My little pity party rant...

[BettaDragon]

So I've been dealing with chronic joint pain all over my entire body for some time due a condition called Ehlers-Danlos Syndrome. Lately the pain's gotten much worse to the point where I can't get out of bed in the morning any more. I'm missing a ton of school. I've asked my mom to have me home schooled numerous times and she wouldn't let me as that was "giving up" in her book. So far I'm failing the only class that actually matters for me to graduate high school this year. The constant screaming to get up and the violent pounding on my door when I physically can't get up has really taken a toll on me. I've told my parents they are not helping me, they are only pushing me down when I'm having a hard time and they'll apologize and then do it again the next morning. The anxiety of having to deal with this every morning has made me not want to sleep and turned me into an insomniac which only made everything worse.

I absolutely refused to get up today as I was in too much pain and I didn't feel like putting up with the crap about how "selfish" I am when I walked out of my room. My mom then called my doctor because she thinks I'm depressed which I very well might be as it often goes hand and hand with chronic pain. The doctor has me seeing a ton of specialists now (more to my already very long list). The doctor also has now ordered that I be HOME SCHOOLED. I know it needs to be done as I've told my mom it needs to be many times but I can't help but feel sad as I won't see my friends anymore. The worse repercussion of this is my school system, being idiotic and not willing to bend to the individual, will most likely force me to quit my job even though this is only a morning problem and I work in the late afternoon. I'm going to get home schooled until all the problems are sorted out.

I tried explaining this all to my boyfriend tonight who then got very distant with me and acted surprised about all of this even though I've told him everything as it happened. He then went silent for a long time and suddenly had to go and hung up on me in mid "I love you".

All and all, everyone gets a pity party once and a while and I need one now. I need to vent and let it out. I feel like crying but I know if I start I won't stop until I've dehydrated myself. I know there's a lot of people here with chronic pain problems. Just wondering what you guys do to cope. Again excuse my pity party, I'm just really stressed.

 

[2bacop]

All you can really do is take a deep breath. I could tell you to try and expain things to your parents but in all reality it wouldn't help. I, although it wasnt chronic pain, had a condition call Gastroporisis which basically means that I have trouble digesting food. For the longest time I could not keep any food down and my parents could not understand why I was so weak. All I could do was take a deep breath and take it one day at a time. I too was in my senior year of high school and failing my classes. Just remember that a D is still passing and even if you mess up your GPA there is always some college, whether it be four or two year, that will accept you.

 

[Haligren]

I suffer from PTSD - Post Traumatic Stress Disorder, so it's been a trial treating the anxiety and severe depression that come with that. I've been fortunate that my mother has been very understanding, but I no longer live with my mother. I live with my husband's family now.

My husband and I both have problems with depression and anxiety and we both take similar meds that can make us very sick. Unfortunately his parents do not understand this and come down very hard on him when he misses a day of college - which is mother is paying for. They have also treated me in a similar fashion - without so many words of course, but they've made me feel alienated.

What I'm trying to say is, is that I can sympathize with you. I really hope that your parents will be more understanding now that they've got confirmation from a doctor. I wouldn't dwell on the fact that they had to hear it from someone else before they believed you, it's pointless. Just be glad that they do. Hopefully they'll start to support you more.

As for your boyfriend, sometimes crises can scare them. Boys are often raised to think that emotions are bad and sympathizing is weak. So when they have a friend who confronts them with these sort of things, they don't know what to do. That being said, he's in high school, you'd think he'd be old enough to think for himself but whatever. Boys mature much slower than girls. :\ I'm sorry he's being such a d**k, and I hope he'll come to his senses.

Best of luck. I hope you feel better soon.

 

[Golden Gate Geckos]

You are not alone living with chronic pain. Do you have the vascular type of EDS? I can imagin how hard it is for you... many with this disease cannot even go out in the sun, or have problems with their blood vessels rupturing on top of severe joint pain.

I suffer from severe FMS, which is a neuro-immune disease most likely caused by over-exposure to harmful chemicals from being a Chemical Engineer for over 25 years. I also have degenerative bone disease in my neck and spine. The stenosis is causing the canal where my spinal cord runs through to narrow, which impedes on the main nerves causing neuropathy in both arms and hands. They either feel totally numb, or like my hand is stuck in a light socket. You know, it's like when your arm falls asleep at night and when it comes back to life it feels like pins & needles... all prickly like electrical charges. It's like that almost all the time, day and night.

It is very difficult to describe to someone what it feels like when you are in pain 24/7. The only way I know to tell someone how bad it hurts, or how it never stops, would be to compare it with a bad toothache and being told there is nothing that can be done for it and it will never go away... you'll have to live with it for the rest of your life. I have been in such severe pain for so long that in the past I have actually considered that if this is the way I have to live, then being alive is not worth it. The only relief I get when it's that bad is Oxycontin and steriods, because even morphine does not help nerve pain. I take 1500 mg of Neurontin 2X a day, and that helps sometimes. I have gotten some relief with acupuncture.

When it's cold and damp, I feel it the most, and sometimes it takes me a half hour or more just to get out of bed in the morning. Many times I get an exacerbation from stress, too. It's hard to get motivated to get normal exercise when you hurt so bad! I have been through 3 levels of pain management classes, and diaphragmatic breathing and relaxation can help a lot, too.

For many people living with chronic pain, it's the depression that comes with it that makes us feel so discouraged, hopeless, and full of despair. I can honestly say that if it weren't for my Faith and having my geckos to care for, I would have checked out several years ago. I learned that there is a big difference between being in pain, and suffering from it. I rarely suffer anymore, because I know there is a reason I have these diseases. It is something that my pea-brain cannot comprehend, but I have very strong Faith that helps me negotiate life sometimes hour-by-hour... but I get through it!

It's OK to have a pity party sometimes, Liz. Maybe you can find a chronic pain support group, or a forum for those who live in pain? Is there anything that you can do for yourself to make you feel better right now? I'm glad you felt like you could vent here on GF...

 

[metaldad904]

I honestly didn't realize how many people on here dealt with chronic pain, maybe we should just make a "health problems" section? Just a suggestion.

You're definitely not alone hon, I for one have multiple sclerosis & can sympathize with pain that nobody around you seems to get just how bad it is at times. There are some days where one side of my body (typically the right side) feels like its sitting in boiling water, i'll get muscle tremors that will wake me up from a dead sleep, no fun at all. I admit, i don't cope very well with things...i'm actually good at dealing w/pain, but the depression it tends to put me in will typically urge me to do things i normally wouldn't do (ie drinking, but by no means am i suggesting that...it's no good at all). I honestly think parents unintentionally make the situation worse when it comes to theirs kids & an illness. They're so obsessed with protecting them & getting them through it that they think they can "will it away" as if they have some sort of power and by saying "Just try harder" or whever it may be it will all be better. Nobody knows your limits better than you do, so regardless of what someone else says you just need to stick to your guns & not push yourself too far.

As for your BF, to be quite honest if the guy is acting like that knowing your situation & is still being a creep then he's not worth dealing with at all imo. I know some people are uncomfortable with that type of stuff, especially guys but if you care about someone you gotta at least try to be there for them. I'm about the most immature guy when it comes to relationships these days & i even know that. Maybe some people are just more able to be empathetic or something, just seems crazy to me tho. You're also 17, and i'm assuming he's of similar age....a lot of boys at that age aren't equipped to handle anything serious...and i mean anything. Their "flight response" is at an all-time high during this point in their lives & if anything serious comes along they lose it. Some grow out of it while others never do. Maybe just give him a day to think, he might be that type that needs to evaluate his feelings before being expressive...it does happen.

Don't sweat the pity party, we all need one sometimes.....

 

[T&KBrouse]

Sounds like we're in the same boat, Jason. I've been dealing with MS for 10 years now. The pain can be unimaginable. I also have to deal with the memory loss and eyesight issue. My cognitive abilities are starting to slip (which is becoming apparent when I type).
And the best part is having the "down days" when I can't walk properly and my speech is affected. People that don't know me think I've been on a drinking binge. Consequently, it causes me to become isolated, which in turn, causes depression.
Vicious cycle, ain't it?

My youngest son made me a sign: "Pain is weakness leaving the body. Your the strongest woman in the world, Mom. I love you."

I understand where you're at, Liz. You're so young to have to go through this. I pray everything works out well for you and you find a way to be able to live a long, happy life, no matter what lies ahead.

 

[metaldad904]

Sounds like we're in the same boat, Jason. I've been dealing with MS for 10 years now. The pain can be unimaginable. I also have to deal with the memory loss and eyesight issue. My cognitive abilities are starting to slip (which is becoming apparent when I type).
And the best part is having the "down days" when I can't walk properly and my speech is affected. People that don't know me think I've been on a drinking binge. Consequently, it causes me to become isolated, which in turn, causes depression.
Vicious cycle, ain't it?

My youngest son made me a sign: "Pain is weakness leaving the body. Your the strongest woman in the world, Mom. I love you."

Sounds like it, nice to know someone else out there knows how it is. My Dad has it too (Not genetic my ass) so it's something i somewhat expected since i was a kid. I noticed it started rearing its ugly head a few years ago when i started getting weird pain that i couldn't explain. At time my eyesight will go blurry & at first i thought it was just b/c i'm already blind a bat but even when having contacts or glasses on it would do it, my doc had to inform that it could happen at times. What i fear the most is paralysis, at my age my Dad went through a 6 months period where half his body became partially paralyzed to the point where he couldn't walk...hopefully that won't happen to me but it's always in the back of my mind. I've noticed on my bad days i have a hard time walking normally, i limp pretty noticeably b/c it feels like i stepping on nails...hate that crap. It really does cause you to become isolated, you don't want to put it on anyone else and it makes you just want to close yourself off from everyone around you. I'm already antisocial as hell so this doesn't help things at all. It really is a viscious cycle.

Awww, that's really sweet....sounds like a good boy. My daughter isn't aware of mine yet. She's only 7 and is a really worrysome type so i don't want to stress her out anymore than needed. She's already just like me, looks like my clone & is emotional as hell. One of these days i'll tell her i'm sure.

 

[T&KBrouse]

I've noticed on my bad days i have a hard time walking normally, i limp pretty noticeably b/c it feels like i stepping on nails...hate that crap. It really does cause you to become isolated, you don't want to put it on anyone else and it makes you just want to close yourself off from everyone around you. I'm already antisocial as hell so this doesn't help things at all. It really is a viscious cycle.

Yup. As a Floridian, I relate it to stepping on sandspurs. Hurts like hell. And this is such an obscure disease that when I need help, my husband breathes this heavy sigh, like I'm a big inconvenience, which lends to the depression.:main_thumbsdown:

 

[lizardlove]

You know how I feel about him, so I don't need to go into it again.

Try and make everything as comfortable for you as possible. As long as you're trying to make life easier, you're fighting, and that's good. You're already being homeschooled which will help with the morning stuff. I remember missing a lot of school because of some weird digestive thing that only happened in the morning... Ate too much sand, I guess. But as long as you're trying then it's good. And obviously your friends will be there if you need anything, I'll always run over if I can if you need me, whether it's Rem's toes or anything else! But keep doing your best because there are people rooting for you, even people on these forums that have never even met you, and that's something special.

 

[metaldad904]

Yup. As a Floridian, I relate it to stepping on sandspurs. Hurts like hell. And this is such an obscure disease that when I need help, my husband breathes this heavy sigh, like I'm a big inconvenience, which lends to the depression.:main_thumbsdown:

Yeah, whenever i mention it to someone they seem to know "of" it but have no clue what it really is. I have to sit there & give them a biology lesson...and then it looks like their brain just short circuited. It seems like the disease is really downplayed in the media, especially since Parkinson's is rather similar to it & considered more serious, and that particular disease is always in the limelight b/c Michael J Fox has it. It gets pretty annoying when people kinda roll their eyes when you say don't feel good enough to do something, they don't realize how much it takes out of you & just how miserable you are and doing stuff just makes things worse. One time i was feeling fine all day & then i left work, stopped at Publix and in the middle of the store all of a sudden my right side started hurting really really bad to the point where i was having trouble getting out of there...it was as if someone was jabbing me with a cattle prod. People can be rly ignorant about stuff like that....to the point where its infuriating. And then they wonder why i hate most people....:main_angry:

 

[BettaDragon]

You are not alone living with chronic pain. Do you have the vascular type of EDS? I can imagin how hard it is for you... many with this disease cannot even go out in the sun, or have problems with their blood vessels rupturing on top of severe joint pain.

The geneticist is not certain what type I have as I have mixed symptoms of a lot of types. I don't have severe heart problems but I have a murmur and enlarged valves and my blood vessels break very easily and I get nasty bruising. I got a really bad looking bruise on my arm now from hitting it against a table that looks exactly like a skate egg case (the kinds you find dried up on the beach). It has highlights and shadows and all.

When it's cold and damp, I feel it the most, and sometimes it takes me a half hour or more just to get out of bed in the morning. Many times I get an exacerbation from stress, too. It's hard to get motivated to get normal exercise when you hurt so bad! I have been through 3 levels of pain management classes, and diaphragmatic breathing and relaxation can help a lot, too.

I hurt the most when it's raining or humid. That used to be the only time I hurt but that's not so true anymore.

It's OK to have a pity party sometimes, Liz. Maybe you can find a chronic pain support group, or a forum for those who live in pain? Is there anything that you can do for yourself to make you feel better right now? I'm glad you felt like you could vent here on GF...

The GF is really the only place I feel like I could vent to other than my friends. All my other forums I'd probably get flamed at for no reason. This is the only forum I got to that has mature people, lol. It's my little bit of sanity.

I honestly think parents unintentionally make the situation worse when it comes to theirs kids & an illness. They're so obsessed with protecting them & getting them through it that they think they can "will it away" as if they have some sort of power and by saying "Just try harder" or whever it may be it will all be better. Nobody knows your limits better than you do, so regardless of what someone else says you just need to stick to your guns & not push yourself too far.

My mother for one does sometimes believe if I try hard enough it will go away and that I'll grow out of it or something. I tell her I know my limits but she doesn't listen. Whenever my parents push me too much I just block them out and ignore them. I'm not going to hurt myself by pushing my limits just to make them happy.

As for your BF, to be quite honest if the guy is acting like that knowing your situation & is still being a creep then he's not worth dealing with at all imo. I know some people are uncomfortable with that type of stuff, especially guys but if you care about someone you gotta at least try to be there for them. I'm about the most immature guy when it comes to relationships these days & i even know that. Maybe some people are just more able to be empathetic or something, just seems crazy to me tho. You're also 17, and i'm assuming he's of similar age....a lot of boys at that age aren't equipped to handle anything serious...and i mean anything. Their "flight response" is at an all-time high during this point in their lives & if anything serious comes along they lose it. Some grow out of it while others never do. Maybe just give him a day to think, he might be that type that needs to evaluate his feelings before being expressive...it does happen.

I've been with my boyfriend for going on four years. We known each other and were good friends for much longer so he knows the entire process of what's happened ever since I was diagnosed. He's normally a very empathetic person so I have no idea what's going on with him now. He's 18 but he's really mature for his age. He doesn't do a lot of the stupid stuff my guy friends do out of immaturity. He's more of the "sit down and debate about the questions of the universe" type. He's just acting like everything I've told him that's going on hasn't been happening. I dunno, maybe he just didn't put the pieces together. Gonna give him a couple days though.

I understand where you're at, Liz. You're so young to have to go through this. I pray everything works out well for you and you find a way to be able to live a long, happy life, no matter what lies ahead.

I intend to be on this rock (or another if Mars colonization is available) for another 100 or so years...

Thanks for all the support guys. It really does help and it makes me smile that other people understand what I'm going through and that I'm not alone.

 

[metaldad904]

My mother for one does sometimes believe if I try hard enough it will go away and that I'll grow out of it or something. I tell her I know my limits but she doesn't listen. Whenever my parents push me too much I just block them out and ignore them. I'm not going to hurt myself by pushing my limits just to make them happy.

I've been with my boyfriend for going on four years. We known each other and were good friends for much longer so he knows the entire process of what's happened ever since I was diagnosed. He's normally a very empathetic person so I have no idea what's going on with him now. He's 18 but he's really mature for his age. He doesn't do a lot of the stupid stuff my guy friends do out of immaturity. He's more of the "sit down and debate about the questions of the universe" type. He's just acting like everything I've told him that's going on hasn't been happening. I dunno, maybe he just didn't put the pieces together. Gonna give him a couple days though.

Thanks for all the support guys. It really does help and it makes me smile that other people understand what I'm going through and that I'm not alone.

I hate that, i could try all day long for years on end and i'll never be able to fly or have telekenesis....no matter how bad i would want to. That's like someone saying "just walk it off".....you can't walk this type of stuff off, in fact, if you try to you could make things a lot worse. My mom is like that, and was like that to my Dad, mystery why they got divorced lol.

Don't take this the wrong way please cause i'm not trying to act like i know everything or something but i hear the whole "he's really mature for his age" thing all the time i swear. Apparently there are a lot of mature 18 yr old boys out there lol. Maybe he's different, i don't know him & i'm not about to claim i do....i just have noticed that a lot lately from different people. I know when i was 18 I had a daughter & was married & still wouldn't say i was very mature, but that's me. Maybe he's just going through something & isn't intentionally meaning to be like that towards you. Just give him his space, maybe he'll come around. He could just be dense too like you said and didn't put the pieces together. Guys are rather stupid at times....or all the time.

You're defininitely not alone, there are plenty of us out there that know what you're going through & always around to lend an ear. Hope things get better for you soon, try to stay positive

 

[BettaDragon]

My mom didn't try to wake me up today which was good. No morning stress and I caught up on a lot of sleep I was missing from being an insomniac. I slept for well over 12 hours. I dunno, maybe it just took a professional to really get it to sink in for them.