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_octinoxate
Sorry jay, no experience with that. Good luck.

I just popped in here to say that I finally caved and bought one of those cane/chair things-- you know, it's a cane that folds out with a little seat on it. It'll kinda make me feel like an old person but it's worth it for the freedom it'll give me: I won't have to shy away from social events anymore for fear of getting stuck with no place to sit down and take the load off my knees. I just wish they made some that weren't so clunky and frumpy looking.
annelise
i used to carry a chair around...i got a lightweight camping chair that was easy to carry around. it didn't have a back to it, which was sometimes too bad, but for me it was ok because there's often a wall around or something. or i'd have my head between my legs anyway to try to help my low blood pressure.

ppl would look at me funny when i'd whip out my chair and sit down in the middle of a grocery checkout line or whatever--i came up with the oversimplistic explanation that i'm prone to passing out.

i always hated the design of canes and the like...so many of them do feel frumpy and awkward and embarrassing. sad.gif

once i admitted to needing certain aids, though, my life became much easier. the people who matter don't think anything of it.
_octinoxate
Annelise, thanks for the reply. I didn't even think of the camping chair idea! that's clever. if this cane thing sucks, I think i'll look into that. Regarding the idea that the important people won't mind such things: you know, I know that everyone important to me won't think twice about it-- except for one person: my boyfriend. He's got issues with my health/mobility stuff. I know that he will somehow see me as lesser when he sees me using aides. I guess we'll have to have a talk about that--? We've just talked about it several times already so I don't know what else to say or do about it. Maybe he just needs to get desensitized to it--? By spending time with me when I'm using my wheelchair or something--? Sheesh. I wish he'd just get over it. I know it's not a big deal, all my friends know it's not a big deal... but I'm afraid that if I'm with him long enough when he has this attitude/issue, it's going to become a source of insecurity/inferiority for me. And I would hate for that to happen. Anyone else had to deal with this stuff? (Self-image issues, or the way other people see you and value you?)
annelise
my parents really get to me--when i had knee problems i was an embarrassment and making a big deal out of myself, and with my current health probs they seem to think the same--they think i'm always overexaggerating it, when really it's the opposite and i'm much worse than i let on! there's this big feeling that my illness is an embarrassment to them.

it drives me nuts and bothers me a lot, but i try not to spend very much time with them. i know it's because (at least partially) they love me and don't want me to be sick, young as i am...but arrrgh. sometimes i wonder if they'd be more understanding if i had a disorder that was better understood, but i'll never know (hopefully--i don't need any more health probs!).

i've been in lots of therapy. i'm massively insecure about it, and always half-expect others to react to me judgementally. i hate it. i feel like i'm the great shame of the family.

the first time i had my bf push me in a wheelchair, i was terrified that he'd see more clearly how sick i was and be repulsed, but he was really sweet, and leaned over to kiss me on the forehead periodically.

and, yeah, i have massive self-image issues about all of it. so it took me a long time to accept that i needed aides. it's mostly been with the help/insistance of friends!
_octinoxate
Annelise, your bf sounds like a real keeper! That's great. Mine tries hard to be understanding and accepting, but it's like there's this underlying idea that I'm some sort of invalid who can never be a true equal in his activity-filled life, but rather someone he'd have to care for. It drives me mad! It's like, I don't need someone to take care of me-- just do a few simple tasks now and then (eg, change a lightbulb if I can't climb up on a chair/ladder, stuff like that). I sometimes feel like I'm "worse than I seem" (like you said) just because I cope well and don't complain. But he takes that as almost a form of deception sometimes--! blink.gif

Do you use a wheelchair all the time? I scrolled back a bit in the thread and saw you have MVP--? What is that, if I may ask?

For me, I only have to use a wheelchair (or cane chair, or whatever) in more exceptional circumstances, so it's interesting for me to be someone who is probably technically "disabled" (at least now) but who can "pass" as totally fine-- if I just put up with physical pain. Kinda like I don't feel totally at home in either group, disabled or not. (Or like I feel at home in both groups, to put a positive spin on it!)

Thanks for sharing, annelise!
annelise
yeah, my bf has been a sweetheart. he certainly has trouble with my illness sometimes, though luckily he likes staying in--but much as he hates to see how sick i get, he believes in me and wants to help. i've come around to the idea of him taking care of me at times (i do need it, sometimes), though i was really resistant for a long time. i take care of him too, in different ways. it's what couples do. sometimes it's just more obvious is all.

it turns out that i don't have Mitral Valve Prolapse after all, or not severely enough to treat it--my doc had hoped to find an additional diagnosis that was treatable, since my primary isn't so treatable by traditional medicine. i have severe chronic fatigue syndrome, and i have to have someone push me in a wheelchair if i want to get out of the apartment. since i've had this, i've gradually gotten worse and had to limit my activity more and more. blah. but now i'm working with a naturopath who's helping me--the first medical practitioner to help me in YEARS.

oh, there was something else you said, octi...
Kinda like I don't feel totally at home in either group, disabled or not.

i know what you mean! i'm very much disabled, but my disability is invisible (as long as i don't wipe myself out, which i have to be careful about). i look like i'm perfectly healthy. and i'm not much interested in being defined by my illness, and i've never felt comfortable with online support groups and the like, though occasionally they have some valuable info. i don't feel disabled, psychologically, and all my friends are healthy, and sometimes their lives seem so dramatically different sad.gif . i've met a few disabled people online that i have more in common with than simply being disabled, and that really helps, to have that support and understanding from people who would be my friends anyway.

it's weird, about "passing"--i used to. and sometimes i'd be walking somewhere, and see a cute guy checking me out, and i'd smile at him and get a nice ego boost. but then over time i'd get tired out and end up with a slowed, awkward walk, and look over at the same guy, who would suddenly be looking at me like i was a freak rather than a cute girl. that happened many times, and it always felt horrible. i don't tend to talk about my illness very readily, and i'm really shy about people seeing how i move when i'm tired out, because i'm afraid of reactions like that.
annelise
also, i wanted to post to anyone who might be sensitive to sunlight because of illness or meds, or who might not get outside enough--VITAMIN D. i had an endocrinologist test my vit d levels years ago, and she put me on a prescription dose of it to keep my levels up--it didn't make any discrernable difference at all. but my naturopath was suggesting i try OTC vitamin D3, which seems to work better in the body than D2, which is the stuff that the prescription stuff supplements. i've done a bunch of reading on the science and it seems ridiculous that the rx stuff is the lesser form of the vitamin! i've had a bit more energy (very noticeably) since i've been taking the D3 instead of D2, so i'm sold on it, and delighted, since i haven't found many things to help with my health. if you're interested in D3, look for a supplement that says cholecalciferol in the ingredients (that's what D3 is). since it's a fat soluable vitamin, it's best to have a doctor take your serum levels and talk about supplementation.
_octinoxate
Annelise, it's awesome that you found a naturopath and some vitamin treatment to help with your condition! I'd give you a couple more suggestions of things to try, but I'm sure you've already heard/thought of/tried it all.

Regarding passing/feeling bad about not passing/stigma/etc: I've been fortunate in that before I started having any health problems, I became friends with a dude who's quadruplegic (sp??). After hanging out with him and meeting more disabled people through him, my ideas about disability (if I even had any!) became really quite positive, as I realized that it doesn't have to define you or keep you from having a normal, full life-- and these people are quads, which is way more limiting than what I deal with now. So that was a neat thing that made it easier to deal with this mobility shit when it hit. But you know what? Even before getting to know this pal of mine, I think I had a certain positive (if "othering") perspective on disabled people, because the fact that this friend is a quad was one of the reasons that I initially wanted to get to know him. It's something different and interesting. And you know, the first time I went out in my wheelchair (to the mall), I kinda felt cool and special about it! But yeah, that wears off a bit, doesn't it...

BTW- I thought your take on couples taking care of each other was really right-on, and really well stated!
jayboogie
QUOTE(juls @ Apr 15 2007, 08:48 PM) *
My little sister had a kidney transplant a few years ago; she was about 17 years old. Fanconi Syndrome. It's now been 7 years and she's never had any rejection problems!



that's awesome! i am just wondering what other's experiences are with transplants. i will need one in a few years, hopefully before i have to go on dialisis. i defenately don't see being on dialisis as any way to live.
it surprises me just how many people have never even heard of polycystic kidney disease.
oceangirl
Annelise,

How long have you had chronic fatigue for? I've had it since the winter of 2004. Took me 3 years to get a proper diagnosis - I have Lyme disease, bartonella and babesia. Fatigue and sleep dysfunction are huge problems for me.

-oceangirl
_octinoxate
Hi annelise, oceangirl, jay, jkat, and lurkers- I have a new development of sorts with my chronic knee issues and I'm hoping to write about it here to try to figure it out and get some feedback. Getting frustrated about my really slow progress in recovery, and fearful that I'm not ever going to get significantly better than i am now (which is about 50% of normal function), I went back to the doctor again. Two doctors, actually: the sports medicine guy I started seeing about 10 months ago, and also an orthopedic surgeon I had seen once before. Long story short, they see nothing really structurally wrong with my knees that would explain why I'm still having so much trouble and pain with this. They're "stumped" as to why i haven't recovered yet from what's normally not a real serious condition (as it has been for me) and don't have many other suggestions for me. But one of them said this: he encourages me to really explore emotional and psychological issues, especially surrounding the tough as hell break up I had at the same time all this health stuff was starting. he suggested that maybe the persistence of this injury is a way of punishing myself for how things went with that relationship and breakup. i've been thinking about this and it seems i need to explore it more.

before, i thought that the breakup and other life stresses/troubles (my best friend moving to africa, my mom getting remarried and leaving town, and so on) were definitely related to the injury, but more in the sense that the stress negatively impacted my healing systems. i think that's still true. but now i'm wondering if its maybe a more complex relationship, like he said-- something about punishing myself. because yes, i do feel guilty in some ways for how things turned out and the immense hurt caused to my partner... even though i never did anything with bad intention-- and in fact, didn't really "do anything bad" at all to cause the breakup (eg, i didn't cheat, wrong him, etc... it's just that i was the one who got scared of commitment and dissatisfied with him/the relationship). i don't really know how to unravel all this. i don't know know if i maybe need to resolve those guilt issues one way or another-- and i don't know if my ex needs to play some role in that process of healing, or if it's on me to do it on my own. and i don't know if resolving that breakup and guilt is really the key thing- maybe it's just about finding a way to better separate the two issues (my health and my breakup) in my mind so that one doesn't impact the other.. and then both can be dealt with in their own ways in their own time. gah, i don't know what to do with this. but i think that doc may be right-- it's mostly not physical stuff that's holding me back anymore. and there's no exercises or pain killers or support braces for the emotional components.

ach. help.
annelise
i tend to be suspicious of docs who blame stuff they don't understand on presumptive psychological issues.

however, you know yourself best, and there is a strong mind-body connection. you should absolutely explore and try to resolve any psychological issues you have--whether or not they're related to your knees, mental health is an important part of overall health. we need all the health we can get!

i've been in therapy off and on for most of the duration of my illness--chronic illness is a lot to deal with, and hell if i want anything emotional to be contributing.

oceangirl, i've had chronic fatigue syndrome since (ugh) 1998. i've done lyme tests, but i might ask my doctor to do a western blot...someone just sent me an article about amy tan and lyme.

oceangirl
_octinoxate,

It sounds like you're going around in circles on this one. Sorry to hear it! I'd tend to agree with Annelise. I'd be wary of doctors who blame physical illness on psychological causes. I only say this because so many doctors suggested the same thing to me and they were just flat out wrong. They just didn't know what was wrong with me so they said it was psychological.

I do think stress can affect recovery from illness but don't think your knees are hurting as a way to punish yourself for a bad breakup. Sorry to hear things aren't well with you.

-oceangirl
lux
i'd like to how you others here, who have diabetes, have been able to balance thinking about your illness and "normal" life. it just seems to me that if i don't think about all that much, my sugar levels go up the roof. but then again, when i try to keep myself healthy, i have to think about it al the time, which then makes me hate the idea of eating. it took me kind of a long time just to tell people that i know that i have it and injecting in public was a big no for me foor a couple of years. now i'm just really frustrated with the fact that i have to think about having diabetes 20 times a day. and that it's going to be like this for rest of my life.
just hoping it gets easier after some time. i've had it for 7 years now but i'm still hoping that it would just disepear suddenly.
i keep getting these great ideas, that i should lover my doses so that i'd eat less and that way i'd have to think about it les. i don't do this, because it's not too healthy. i just feel sometimes that even though the treatments are supposed to be so flexible and all that, that the illness is controling my life too much.
needed to vent a bit here, since i don't really know who should i turn to. everyone around me just thinks it's so easy, because the treatment in this country i supposed to be so good, and it's so common and i'm otherwise healthy and blahblahblah. ok, i'll stop now:)
erinjane
Lux, when were you diagnosed? I was diagnosed just before I turned 11 and for a long time I had feelings like yours, but now I can't really remember life before diabetes. It's become so second nature I don't think about it too much. I notice that people diagnosed later tend to have the feelings you do. Where are you located? In Winnipeg there's a support group for young adults with diabetes that I go to and I find it really helps to have others to talk to. This is the website for it. http://www.maestroproject.com/

Is your control bad lately and could that be stressing you out a lot? If you're having a lot of trouble controlling maybe it would be worth while to look into an option like an insulin pump. I know they're expensive, but I think (not everyone does, though) that it was totally worth it. I've had mine for 7 years and would never go back to needles. My control is so much better now, and ironically, even though I'm attached to a little machine 24/7 I think about my diabetes less.

I'm involved with Advocacy with the Canadian Diabetes Association and it's been a good support network. I get involved with trying to make a difference for Canadians with type 1 and type 2 and I get to be in contact with other people with diabetes. I definatly agree with you that people don't know how hard it can be because it's not a very visual disease. One of the things were lobbying for is better public education. We'll see.

I know there's other support groups online, but I don't have any addresses in front of me. Have you tried googling? Some of them offer great advice or even just a sympathetic ear. *hugs*
lux
Thaks for the reply, Erinjane. It's good to hear that i'm not the only one feeling like this.
I was 18 when i got diagnosed, and had a almost two years "honeymoon"-period. At that time there wans't really any group activities for people my age, so i never tried that. I live in northern Europe, and where i'm now there's actually better offering of groups for young people. just haven't been able to find out what they actually do. i always have to know before hand, because i'm a bit shy in larger groups. i guess i should send them an e-mail.

Last summer and fall i was kind of out of control:) so i've been getting a lot of lectures from the nurse i see regularly. now that i've been more stable, i start getting lazy again. i should check out what the pumps look like in real life, because i've only seen the pictures. i should get over my fear of the pump. but i think i'll have to wait untill next winter, because next fall i'll be in Canada:) Have to ask my doctor about the pump before i go.

i'll try the googleng, now that i have a bit more time after exams

sassafrass
Does anyone know of some good memoirs by people who've suffered some form of CFS? I don't know if I have anything "wrong" with me exactly. In fact, I'm beginning to think that I just have the same constitution as my mom, which means I get easily fatigued (and sometimes go thru periods of all-out fatigue), need a lot of rest and sleep and am very prone to depression and anxiety (luckily, the anxiety has diminished greatly in recent years. Alas, the other symptoms have increased). My mom's been to a million doctors and they've all diagnosed everything under the sun (including, "It's all in your head"), but never anything definitive. I myself assumed she was a hypochondriac until I began experiencing the same symptoms as I got older (I'm 37 now). Now I'm wondering (with the lack of an actual diagnosis) if that's just the way we are. Like, that's our cross to bear, while others have to suffer from strong, multiple allergies, or psoriasis, y'know? B'cuz I do everything I'm s'posed to: don't drink, smoke, or do drugs (er, did those all to excess long ago and got my partying privilages revoked for life), am not overweight, exercise regularily, eat (fairly) well (uh, got a bit of a cheeto addiction, but that's for another forum), have a spiritual life, get sunshine, take a mutivitamin, blah, blah, blah.....Yet I am still tired, fatigued, etc, etc. So, I've decided I'm not going to apologize for my constitution (hear that, unsupportive husband?) b'cuz I CAN'T HELP IT. Just like I'll never be a morning person or a jock or a workaholic. Just ain't me, babe.
sassafrass
Except I must add that, despite the bravado in the previous post, I still haven't fully embraced this new philosophy and thus, am still prone to bouts of despair caused by my fatigue (it's hard not to feel guilty about being too tired to do anything when two tiny kids are home w/you all day, expecting attention and interaction----and yes, while my kids do add to my fatigue [LORD do they add to it!], I had this shit well before they arrived).
annelise
i've read lots and lots about CFS, but haven't seen any memoirs worth reading. there's a documentary called "i remember me" about CFS, and the article i always recommend to anyone and everyone about the subject is laura hillenbrand's personal-experience-article originally published in the new yorker, which is posted here: http://www.cfids-cab.org/MESA/Hillenbrand.html ...when i first read it, i cried with familiarity. she, obviously enough, has severe CFS, as i do. if you have it, it's to a different degree--lots of people live with this syndrome and work jobs and raise families and struggle through. the severe cases are not as typical.

have you seen doctors about your fatigue? have you seen an endocrinologist? it could well be something other than CFS that you have, and it could well be something treatable. specialists tend to have a lot more insight into things that regular docs might overlook--i have some skin discolorations that every doctor ever dismissed or didn't notice, and when i saw an endo she honed right in on them.

here is the canadian definition of CFS, which is considered to be the most thorough (scroll down for the synopsis, you don't have to dl anything): http://www.cfids-cab.org/MESA/ccpc.html

they have done some studies and found that there's different gene expression in CFS than in healthy individuals, so it does seem to be genetic. what are some of the diagnoses that your mother has gotten? my mom has endocrinological probs, and vasovagal syncope, so even though she doesn't have CFS, it seems like i inherited something from her that predisposed me.

and if you do have CFS, it's not just something to put up with. it's important to find ways to cope and pace yourself--life is much more difficult to live when you're low on energy, so if you learn to respect your body and budget your energy well, you'll be able to get by better. i haven't found much help from traditional docs, but there are some alternative things that i would recommend as well. feel free to pm me if you like.
erinjane
Bump
kiss_the_fiddler
Thanks. Dunno why I couldn't find it. Was it here? Hiding? Maybe I'm just too tired. That could be true. Anyway, thank you. I don't have much to say today - just wanted to know you're here. For me, there's comfort in knowing that I'm not the only one who's miserable and stubborn.
kiss_the_fiddler
Okay, so I have fibro. And I'm a firefighter. And we're in fire season here. Although I'm not on a crew that goes out for extended periods this summer, I am on the local department and we provide initial attack for any wildland fires adjacent to our district in addition to whatever happens inside or district. So, summer is slam busy. It's beginning to take a toll on my body. I've let myself get too over done and I have such a difficult time breaking the pain and exhaustion cycle. I get so frustrated and I don't want to stop and be still (lazy) for a week or longer so my body can recuperate. I get mad and keep pushing on and, yup, what do you know, it gets worse. This is a vicious cycle. I hate it. I'm having a hard time accepting that i can't always just keep doing what the guys do. I try so hard to live up to them. It's not because I'm a woman that I can't keep up. It's because of the fibro. When I'm not having a flare up, I can keep up. I get so mad . . .
annelise
i can't imagine how hard it must be psychologically to be in such a physically challenging profession while dealing with this stuff.

it's SO DAMN FRUSTRATING...when you seem like you're just fine and you can fool yourself into thinking you're healthy, or healthy enough, for a period of time--and then you pay for it dearly. because of course you don't want to think of yourself as a sick person. but then it's harder to take care of yourself properly when you ignore your health condition.

sometimes i can be all well-adjusted and pace myself and ration my energy so i don't get worn out (and not be so damn hard on myself), but it's so so difficult.

i'm moving to a different apartment at the end of the month and i just keep making lists on paper and in my head--lots of it is stuff i can't do myself so i just think about it endlessly instead. i never quite get used to doing less/leaning on others so much. it SUCKS.

my latest drama (other than moving) has been emails from my sister--i emailed her because it makes me sad that we're not close like we used to be. she responded about how she's disappointed in me, because i used to be so motivated. another family member who's decided that i'm lazy rather than physcially sick. over time, she's somehow converted over to my parents' view that my illness is a motivation problem. if my own sister, who used to be my best friend, can be worn down after years of this illness, i wonder how long any of my few friends might really be able to deal with it.

the good friends that i do have are awesome though. i know moving will go fine with their help.
kiss_the_fiddler
annalise, gosh, how hard it must be not to have the support of your family. my sister is mostly supportive but i think she rolls her eyes sometimes. she's really understanding though for the most part. she's lived with me so she knows. my dad, on the other hand, thinks i should be working a 40/hr a week job. thinks that my work on the fire department isn't a job (it's volunteer) even though i'm there pretty much 7 days a week anywhere from 1 hr to 12 a day. it is frustrating. yes. thank you for your response. i want to write more but am running off now to help my sis in her house before it gets hot and the fire district gets busy.
ketto
Bumped for Xena!
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