Today I FEEL broken. But I have a wonderful friend who I talk to online, who has been making me feel a little better able to cope. And so, I reminded myself why I started this blog: to keep myself mindful of the ways in which I can Bend and not Break.
I recently introduced said friend to the Spoon Theory, and he suggested I do a post about it here. This seems like an ideal time to do so.
The Spoon Theory can be found here.
It essentially is a way of describing to someone who is comparatively healthy most of the time what it is like to have a chronic condition. In the case of the original authour, it's Lupus, but for me it started as a way to explain the exhaustion I feel after large social events (from the dyspraxia), or why I couldn't deal with a lot of stress, or life at all really, at the worst of the depression. And now, it applies to the pain of HMS as well. The same friend suggested maybe it wasn't just spoons I needed, but knives and forks as well! That way I can have codes for days when I'm happy and neatly in my comfort zone for the day (plenty of knives and forks) but in pain (low on spoons)... or days when I'm not in much pain but something's got me down and I've got a million scary phonecalls to make (plenty of spoons, but no knives and forks)... it's a neat idea, but I probably won't catch on to it. It's enough to explain the spoon theory to every new person who asks about it without adding my own little quirks, though with certain friends who know me more closely, maybe I will.
While I'm on the subject, I want to say a bit about the community that has spring up around this wonderful Theory. I've been a regular particpant on the forums at butyoudontlooksick.com for several years, initially because of the depression I was then being treated for. It was thanks to reading around the site, talking to people and researching through links that I realised how HMS explained pretty much my entire life so far, and through reading others' stories and getting support and answers of my own got up the nerve to actually take that possibilty to my doctors. Without them, I would most likely still be suffering in silence, with no idea why I hurt and probably still getting occasionally written off sick with a scrip for cocodomol and a massage. Admittedly, a night like tonight I wouldn't turn down that scrip, but now I know what's going on, and I'm a step closer to being given back some of the bits of my life I've not been able to take back on my own. It's thanks to them, I am officially bendy, and not broken.
Tuesday, 5 April 2011
Saturday, 2 April 2011
Disabilities, Difficulties and Differences
Hoooo-kay.
Ever heard someone trying to be politically correct refer to someone using walking aides as "Differently Abled"? Or a school refer to the kid who needs a helper sitting next to him as having "Learning Differences"?
I'm going to start here with a few dictionary definitions:
Difference:
an instance or point of unlikeness or dissimilarity
a change in, or effect on a situation
a distinguishing characteristic; distinctive quality, feature, etc.
the degree to which one person or thing differs from another.
Difficulty:
task, problem, etc, that is hard to deal with
a troublesome or embarrassing situation
an objection or obstacle
a trouble, or source of trouble; worry
lack of ease; awkwardness
Disability:
lack of adequate power, strength, or physical ability; incapacity.
a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job.
anything that puts one at a disadvantage
So by these definitions, my dyspraxia causes Differences in the way I learn new things best, and Difficulties in dealing with new social situations, certain types of interactions (interviews, phone calls etc) and probably doesn't cause any outright Disabilites. With HMS, I have Differences in certain ways I'm able to move (I'm pretty flexible, not surprisingly) and see (I get double vision almost all the time), Difficulties in other areas of mobility (I can't walk for long periods of time, especially on bad days, stairs hurt my knees and hips... etc)
I wouldn't classify myself as Disabled, in general. I get up most days and go to a (volunteer) job, I go out some nights, I have physically active hobbies (which are almost all actually pretty social in nature too) and generally on the surface don't appear to be outright unable to do things. That doesn't mean they aren't hard. Half the time, the effort that goes into standing up straight and smiling at every customer in an afternoon at the shop means I go home, cuddle up in bed with the laptop and am done for the day. On a really bad day, I might feel Disabled. Everything hurts, I have the attention span of a gnat and the emotional maturity of a cocker spaniel. That doesn't make me Disabled all the time though. Yes, I'm affected by my Differences and Difficulties all the time, but the extent to which each of them is causing problems varies.
But where do you draw the line? I know someone who uses a wheelchair most of the time, who can get up and walk for a short distance occasionally, but certainly couldn't every day, or for long enough to keep up with the "normal" world. And I know plenty of people (I'm one) who sometimes use a walking stick, trekking pole or crutch to help get around, especially at the end of a long day. For me, I can go without, but the amount of pain relief I get from taking a little of the pressure off my knee means with it I can stay out longer, enjoy myself more and keep up better with those of my friends without these... now which D word do I want here?
Ever heard someone trying to be politically correct refer to someone using walking aides as "Differently Abled"? Or a school refer to the kid who needs a helper sitting next to him as having "Learning Differences"?
I'm going to start here with a few dictionary definitions:
Difference:
an instance or point of unlikeness or dissimilarity
a change in, or effect on a situation
a distinguishing characteristic; distinctive quality, feature, etc.
the degree to which one person or thing differs from another.
Difficulty:
task, problem, etc, that is hard to deal with
a troublesome or embarrassing situation
an objection or obstacle
a trouble, or source of trouble; worry
lack of ease; awkwardness
Disability:
lack of adequate power, strength, or physical ability; incapacity.
a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job.
anything that puts one at a disadvantage
So by these definitions, my dyspraxia causes Differences in the way I learn new things best, and Difficulties in dealing with new social situations, certain types of interactions (interviews, phone calls etc) and probably doesn't cause any outright Disabilites. With HMS, I have Differences in certain ways I'm able to move (I'm pretty flexible, not surprisingly) and see (I get double vision almost all the time), Difficulties in other areas of mobility (I can't walk for long periods of time, especially on bad days, stairs hurt my knees and hips... etc)
I wouldn't classify myself as Disabled, in general. I get up most days and go to a (volunteer) job, I go out some nights, I have physically active hobbies (which are almost all actually pretty social in nature too) and generally on the surface don't appear to be outright unable to do things. That doesn't mean they aren't hard. Half the time, the effort that goes into standing up straight and smiling at every customer in an afternoon at the shop means I go home, cuddle up in bed with the laptop and am done for the day. On a really bad day, I might feel Disabled. Everything hurts, I have the attention span of a gnat and the emotional maturity of a cocker spaniel. That doesn't make me Disabled all the time though. Yes, I'm affected by my Differences and Difficulties all the time, but the extent to which each of them is causing problems varies.
But where do you draw the line? I know someone who uses a wheelchair most of the time, who can get up and walk for a short distance occasionally, but certainly couldn't every day, or for long enough to keep up with the "normal" world. And I know plenty of people (I'm one) who sometimes use a walking stick, trekking pole or crutch to help get around, especially at the end of a long day. For me, I can go without, but the amount of pain relief I get from taking a little of the pressure off my knee means with it I can stay out longer, enjoy myself more and keep up better with those of my friends without these... now which D word do I want here?
Volunteering
I've never been officially diagnosed with SAD, but Mum likes to joke about how as a kid, I tended to crawl under a pile of duvets somewhere around November and ask for a wakeup call somewhere around March. These days that's less possible, but January and February tend to make a damn good effort at killing me every year, not to mention seeing me put on about a stone in weight.
This year was different.
It shouldn't have helped that I was 400 miles further North than I've ever lived, since I moved up to Scotland over the summer last year. The cold, the snow... ok snow is great when you're six, and also when you're on a skiing holiday. Snow in the city when you're trying to actually get anywhere SUCKS.
But I didn't breakdown. I'm still standing, and better than I ever have been this time of year.
Now, I have the luxury of Money From Parents, which I'm aware that most people don't. But this means that while I have legitimate pressure to be doing something they see as productive with my time, it's not the end of the world if I'm not paid to do so. Enter Oxfam. I started working weekdays at a charity shop in town in November and I'm still there. I even had a brief stint as Volunteer Assistant Manager, but that led to being so stressed and tired I'd cut down to 3 afternoons a week and still wound up yelling at someone I shouldn't have. So I'm back to regular volunteering, which suits a lot better anyway.
Some great things about volunteering:
FLEXIBILITY. This may be in part having a boss who rocks, but he's very understanding about the limitations of the volunteers. A lot of us have depressive issues, there's one or two people with Aspergers, a handful of students and so on. Calling in "tired"? Not a problem. Need to leave early? Health is more important than having 5 people in the shop. Changing working hours to fit how much you can cope with? He'll be the one suggesting it, because he's aware of what just about everyone's able to do.
GETS YOU OUT OF THE HOUSE (when you can). One of the big problems I have, especially in winter, is that nothing seems quite so enticing as a hot water bottle, the laptop in bed and maybe another cup of tea if I'm getting up anyway. I'll still go places I'm expected though, like weekly roleplaying games... or a job. As long as you treat your volunteer job as a real one, it works. Plus, if you really can't face the snow today, phone it in, job done. (see above)
MEET NEW PEOPLE. Having people around from all different walks of life, different outlooks and different reasons for being there is amazing when you're stuck in a rut thinking your own life sucks (like you're the only one who can see that blizzard out there...?) In a safe, working environment you HAVE to think about other people, and I can't talk for other shops, but ours has some really cool people in it, and I found myself wanting to get to know them better. Less time dwelling and wallowing = less SAD. There's a lot more to it than that, but it helps.
It's not just about getting through the winter though. Aside from getting all the benefits of working bar being paid, (including building up CV-boosting skills) you're genuinely helping other people beyond the face value of the physical work you're doing. Choose a charity you can really connect with if they have a shop you can get to easily. I'll admit, Oxfam doesn't quite fit that "personal level" profile for me, but on the other hand I know a lot more now about who they are and the work they do, and I'm proud to be helping.
This year was different.
It shouldn't have helped that I was 400 miles further North than I've ever lived, since I moved up to Scotland over the summer last year. The cold, the snow... ok snow is great when you're six, and also when you're on a skiing holiday. Snow in the city when you're trying to actually get anywhere SUCKS.
But I didn't breakdown. I'm still standing, and better than I ever have been this time of year.
Now, I have the luxury of Money From Parents, which I'm aware that most people don't. But this means that while I have legitimate pressure to be doing something they see as productive with my time, it's not the end of the world if I'm not paid to do so. Enter Oxfam. I started working weekdays at a charity shop in town in November and I'm still there. I even had a brief stint as Volunteer Assistant Manager, but that led to being so stressed and tired I'd cut down to 3 afternoons a week and still wound up yelling at someone I shouldn't have. So I'm back to regular volunteering, which suits a lot better anyway.
Some great things about volunteering:
FLEXIBILITY. This may be in part having a boss who rocks, but he's very understanding about the limitations of the volunteers. A lot of us have depressive issues, there's one or two people with Aspergers, a handful of students and so on. Calling in "tired"? Not a problem. Need to leave early? Health is more important than having 5 people in the shop. Changing working hours to fit how much you can cope with? He'll be the one suggesting it, because he's aware of what just about everyone's able to do.
GETS YOU OUT OF THE HOUSE (when you can). One of the big problems I have, especially in winter, is that nothing seems quite so enticing as a hot water bottle, the laptop in bed and maybe another cup of tea if I'm getting up anyway. I'll still go places I'm expected though, like weekly roleplaying games... or a job. As long as you treat your volunteer job as a real one, it works. Plus, if you really can't face the snow today, phone it in, job done. (see above)
MEET NEW PEOPLE. Having people around from all different walks of life, different outlooks and different reasons for being there is amazing when you're stuck in a rut thinking your own life sucks (like you're the only one who can see that blizzard out there...?) In a safe, working environment you HAVE to think about other people, and I can't talk for other shops, but ours has some really cool people in it, and I found myself wanting to get to know them better. Less time dwelling and wallowing = less SAD. There's a lot more to it than that, but it helps.
It's not just about getting through the winter though. Aside from getting all the benefits of working bar being paid, (including building up CV-boosting skills) you're genuinely helping other people beyond the face value of the physical work you're doing. Choose a charity you can really connect with if they have a shop you can get to easily. I'll admit, Oxfam doesn't quite fit that "personal level" profile for me, but on the other hand I know a lot more now about who they are and the work they do, and I'm proud to be helping.
The Obligatory Hello World Post
So, you've found me. This was probably by following a link on one of the messageboards I frequent, or possibly you actually know me in person and I sent you here. I imagine if you're reading this sometime significantly after 2011 there's a chance you got here from somewhere else entirely, or maybe even randomly surfed in. However your journey began, welcome, please stop a while!
There are a number of blogs about living with X condition, the problems and tribulations associated with that, which exist mostly to give good advice about how to deal with doctors, cope with bad days and generally live conscious of the illness you'll never be rid of. I'm hoping to give a more positive spin on things, and this is for my own benefit as much as anyone elses. I have a history of Depression, Asthma and various food intolerances, and now have been diagnosed with Dyspraxia and very recently Hypermobility Syndrome. But I've always been an active person, and the year or two that led to my latest diagnosis have been a hard run of becoming increasingly sedentary and run down, and I've lost a lot of the sense of being myself. In this blog I will be writing a number of articles relating to living with these conditions, with an emphasis on living. I don't have things as bad as some people I know, and I see them living to the fullest and wonder why I've let myself get so cornered and down. So this is going to by my place to track my return to the person I am inside, full of creativity, adaptability and energy, but at the same time, learning to acknowledge and accept my limits rather than ignore them and then kick myself for stupidity when I crash.
So, without further ado, on to the actual posting!
There are a number of blogs about living with X condition, the problems and tribulations associated with that, which exist mostly to give good advice about how to deal with doctors, cope with bad days and generally live conscious of the illness you'll never be rid of. I'm hoping to give a more positive spin on things, and this is for my own benefit as much as anyone elses. I have a history of Depression, Asthma and various food intolerances, and now have been diagnosed with Dyspraxia and very recently Hypermobility Syndrome. But I've always been an active person, and the year or two that led to my latest diagnosis have been a hard run of becoming increasingly sedentary and run down, and I've lost a lot of the sense of being myself. In this blog I will be writing a number of articles relating to living with these conditions, with an emphasis on living. I don't have things as bad as some people I know, and I see them living to the fullest and wonder why I've let myself get so cornered and down. So this is going to by my place to track my return to the person I am inside, full of creativity, adaptability and energy, but at the same time, learning to acknowledge and accept my limits rather than ignore them and then kick myself for stupidity when I crash.
So, without further ado, on to the actual posting!
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