many years, things that had been dismissed as "laziness" or "down in the dumps - just snap out of it" or "if you'd just sleep at night like normal people" (they insisted they were going to "cure" me of being a night owl, despite research that says some people's brains are just wired that way, and I come by it honestly since my dad was like this as well).
I insisted on being tested for ulcers (my doctor had told me that everything would be fine if I just didn't let myself get stressed; finally I shoved an article under her nose that related how a doctor had discovered that the real culprit is bacteria), the test was positive, and the cure was an aggressive course of antibiotics (not fun; there's a very unpleasant side effect for women) and a change in diet. But the cure made a huge difference in my life, since these attacks, along with gall bladder attacks, were extremely painful and debilitating. Imagine that there's a fire inside you and you're being attacked with very sharp swords and daggers and something else that's a constant pain and it keeps up for hours and hours and hours. It feels like you'd do anything to make it stop, and it can cause bizarre behavior. My grandmother freaked out when she saw me wandering around the back yard in the middle of the night in -20C... because that was more comfortable than being inside.
A huge issue between my doctor and me was that I'd been doing research and realized that I had many of the symptoms of fibromyalgia. Add that to the thyroid issues, the depression, and numerous other things... and she accused me of faking it. I persisted, though, and finally she sent me to a specialist in Calgary, fully expecting that he would agree with her. But surprise! He told me, "You definitely have fibromyalgia." I broke down in his office and cried, from relief of finally being believed. This had been going on for years, I'd been trying to convince my doctor something was wrong, she kept insisting there were no tests for it, and my research indicated otherwise.
Keep in mind that this was
years after I had to stop working, since the chronic fatigue, constant pain, and aftermath of getting my arm hit by one of those automatic doors in a grocery store (I was exiting at the time that an employee decided to enter through the exit and fiddled with the door to allow herself to do that)... anyway, this resulted in being unable to type, unable to write, even unable to press down on a key on the computer or my organ. I couldn't even hold a pencil, because it hurt too much. I had to retrain myself to print, and then to write - it hurt - a lot - but I decided I would not allow myself to be unable to write. My writing isn't as good as it used to be and sometimes my fingers just freeze up and won't move right. It's hard to hold a pen or pencil properly, so I can't write for as long a stretch as before. But I can still do it, and that's a win. It's a win that allowed me to finish NaNoWriMo last month because my computer was acting up and I didn't want to give up halfway through the month so I did the rest of the story in longhand on looseleaf. My typing skills aren't as good, either. Most of my posts are proofread several times and corrected before they're submitted.
What all this did to my social life was basically to nuke it. When you become chronically ill, you find out who your real friends are, and it turned out that I had friends as long as I could do the mundane paperwork for the clubs and societies, host meetings and parties, do the books and media liaison for the SCA group, and when I tried to explain that I couldn't anymore, I was told, "Oh, just snap out of it".
Funny thing about depression... when you get that diagnosis, the people around you take it as a personal insult. "What have YOU got to be depressed about? Don't I do enough for you?" is a common set of questions asked in a resentful tone. And when it came to mentioning the p-word (psychiatrist) to my uncle, it was, "What do you need with one of those? Only crazy people need those, and you're not crazy, are you?" It was easier explaining brain chemistry to my dad - with his Grade 8 education - than it was to my uncle, with his high school education.
Many years ago I used to get really frustrated with my grandmother when she wouldn't commit to something, even the next day, saying, "I don't know how I'm going to feel."
Now I understand why she would say that. I don't know how I'm going to feel 2 hours from now, let along 2 days, or 2 weeks or a month or a year. I guess you have to actually be in the situation to understand that there's only a small, finite amount of energy and you have to make the most of it. I plan efficient routes even in the apartment, figuring what needs doing along the way between one room to another so I don't need so many trips. I am absolutely dreading the coming move, as I'm going to have to pack and move my entire book collection, clothes, dishes, penguins, computer stuff, and that doesn't even begin to cover the furniture. Thanks, upstairs neighbors. I really appreciate this. Not.
That just seems like a cop-out. I understand you have multiple health issues, but cooking some pasta and sauce isn't like making a Moroccan beef tagine or pork chops with fruit compote. A small saucepan to heat up the marinara sauce (which involves opening a can) and a normal sized saucepan to boil water for some pasta, finished with pouring the pasta pan into a collander. If you want to avoid an oven to reheat frozen meatballs, a quick nuke and throwing them into the marinara sauce should do the trick.
Box of pasta is less than a dollar, a large bag of frozen meatballs runs about $5 at the grocery store and store-brand marinara sauce is $3, so let's make it $10 for Vancouver being expensive. Out of that you can easily get three decent meals for less than what I see frozen dinners going for; and carrying all that back to your apartment seems easier than multiple frozen meals.
Nothing complex was suggested - putting two small pots on the stove to reheat some sauce in one and boil water in the other does not require manual dexterity. If your mobility/fatigue is limited to the point that you are putting something you don't even like in the microwave because putting two small pots on the stove comprises an insuperable obstacle, I genuinely don't understand how you are able to live independently.
@aimee you've been posting in OT since I started posting here, and in that time I've seen you master website design, database operation, and multiple other skills along with becoming far more assertive. You've never struck me as the type to avoid doing something because it is too hard.
Wow.
It's been a long time since I read (or heard) such a pile of cow pies and tone-deaf CRAP.
I completely get why Synsensa has to ration his energy and why Aimee has trouble doing some things. When your balance doesn't work right, when arthritis is a problem, when you have nerve damage that results in simultaneous contradictory sensory information, some of the most ordinary things around you become unsafe or at least extremely frustrating. I can feel simultaneously numb and tingly, and wet and dry and I have no idea from one fraction of a second to the next which sensation is actually accurate. Even when half of one hand is numb and the other half feels like ants are crawling all over it means incredible frustration. Let me feel one or the other. Both at once is frustrating to experience and frustrating as hell to try to explain to people who have never experienced it and can't imagine it. I don't have accurate sensory input, I've got vision and balance problems - which means that for me, stoves aren't safe. It means I have a narrow vertical range of where things can be put, because ladders are unsafe.
Yes, to you, an able-bodied healthy male in his physical prime, nothing of that sort is considered complex or taxing. Awesome for you, irrelevant to me.
It has nothing to do with being "too hard," it has everything to do with having extremely limited opportunity to commit to tasks when everything has a specific cost. Can I cook? Yes. What will I sacrifice in the remainder of my day, each day, to do so? Will I sacrifice my 10-minute walk? Will I sacrifice showering? Will I sacrifice working? Will I sacrifice cleaning? I can't do them all. I can't even do half. There are many days of the year where I can't do any of it at all. So yeah, instead of cooking, I pop a freezer meal in the microwave or I make a sandwich or I order delivery. Financially smart? Nope! Healthier? Nope! Actually doable? Yes. I am personally a fan of doing things that I can do, and not trying to do things that I can't do.
Whatever, dude. Go peddle your "I don't see why you can't just be healthy and do things. I do things, so why can't you?" garbage elsewhere. Really didn't expect to have some guy start nitpicking my daily life because I complained about a meal not tasting good.
*tries to PM some pasta; doesn't work; pasta wants to stay in my fridge until I eat it*
Sorry, it won't cooperate.
Yeah, this whole judgy judgmental judgments thing isn't appreciated. I completely get where you're coming from, since I've weighed whether to make a sandwich, nuke something, or just open a can, grab a spoon, and not bother to heat it up (the canned chili I have doesn't have to be heated to taste good).
Lazy by some people's standards? I guess so. But there are days when I'd just stay in bed if I didn't have to: 1. feed the cat; and 2. adhere to a set routine of medications, which absolutely have to happen at specific times.
I've been through a patch of time when it wasn't unusual to sleep for 12 hours a day and have precious little energy to show for it. Just walking from one end of the house to the other left me drained, so I understand when other people feel the same way.
Things have generally been better than that in recent years. The walker has made all the difference in whether or not it's safe to leave the apartment. Having run out of energy in places where there's nowhere to sit and not even a wall to lean against is scary. Falling on ice or snow is equally scary, with the added risk of injury or freezing if there's nobody around to help.
But I predict things will not be so great in the next couple of weeks. Packing and moving sap anyone's energy. I guess about the only good things in this is that it happened after I finished NaNoWriMo and it's summer.
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