Hey guys, sorry it's been a while since I last posted. Life has been a little more hectic than usual and my recent diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) has further complicated things. I've always had problems with very low blood pressure, but the dysautonomia, I'm told, was likely brought on by the surgery and all that went with it, including rapid and dramatic muscle loss. I'm still learning about it and I'm working hard to understand it as well as I can, but this is a new condition for me, so it's taking a while for me to find my feet with it -- and yes, I realise the irony of that statement =P
I've been thinking a lot about my past and the experiences I've had with people since my EDS diagnosis -- mostly, those during school. I wound up dropping out of my final year (Yr. 12, in Australia), for several reasons, but the main reasons were that my EDS was making it impossible for me to complete my assignments, let alone my exams, and that I had developed an eating disorder (Anorexia Nervosa) and the stress of school and the EDS was making it worse. I have also since wondered about the statistics on eating disorders in people with EDS, but that's a whole post all on its own, lol.
I remember specifically two physical education teachers and a music teacher. One of the physical education teachers, Mrs. Bushel, was wonderful. She taught me in Yr. 7, when I was 12 (the final year of primary school, here). This was five years before my EDS diagnosis and we had no idea what was wrong, at this point. She was the first person to ever ask me what I felt comfortable doing and she NEVER pushed me. She saw how badly I wanted to participate and to not be the child sitting on the side lines. She saw how much it bothered me, the way the other kids constantly demanded to know why I didn't have to do certain things and then often didn't believe me when I told them that I couldn't, because I had no real explanation as to why. I have often thought of trying to contact her and thank her, because that was easily the most bearable school year of my entire life where my EDS is concerned, but I'm not sure how to go about it. I remember, one day, she was teaching us about stretching and measuring how far we could stretch. One stretch involved sitting with my legs out straight and my feet against a wooden box that had a ruler nailed to the top and stretching as far as I could, with my hands on the ruler to measure how close I could get to my toes. I couldn't even reach the tip of the ruler, because my hamstrings and calves were so tight. I remember Mrs. Bushel remarking on how it was interesting that I could stand with my knees bent backwards, but couldn't touch my toes, and suggesting I mention this to my doctor at my next appointment. She was wonderful =]
The other physical education teacher was a VERY different story. Her name was Mrs. Stock and, when she was young, she had a deformity of some kind, affecting her legs. She had major surgery on them in her teens and went on to become incredibly athletic, through years of hard work. While this was definitely commendable, I believe that it was part of why she seemed to think that everyone could overcome their physical barriers through exercise and if you were in pain, it was simply because you were unfit. She once made my then VERY overweight friend play basket ball on a 42C day in an outdoor, unshaded court. The poor guy was lucky he didn't have a stroke. She taught me when I was in Yr. 8, at age 13 (the first year of high school, here) and it was absolutely awful. My parents removed me from the school at the end of third term, for academic reasons as well as because of her mistreatment of me, and I have never been so relieved to leave a place in all my life. I remember that at the start of the year, my parents sent a letter to her through the school, explaining that I had problems with my joints and that we were currently pursuing diagnosis, but didn't yet know exactly what was wrong. The letter said that she was to go by what I said I could and couldn't do, because this differed from day to day. It also said that I was not able to run, nor was it safe for me to try, but that I could walk, so there may be activities that I could do at a walk, instead. So when she became frustrated with me constantly saying I couldn't do what the rest of the class were doing (relays, hockey, netball, dodgeball, basket ball, tennis, cricket, etc.), she had me walk laps of the ENORMOUS school oval (playing field) for the entire 90 minute lesson, while the rest of the class were in the gymnasium doing some basic gymnastics, meaning that I was also unsupervised. She also kept sending other students out to check on me and make sure I was still walking -- students whom she knew disliked me. By the end of the lesson, I was in so much pain that when I sat down, my legs cramped up and I was stuck there for nearly half an hour. I had to wait for my legs to ease up before I could set the bones that had come out of place in my feet. When I took off my shoes to do so, she told me off, saying that I was her responsibility and if I stood on something with no shoes on, she would be punished. She also refused to believe that I had anything out of place in my feet.
I suppose that some part of her thought she was teaching me something or toughening me up, which is funny, in a grim sort of way. Little did she know I was probably tougher and stronger then than she could ever be. As was my friend, Stacey, who'd fallen out of a very tall tree as a small child and suffered spinal damage. She could walk, but had a lot of pain and running was particularly painful for her. She also had bow legs, which caused her some considerable knee trouble while she was still growing. Mrs. Stock tried to make her do the same thing as she'd made me do. Stacey sat down on the ground and quite simply refused to move! We used to joke that Stacey was born to be Prime Minister and here it really showed. This tiny, 13-year-old girl, with one very angry, intimidating adult standing over her, absolutely refused to do it and said that, if Mrs. Stock didn't like it, she should call Stacey's parents, because she was sure they'd be perfectly happy to explain why their daughter's long-term health was more important to them than forcing her to complete menial physical tasks, purely for the satisfaction of a sports teacher. Stacey was also always very articulate XD I wished, at the time, that I'd been able to stand up to her the way Stacey did, but I was a shy child and whenever I was faced with confrontation, my brain would fog up and I would shake uncontrollably and sometimes even pass out.
Needless to say, my parents were absolutely outraged by the way Mrs. Stock treated me and made several formal complaints about her, but here the private school system has a definite knack for sweeping things like that under the carpet. I have often thought about writing a letter to Mrs. Stock, explaining the diagnosis I received when I was 17 of Ehlers-Danlos Syndrome and diplomatically pointing out that she is in a very good position to be able to spot EDS in young students...but, once again, I'm not sure how to go about it. I'm also not sure that I could write such a letter without becoming angry and turning it into a rant, which would ultimately achieve nothing.
The music teacher I mentioned was a Mr. Vine. He taught me when I was 17, during the year I got my diagnosis (which happened at the end of first term). I play the piano and drums, but naturally the pain in my hands and wrists (as well as scoliosis) made both of these difficult. I took music class because I love music and I always gave it my best. But if it was a choice between being able to write my in-class assignments for English Literature, Chemistry, History or Art (my four main subjects -- music did not count towards my final grade) and being able to play piano/drums for his class, of course my major subjects would win. But the school required that I take one optional subject and wouldn't allow me to drop music when my health worsened. Every single lesson, he would ask me, in front of the entire class, to play something on piano. Almost every single lesson, after about halfway through the first term, I had to say no, because my hands and wrists were too sore. He would roll his eyes in a very over-the-top way and make some remark to the class about it. I had drum lessons every Friday after school and he would always demand to know why it was that I could play drums in my lessons, but could never play piano in his class. The most important reason was that my fantastic drum teacher, Mr. Corveia, was willing to go at my pace and understood that, although my mind could race ahead and I learned quickly, my body was holding me back. I've also always found that the impact on my joints from playing drums is actually quite minimal, so long as I'm using the right sticks, because I do hold them quite loosely and the rebound from light-weight sticks creates its own momentum. My physio also used drumming to teach me better body awareness and muscle control in my arms and shoulders, and I saw an occupational therapist who helped me find new ways and angles from which to hit each drum, so that I wasn't hyper-extending my joints or hurting my hands. Piano, however, requires me to tense my whole hand, while also stretching or even hyper-extending it (I have small hands) to reach across the keys, and press down with each finger, creating pressure and tension in those delicate little finger joints and often forcing them to sublux or dislocate. When I tried to explain this to him, he scoffed and rolled his eyes and told me he knew my game. Apparently, EDS is a game, now. And here I was, thinking games were fun =P *Rolls own eyes*
I have had problems with many people over the years, but for some reason, Vine and Stock stand out more than any others in my memory. I've worked for people who treated me like a hypochondriac and even threatened to fire me if I "chucked another sickie" (for the record, that was when I had Swine Flu), or if I couldn't do all the tasks that the other employees could, even though these were "equal opportunity workplaces". At the risk of sounding very cynical, I do not believe in "equal opportunity workplaces", apart from places actually run by/for people with disabilities. It's sad and I hope it changes -- that's what we're all working for, among other things -- but at the moment, we're a long way off.
Has anyone else had a similar experience at school, where your health has been made second priority to the unyeilding demands of the system and its minions? Or positive experiences, with one-in-a-million teachers?
*Lecture, lecture, bitch, bitch, caffeine, caffeine, pressure, pressure, grades, grades, grades and say goodbye to your health; blah, blah, blah, got your reputation, stats and figures, you can stick your TEE! Everybody sing! Are you mother fuckers ready, for the new shit? Stand up and admit, tomorrow's never comin'! This is the new shit! Stand up and admit!* <3
Monday, October 11, 2010
Monday, June 28, 2010
Progress!!
I can now, while sitting on the sofa with my feet on the floor, lift my left foot off the ground by a whole two inches, w00ts! ^_^ I've been doing that in lots of ten reps, holding for three seconds each time, throughout today. It's quite painful, but feels amazing to be able to actually work the muscles in my knee =] Y'know that acid-in-the-muscle, glorious feeling when you know you've pushed your muscles far enough to make a difference, but not far enough to do damage? Yeah =]
Meanwhile, since doing so little during the day inevitably results in an inability to sleep, I've been watching a whole lot of Scrubs and House, lately =] It's occurred to me that there's probably something significant about my love of (good) medical shows -- even to the point where I prefer Silent Witness to Morse -- but meh ^_^
I'm still hanging out for House to do an episode about EDS -- I mean, the possibilities are almost endless, even so far as the FMS/EDS cross-overs -- but at the same time, I'm worried they'll get their facts wrong and end up misrepresenting EDS =/ That would sort of defeat the point in me wanting them to cover it -- that point being to raise awareness. But I suppose, either way, so long as they get the basic symptoms right...?
Meanwhile, I'm no longer the only one going stir crazy. Pippa (our little Brussels Griffon) isn't getting her usual two walks a day at the moment, because of the weather. She really does need them, too -- she has an insane amount of energy, haha. Every time a cat moves, at the moment (we have two), she leaps off the sofa barking. The funny part is that she fails at running across tiles and just sort of skitters until she lands on her butt and sort of slides across the floor, still barking XD
I know they say not to mock the afflicted, but I am the afflicted, so =P Hehe.
<33 Kitty
Meanwhile, since doing so little during the day inevitably results in an inability to sleep, I've been watching a whole lot of Scrubs and House, lately =] It's occurred to me that there's probably something significant about my love of (good) medical shows -- even to the point where I prefer Silent Witness to Morse -- but meh ^_^
I'm still hanging out for House to do an episode about EDS -- I mean, the possibilities are almost endless, even so far as the FMS/EDS cross-overs -- but at the same time, I'm worried they'll get their facts wrong and end up misrepresenting EDS =/ That would sort of defeat the point in me wanting them to cover it -- that point being to raise awareness. But I suppose, either way, so long as they get the basic symptoms right...?
Meanwhile, I'm no longer the only one going stir crazy. Pippa (our little Brussels Griffon) isn't getting her usual two walks a day at the moment, because of the weather. She really does need them, too -- she has an insane amount of energy, haha. Every time a cat moves, at the moment (we have two), she leaps off the sofa barking. The funny part is that she fails at running across tiles and just sort of skitters until she lands on her butt and sort of slides across the floor, still barking XD
I know they say not to mock the afflicted, but I am the afflicted, so =P Hehe.
<33 Kitty
Sunday, June 27, 2010
Brrrrrrrrr!!
Okay, I know I'm a wuss for saying it, but it is freezing here! During the day it's been around 15-17*C the last few days, which is fine, but the last couple of nights it's dropped below zero, which is quite rare here in Perth. The worst part is that, since I have to sleep with my leg in a splint, I can't wear pyjama pants to bed, just a nightie and a jumper (with the hood up, lol). So no matter how warm the rest of me is, my legs are still cold!
But I'd still rather deal with the cold than the heat and humidity =D At least it's easier to defend against =] I've spent most of today rugged up on the sofa with my little dog Pippa keeping my feet warm.
Unfortunately, all this time spent in doors means I'm at the mercy of any cold that my dad, mum or sister brings home, lol. I've been taking Sudafed (with pseudoephedrine) every day, trying to keep it at bay, which is causing some major GI issues. I have reflux and nausea every day as it is, but the Sudafed makes all that so much worse =/ I've had to double my doses of Nexium and Motilium and my symptoms are still not completely under control. But then, my insides will hate me so much more if I end up on antibiotics, so I'm determined to push through with the Sudafed, lol.
My dad took me to Wanneroo Markets, today, which was great =] I'm down to using just one of my crutches to get around and I can hobble a bit without it, but because the joints of my other leg are so unstable, I try not to, in case I dislocate something and fall. It's almost happened several times -- like one of my hips or my right ankle have "gone" and I've just managed to catch myself.
I was present-hunting for my friend Jonesy's birthday and didn't find what I was looking for, but it was so good just to be out =] Even if my back and right shoulder/arm are complaining loudly, lol.
Hehe, we also bought a dog coat for Pippa, today. She's been shivering, constantly, but she hates her coat so much XD She won't do anything while she has it on, just stands there sulking, poor thing. I hope she'll get used to it -- she gets walked quite early, while it's still cold, and she'll need it as the weather gets colder. It's amazing to think that we're only in the first month of winter and it's already this chilly!
Anyway, apart from the dog chasing the cat round and round the coffee table every so often, life is pretty boring at the moment, lol, so I'll wrap it up here =]
Thanks for reading ^_^
<33 Kitty
But I'd still rather deal with the cold than the heat and humidity =D At least it's easier to defend against =] I've spent most of today rugged up on the sofa with my little dog Pippa keeping my feet warm.
Unfortunately, all this time spent in doors means I'm at the mercy of any cold that my dad, mum or sister brings home, lol. I've been taking Sudafed (with pseudoephedrine) every day, trying to keep it at bay, which is causing some major GI issues. I have reflux and nausea every day as it is, but the Sudafed makes all that so much worse =/ I've had to double my doses of Nexium and Motilium and my symptoms are still not completely under control. But then, my insides will hate me so much more if I end up on antibiotics, so I'm determined to push through with the Sudafed, lol.
My dad took me to Wanneroo Markets, today, which was great =] I'm down to using just one of my crutches to get around and I can hobble a bit without it, but because the joints of my other leg are so unstable, I try not to, in case I dislocate something and fall. It's almost happened several times -- like one of my hips or my right ankle have "gone" and I've just managed to catch myself.
I was present-hunting for my friend Jonesy's birthday and didn't find what I was looking for, but it was so good just to be out =] Even if my back and right shoulder/arm are complaining loudly, lol.
Hehe, we also bought a dog coat for Pippa, today. She's been shivering, constantly, but she hates her coat so much XD She won't do anything while she has it on, just stands there sulking, poor thing. I hope she'll get used to it -- she gets walked quite early, while it's still cold, and she'll need it as the weather gets colder. It's amazing to think that we're only in the first month of winter and it's already this chilly!
Anyway, apart from the dog chasing the cat round and round the coffee table every so often, life is pretty boring at the moment, lol, so I'll wrap it up here =]
Thanks for reading ^_^
<33 Kitty
Wednesday, June 23, 2010
Open Letter to Those WITHOUT Ehlers-Danlos Syndrome (and for those with it)
My friend Kari found this on a Norwegian forum, but the author's name was not given. Because I'm a little OCD, I've corrected a few grammatical mistakes, but apart from that, it's exactly as it was when Kari posted it on Facebook =]
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Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
...These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones? If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. EDS has taken so much away from me. I can no longer do many of the things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.
Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc., and most of the time I'd still like to hear you talk about yours, too.
Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who have to deal with the consequences. I still want to be part of the "gang". Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else, but I can bring the hot chocolate and watch.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth, so even if I was only diagnosed recently, I have been suffering from this since I was born). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure. Only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability from EDS move around. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee. Who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away, either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on. It applies to EVERYTHING that I do. Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own?) but they are not caused by Depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it, then I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something more exciting. EDS does not forgive its victims easily.
Please understand that I can't spend all of my energy trying to get well from EDS. It is incurable and genetic, so unless I can change my genes I cannot change my disease/disorder. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.
As you can see EDS really sucks.
Finally, please remember that I am the same person I was before I was diagnosed with (or started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh and I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
(Author Unknown)
-----------------------------------------------------------------
Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...
...These are the things that I would like you to understand about me before you judge me...
I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones? If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.
I am angry. EDS has taken so much away from me. I can no longer do many of the things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.
Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc., and most of the time I'd still like to hear you talk about yours, too.
Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who have to deal with the consequences. I still want to be part of the "gang". Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else, but I can bring the hot chocolate and watch.
Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth, so even if I was only diagnosed recently, I have been suffering from this since I was born). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure. Only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability from EDS move around. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee. Who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away, either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on. It applies to EVERYTHING that I do. Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute. If this happens, please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own?) but they are not caused by Depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it, then I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something more exciting. EDS does not forgive its victims easily.
Please understand that I can't spend all of my energy trying to get well from EDS. It is incurable and genetic, so unless I can change my genes I cannot change my disease/disorder. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.
As you can see EDS really sucks.
Finally, please remember that I am the same person I was before I was diagnosed with (or started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh and I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
(Author Unknown)
Tuesday, June 22, 2010
Introduction
Wow, it's been so long since I started a new blog =] The last blog I wrote was on Xanga, haha -- oh man, that makes me feel old =D
Welcome to my Ehlers-Danlos Syndrome blog ^_^
I have the Hypermobility type, with Classical features (skin and organ tissue problems). Thankfully, my heart is structurally okay, and I feel like I just missed the Titanic with that one, lol.
I live in Perth, Australia, which just happens to also be home to Dr. Kevin Murray, a fantastic rheumatologist who specialises in treating EDS. He diagnosed me when I was 17 and has been treating me ever since. I also see Natalie Bennett-Bremner, a physiotherapist who treats EDSers and REALLY knows her stuff. She held a seminar for medical professionals and sufferers in Sydney this month and the response so far has been awesome. Please look both of these people up if you're interested =]
At the moment, I'm recovering from knee surgery. Nearly 3 years ago, I fell while working at McDonald's and landed on my left knee, sending my kneecap half way up my thigh. I set it myself and my workplace handled it all really badly. It took them over 9 months to pay me my lost wages and their insurance company has been trying to get me to settle ever since. I'm absolutely not going to, since it took my (excellent) orthopedic surgeon, Anthony Geddes, all this time to decide on a lateral release with tibial tubercle transfer as the best option, after exhausting all other options, because of the risks involved -- along with the possibility that it may not even work.
So far, I'm healing well and the surgery was a complete success. He actually seemed suprised at how smoothly it went =D I've had a great deal of trouble with pain medication, as I'm allergic/intolerant to all the decent ones, including opiates and opioids. But I've found the pain very manageable. Recovery is slow and I've lost so much muscle in my left leg, I actually can't find it unless I tense like all hell and poke around for a while. But with such a great, EDS-friendly physio working with me, I know I'll get there, even if it does take me twice as long as it does a normal person, lol. The scars are already widening, only 6 weeks after surgery, but Natalie recommended some silicon pads that I can get from a hospital pharmacy, which will help to prevent that (note to self: for goodness sake, remember to get these!) and I've read about other EDSers having success with them =] Surgeons and doctors use them for patients with "difficult skin", as she put it =D
Anyway, my hands ae starting to rebel, so I shall wrap this up. Thanks for reading =]
<33 Kitty
Welcome to my Ehlers-Danlos Syndrome blog ^_^
I have the Hypermobility type, with Classical features (skin and organ tissue problems). Thankfully, my heart is structurally okay, and I feel like I just missed the Titanic with that one, lol.
I live in Perth, Australia, which just happens to also be home to Dr. Kevin Murray, a fantastic rheumatologist who specialises in treating EDS. He diagnosed me when I was 17 and has been treating me ever since. I also see Natalie Bennett-Bremner, a physiotherapist who treats EDSers and REALLY knows her stuff. She held a seminar for medical professionals and sufferers in Sydney this month and the response so far has been awesome. Please look both of these people up if you're interested =]
At the moment, I'm recovering from knee surgery. Nearly 3 years ago, I fell while working at McDonald's and landed on my left knee, sending my kneecap half way up my thigh. I set it myself and my workplace handled it all really badly. It took them over 9 months to pay me my lost wages and their insurance company has been trying to get me to settle ever since. I'm absolutely not going to, since it took my (excellent) orthopedic surgeon, Anthony Geddes, all this time to decide on a lateral release with tibial tubercle transfer as the best option, after exhausting all other options, because of the risks involved -- along with the possibility that it may not even work.
So far, I'm healing well and the surgery was a complete success. He actually seemed suprised at how smoothly it went =D I've had a great deal of trouble with pain medication, as I'm allergic/intolerant to all the decent ones, including opiates and opioids. But I've found the pain very manageable. Recovery is slow and I've lost so much muscle in my left leg, I actually can't find it unless I tense like all hell and poke around for a while. But with such a great, EDS-friendly physio working with me, I know I'll get there, even if it does take me twice as long as it does a normal person, lol. The scars are already widening, only 6 weeks after surgery, but Natalie recommended some silicon pads that I can get from a hospital pharmacy, which will help to prevent that (note to self: for goodness sake, remember to get these!) and I've read about other EDSers having success with them =] Surgeons and doctors use them for patients with "difficult skin", as she put it =D
Anyway, my hands ae starting to rebel, so I shall wrap this up. Thanks for reading =]
<33 Kitty
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