Sharm
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Posted: Mon Jun 10, 2013 5:03 pm
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| I just needed to vent about this somewhere, I hope here is alright.
I'm disabled. I have a severe case of CFS. That basically means I'm exhausted all the time, wear out completely very easily, recover slowly, and I'm often in a lot of pain. However, I look normal, in fact, because of my positive attitude I look younger and healthier than is normal for my age. Most people don't believe me when I tell them how I spend the majority of my day in bed.
Today I went to the store to get something the doctor recommended. I was pretty tired after the appointment so I used the handicap parking. Most of the time I can walk just fine, I just can't walk far. As I'm getting into my car, a older lady does a double take looking at me and then gives me a dirty look, watches me pull out, peers into my window again to make sure she's seeing what she thinks she saw and glares at me again.
This sort of thing happens all the time. I'm just so very sick of it. I actually get less attitude when I need to use my cane or wheelchair, I just get the awkward stares and people ignoring me. It's better than it used to be, my grandmother had polio as a child and she was treated like a non-person by many people. Maybe that's why I get more attitude from the older generations.
Anyway, just so you guys all know, I don't mind talking about my disability. It's much better than people staring as they try to figure it out, glaring at me like they think they have, or purposefully avoiding me like I have a plague. I just wish people would think the best of me instead of assuming the worst.
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Juneberry
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Posted: Mon Jun 10, 2013 10:04 pm
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| I hope you don't mind me responding to relate, but I really can relate to how you feel. I have a mixture of severe migraines, fibromyalgia and mental health issues. I'm constantly tired because I can't function without at least 10-12 hours of sleep a day, my sleep cycle constantly wants to be longer than a 24-hour day cycle, and pain is basically life. I don't use a wheelchair, but I tend to use a cane a lot because I get dizzy quite regularly due to my blood pressure getting low easily. So, luckily for me (who is waiting for the judge to accept my disability), my father has disability.
But we're both fairly young compared to some other disabled people. We often get weird looks when we get out of the car when we use it, especially when my dad gets out without his cane. His issues are more notable, because you can see them on his skin. Mine aren't, so unless it's a day I'm using my cane for balance, you wouldn't know that I can't handle walking all the way across the parking lot most days from the pain. So, like you, I've gotten used to the awkward stares and such. It's unfair the way people stereotype what a disabled person looks like. Most people with mental health disorders that disable them don't need wheelchairs, and they tend to look fairly healthy besides their emotional state (unless it triggers eating disorders, etc)...But they still get their disability and still have their issues. Not all physical disabilities, similarly, will make us look it. Disability isn't skin deep. It's much deeper, sometimes.
So anyway, instead of continuing my blabber, my attempt was to say that I can relate, and you're definitely not alone. Hopefully, over time, we can at least get some recognition that is positive and not negative weird looks that make us feel like we don't belong as much as anyone else.
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Sharm
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Posted: Tue Jun 11, 2013 12:41 am
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| I don't mind at all, I was curious about what kind of discussion my rant would spawn. I think I scare people away when I start talking about this stuff.
My hats off to you for dealing with fibro, I think constant pain would be much worse than constant exhaustion. Something that helps me a lot with low blood pressure is to drink more than the usual amount of water especially right before you want to do something. You have to make sure you're eating enough salt too when you do that, but it really helps, especially in random things like dealing with fast temperature changes (like in a shower). There's also a medication that can increase blood pressure, but your body gets used to it pretty fast and then it stops working. Honestly though, you sound anemic to me.
It's great that you've got some support from your dad. My disabled grandmother was on my mom's side, so my mom is really good at understanding what I'm going through and listening to me when I tell her what I can and can't do. My dad tries, but he doesn't really ever get sick and when he does he does crazy things like doing a stage performance only a few days after his appendix burst. Thankfully his questions about "Can't you do this anyway?" come off as more endearing than annoying probably because he trust me when I say "No, Dad."
Oh, getting disability. I could not have done it without legal help, I do not envy you for what you've got ahead. Good luck!
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Juneberry
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Posted: Tue Jun 11, 2013 8:53 am
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| Well, I tend to be sleepy a lot from the fibro too, but I can't imagine just how bad that exhaustion is with CFS. In my case, I have had a tendency towards anemia since I was small- it's a family trait. But my father, who is anemic even more often than I am, doesn't get the dizziness I do because he has high blood pressure that actually can't be controlled without medication. My doctor, in my case, has made sure I start eating more salt...But that water idea i'll have to try, too! If I can drink enough water before my shower (enough so that it doesn't go all to my bladder before I get in), that might be a good idea. Because showers (and even worse, baths) make it so hard to stay balanced afterwards. And I don't make them too hot at all!
I'm glad your mother and father are supportive of you- a support network is always vital, no matter what the situation. I'm sure your father means well by asking. He's probably just worried, no? In my case, I only live with my father, so we're sort of used to each others issues. Most of our extended family knows our disabilities, but even some relatives don't understand or accept them anyway. It took a long time for my grandmother to accept the fact that we can't always keep plans because my dad can't drive from the pain or sleep issues, and I just don't have a driver's license. I think it's mostly because she's lonely that she pushes so much about it, but in general, she also is just quite forgetful. Other relatives have disability in our family too, but...Well, we're not close with most of our family. Either way, auto-immune disease, mental health issues and other problems that can cause disability seem to run rampant in our genes.
Trust me, I don't envy myself either. I've had legal help through the whole thing, but both my initial paperwork and my appeal didn't get accepted, so we went to the judge last month. I should call my lawyer to see if he's gotten any info yet, actually. The judge is new and apparently a rare case, who wants all records humanly possible.
Though the weird thing is I should have been able to get my disability really easily. I was on it before I turned 18, so I have to get a special kind of disability that jumps off that called 'adult child'. I guess they assumed in a year or so I'd be fine?
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Chu
Assistant Admin
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Posted: Tue Jun 11, 2013 12:19 pm
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| I want to apologize in advance if I'm being too intrusive since I don't personally have a disability. My depression does prevent me from doing a lot of things, but I think I'm pretty lucky with how much I can still do.
My mom has fibro, and it's hard to tell how much it affects her. She's the type of person who doesn't like to show others her pain, so the only hint of it that we even see is anger and irritability. It's only when the pain gets really bad that she says something. Most of the time though, she just lays on the heating pad all day. I feel so awful for her, and I don't know how to give her the support she needs - especially since she's unwilling to accept help or comfort from others.
I don't know anything about how people can claim disability. My grandma does because of various issues. Mom, however, doesn't seem to be that affected by fibro. I may be ignorant, but I never saw it as a very big deal? Maybe it's because she hides it so well, but I didn't know that it was as severe as it seems to be here. Could someone please explain their experiences for me, if you don't mind? Is it possible that my mom's condition isn't very bad - or does she just hide it from us?
Unfortunately, she also has depression, and she doesn't take medication or go to therapy for it. Again, doesn't let people in. She hasn't worked in a while. A few years ago, she got into a car accident that really beat her up. She refused to go to the hospital for it because she was afraid of what the bill would be, and we lost the car entirely. Despite the pain in her ribs and back (as well as the fibro) she continued walking to work until she just couldn't do it anymore.
I can only imagine the struggles that she has, trying to raise three kids with no income other than child support and whatever other aid we get. Well, I'm an adult now, but I only do work-study jobs. I get the feeling that I'll be supporting her in the future, and I don't mind. It will actually comfort me knowing that she'll at least have someone around, you know? And I feel like I owe her after how much she sacrificed for me. I'm just worried that I won't be able to do enough, or that I'll only make her depression worse by forcing her to depend on me.
Ugggh, this turned into a much more personal rant than I anticipated. >< I just have a lot of feelings about my mom, and I want to do the best that I can for her. How can I support her without insulting her? I don't know what to do now, and I don't know what I'll do in the future.
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| _________________ Add me on Skype! I'm ewitsChu. Even if we've never talked, just tell me your username in the friend request and I'll accept.
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Juneberry
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Posted: Tue Jun 11, 2013 12:41 pm
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| Fibromyalgia tends to affect everyone differently, and with your mother's personality of not telling people her issues, I can understand your reasoning well. Fibromyalgia is an issue that is said to affect the nerves. Your nerves fire when they shouldn't, so you feel pain that has no logic. In my case, I'm also hyper-flexible (double jointed is the layman's term), to the degree that my joints are actually super weak from not liking to bend normally. So, for both the pain and my weakness, I'm in physical therapy. I also take pain meds constantly, because of the way the fibromyalgia pain affects me and then topping it off with the migraines I get.
I think your mindset is very good, though. It's natural to want to help the ones you care about- so it's a good thing you feel so strongly. But remember, your mother is herself. If she isn't telling you what's wrong, there are reasons. It could be she doesn't want to admit she's struggling to herself, or that she doesn't want you to worry. One of the best things you can do is talk to her about it, I think. Tell her how it makes you more worried that she doesn't tell you, because you don't know how to help her like she's helped you. Honesty is the best policy, right? If you don't tell her your concerns, she won't know. Though, even then, she'll have to want to ask for help before she will ask...Sadly, the ego can be quite troublesome. While I know you're worried she'll become more depressed, you're already worried that her pushing herself as it is could be more trouble than she's letting on...So either way you're worried. Isn't it better to try?
Well, either way, that's just my thoughts. Unlike your mom, I tend towards whining about my pain, unless it's a day my dad's sick. I try to hide to myself those days. Just know that your mom definitely will have difficulties at times, but I can't say for sure what they are. Fibromyalgia is something that varies greatly for each person, my doctor says. However, from personal experience...Be VERY careful if you ever give her a shoulder rub. People with fibromyalgia are diagnosed often using a test involving certain pressure points, and when it hurts to be touched there, it hurts bad. One of them is around the shoulder blade, so it can hurt quite a bit if it's pressed the wrong way.
Also, side note...Certain mental health issues, including depression, can sometimes be related to fibromyalgia. Or at least it is often concurrent. So I'm not surprised she has it.
It's at least good you know what her issues are at all. I'd say, for your personal benefit, you might find it helpful to look into either support groups for people with these issues to talk about these feelings that it causes you, or just general resources online. You can find quite a good number of things about this stuff nowadays- though sometimes fibro is tough to figure out, because it's still a diagnosis that is questioned by many doctors and such.
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Chu
Assistant Admin
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Posted: Tue Jun 11, 2013 12:57 pm
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| Thank you for the detailed response, June!
I agree, I do need to let her know about these things. I just figure that right now, it's not the most important thing to address. It doesn't seem like she has much "reason" to open up, I guess. I'm still her kid, relying on her, so she feels to a certain extent that she shouldn't let me in about things that are bothering her. I'm hoping that as I get older and she sees me as more and more of an adult, we'll naturally get closer. Our relationship and communication has already improved a lot in the past few years, so there's no reason for it to stop.
ANYWAY, I didn't even think about support groups. I'll look into that a bit and see what I can learn. Thanks again. I'll stop derailing the thread now.
Both of you are very strong for dealing with prejudice on top of your disabilities. I hate how people are so quick to judge others, especially when it comes to physical or mental issues... It's awful how you're essentially made to feel worse about your disability because you look healthier than people would expect. I can't imagine how much that would hurt.
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| _________________ Add me on Skype! I'm ewitsChu. Even if we've never talked, just tell me your username in the friend request and I'll accept.
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Sharm
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Posted: Tue Jun 11, 2013 3:39 pm
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| I think it's less that I'm strong and more that I have no other choice than to deal with it. I suppose it'd be easy to become bitter, but that just causes the attitudes that I hate so it's not really an option.
I'm curious, who does your mom have to rely on? If she doesn't have anyone, I'd say that was a good reason to poke her about it and let her know that you'd like to try for the job.
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Chu
Assistant Admin
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Posted: Sun Jun 16, 2013 3:39 pm
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| Gah, I'm having so much trouble keeping up with threads lately... sorry.
I think she relies on her sister the most. Friends and boyfriends have all shown that they can't be trusted for one reason or another, and she told me herself that she doesn't want to go to me because of my depression. Her other siblings are kind of flaky, except for one of her brothers. She can rely on him for material or financial things, whereas she can rely on her sister for personal things. I have no clue how that dynamic works, though, because both individuals deal with their emotions by resorting to anger.
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| _________________ Add me on Skype! I'm ewitsChu. Even if we've never talked, just tell me your username in the friend request and I'll accept.
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KathiraNarae
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Posted: Sun Sep 22, 2013 3:25 pm
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| I have to say, I'm very happy that I'm lucky enough to not have a disability, or anything like that. I've only ever had to deal with nasty kids at school when I was a kid, but otherwise life has been fine for me. Even so, it still angers me when judgemental little shits (sorry) decide (hey, that person doesn't look like they need this special thing, they shouldn't have it, how dare they!' Except, well, as you guys prove, disability is not always visible. If only people would think, for gods sakes. There are less liars who are only after the benefits from being disabled than there are people genuinely disabled.
Stay strong, guys, you're part of the nicer side of humanity.
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