Chronic Illnesses and Life

[MrShowerHead]

Oh, how I wish I could exercise like regular human beings...

A side effect of my specific body is that I, well, I break. I break from exercising. I did go swimming, twice a week for two months, and then I managed to inflame. My. Achilles. Heel. It broke - I couldn't walk on it for two weeks.

My body has a tendency of doing things that way. I also have a tendency to over-work myself, but right now for example I'm restricted to lying on the couch because I can't support myself on my left leg because - wait for it - I went on a walk yesterday. I walked for maybe ~an hour and a half and now I can't use that leg. Because of knee issues (dislocation for no reason whatsoever twice in the past) I don't dare run or anything like that, and also it causes me a lot of pain.

I'm on medication for the pain and in physical therapy to learn how I can exercise and to strengthen my muscles a bit. Hopefully I'll learn enough to be able to go to a gym on my own come summer time.

Blargh.

Wait, do you have luxating patella too? That dislocating knee thing?

Ugh, yeah, it hurts. I actually dislocated it just an hour ago, while on my usual walks outside. I go to physiotherapy because of that, like I said earlier. And those 3 surgerys, that didn't work. At the moment I can't jump or run and downhills are hard for me to walk.

So, just out of nowere? Man, sometimes my knees dislocate when I'm in bed. I got into this thing because of a blunt trauma that happened when I was a child. Did you have anything like that?

 

[benjai]

I dunno, really, it's only happened twice. When I was fifteen a doctor said that something in my knee is too short and hadn't grown in the same pace as the rest, and I've just always assumed that tension is what caused it to pop those two times. The second time I actually went to the ER (...a month later....) and they said they don't do anything until it happens a third time. It didn't heal properly until like the past fall, and now it's back to the "normal" amount of pain I suppose so I just ignore it.

The thing about being diagnosed with fibro is that the doctor's will most likely apply all pain I feel to that. Never been in any accidents or anything, I just worked to hard and put to much stress to my body and thus caused myself chronic pain. At least my meds help, although I don't react to pain killers in the normal way either. My body kind of only wants to respond occasionally to pain killers. My pain receptors are all kinds of fucked up apparently.

That's just the way life is though.

 

[MrShowerHead]

Awww... You guys reminded me of this:
http://www.makeuseof.com/tech-fun/internet-hug/


Anyway, I'll be back tomorrow at home (I'm a civil engineer working out of town), so I'll ask my girlfriend to write me her side of the story, but she'll be speaking through me since she's not fluent in english.

She mostly went trough pills and injections and she is still taking an every day medication, but I'd ratter let her tell you the whole story; I may have lived this experience beside her, but her firsthand version should be way more accurate.

Her rheumatologyst also suggested her that she should do more excercise, and since these days she has a very active life at work she may have that covered up until the weather heats up again and she gets back to swimming... Excersice I recommend to you guys, since it doesn't have an impact on your joints, muscles and body in general.

Anyway, see you guys later, but before that:

To Koski: How about showing us your artwork? I'd love to see your music-inspired drawings.

To MrShowerhead: Pat Pat*...
*That's an Internet pat on the shoulder, get it?
I guess even an Internet hug from a "almost twice your age"-old guy would be weird, uh?

Yeah, swimming can be a great way to exercise. I did it for sometime, but I don't enjoy swimming that much, so I returned to normal gym exercise.Not my thing, I guess. Aquajogging(I think that's the name) can be a good way too, since it avoids aching joints and muscles.

And I would like to see what your girlfriend has to say. It will most likely be more helpful than what I've done here

Internet hugs aren't wierd at anytime. At least for me

 

[MrShowerHead]

I dunno, really, it's only happened twice. When I was fifteen a doctor said that something in my knee is too short and hadn't grown in the same pace as the rest, and I've just always assumed that tension is what caused it to pop those two times. The second time I actually went to the ER (...a month later....) and they said they don't do anything until it happens a third time. It didn't heal properly until like the past fall, and now it's back to the "normal" amount of pain I suppose so I just ignore it.

The thing about being diagnosed with fibro is that the doctor's will most likely apply all pain I feel to that. Never been in any accidents or anything, I just worked to hard and put to much stress to my body and thus caused myself chronic pain. At least my meds help, although I don't react to pain killers in the normal way either. My body kind of only wants to respond occasionally to pain killers. My pain receptors are all kinds of fucked up apparently.

That's just the way life is though.

Maybe something's wrong with the ligament. I'm no doctor, so I wont be going into that...

Sorry, got to ask, what exactly is this fibro? Does it have any other symptoms? Or is it only joint/muscle pain?

 

[benjai]

Fibromyalgia is more or less just generalized pain. Mine comes with RA-like symptoms (stiffness in hands and other joints) but also, when I was unmedicated, on a scale of one to ten I was in a near 7-8 of constant pain of very many different kinds. I slept a lot, I was tired all the time, I get random and seemingly spontaneous pain. There is a test, where there are like sixteen different pressure points, and if you have pain in at least 11 of them and there's nothing else wrong it's most likely fibro. So my doc did the pressure test and I fell down to the floor because my knees gave out from the pain. So, yeah, fibro.

It's theorized that it's a problem with how the pain receptors work and how the brain receives pain signals. But no one really knows why.

 

[MrShowerHead]

Fibromyalgia is more or less just generalized pain. Mine comes with RA-like symptoms (stiffness in hands and other joints) but also, when I was unmedicated, on a scale of one to ten I was in a near 7-8 of constant pain of very many different kinds. I slept a lot, I was tired all the time, I get random and seemingly spontaneous pain. There is a test, where there are like sixteen different pressure points, and if you have pain in at least 11 of them and there's nothing else wrong it's most likely fibro. So my doc did the pressure test and I fell down to the floor because my knees gave out from the pain. So, yeah, fibro.

It's theorized that it's a problem with how the pain receptors work and how the brain receives pain signals. But no one really knows why.

During my knee surgeries I was somewhere around 8-9 of pain. That was the only time I had to use painkillers. I didn't get much sleep during that period, I remember staying awake for 30 hours and having 3-4 hours of sleep.

Now doctors are thinking I might have Marfan syndrome. Lets see, so far I have:

RA
Asthma
Luxatio Patella
Rhotacism (Doesn't really count, but...)
Possible SAD (Hasn't been diagnosed, but I have almost every symptom)

Gotta catch 'em all!

I wish I could do more about that...Sorry

Hugs

 

[benjai]

I still don't understand how I went around in an 7-8 in pain constantly without painkillers at all. I took some paracetamol occasionally but beyond the two times I was at the ER and got codeine I never got any heavier painkillers.

Me, I got fibromyalgia, potential IBS making me nauseous when I eat, lactose intolerance, bad knees, depression, GAD and possibly PTSD. The only thing I'm diagnosed with is fibro, but I'm working on a diagnose for my nausea and sickness and I'm seeing a shrink on Friday to get help with all the mental stuff. These things seem to come in pairs, so to speak.

 

[HellspawnCandy]

I have Crohn's disease, not exactly RA but same immune system attacking. First off it doesn't run your life, it just grabs your attention. This may sound super weird but inflammations can be helped pretty well. Since I have intense inflammations in my esophagus and intestines I've changed my diet a lot to involve none other than red onions. Red onions eaten raw can help with inflammation a ton.(of course this cannot replace your medication) Weird advice but hey, it may work.

 

[Koski]

Okay, jumping back in to this thread now. Sorry I've been gone from this for so long, I've had a lot to think about the past weeks.

I'm really not doing okay. Since this tuesday, one of my toes has gone numb and my sense of touch in that toe is greatly impaired. I'm weak in my arms and legs, so much that it's becoming a task to stand up from a sitting position. This could apparently be a very serious side-effect of the medication Remicade that I take. I've called my rheumatologist, or tried, as I've tried doing since the beginning of January, but I have to go through the nurses' office of the rheumatology department at the hospital. I've called at least two times a week for since I got back home after christmas, and all I ever get is a nurse telling me that they'll leave a note to my doctor and that my doctor will call me back. Except that she never does. Not even when I call them up, choking on tears because I'm so scared that I'm shaking telling them that I've lost feeling in my toe and that I want to talk to my doctor. No one even offers me an explanation and recommend that I go to the regular clinic and talk to a doctor there for my rheumatic problems. Wat.

I got a tip from benjai's shrink to call the boss of the rheumatology department and file a complaint on how badly I feel I've been treated. They're supposed to call me back this week and talk to me about what I can do to get help.

This is apparently a common problem with the care in Sweden; it never listens to people who are young adults (age 18-25) and most of us get dismissed as not having serious enough problems to get attention from a doctor. It's a russian roulette if you'll get a good doctor or not.

I'm tired most of the time, extremely unmotivated to do anything, even though I desperately need to work on portfolios for the schools I'm applying to. I'm getting increasingly worried about how I'm going to manage life with all this crap getting in the way all the time. How the hell am I supposed to hold a job when I can't get up in the mornings half the time, and when I do, I'm in too much pain to do anything?

Anyway, I'll be back tomorrow at home (I'm a civil engineer working out of town), so I'll ask my girlfriend to write me her side of the story, but she'll be speaking through me since she's not fluent in english.

She mostly went trough pills and injections and she is still taking an every day medication, but I'd ratter let her tell you the whole story; I may have lived this experience beside her, but her firsthand version should be way more accurate.

Her rheumatologyst also suggested her that she should do more excercise, and since these days she has a very active life at work she may have that covered up until the weather heats up again and she gets back to swimming... Excersice I recommend to you guys, since it doesn't have an impact on your joints, muscles and body in general.

Anyway, see you guys later, but before that:

To Koski: How about showing us your artwork? I'd love to see your music-inspired drawings.

Yes, I'd love to hear from her how she beat this thing. That would be really great. C:

I know I should be getting more exercise, but it's hard to get started when I can barely walk most of the time. >__>

And also, yeah sure: http://koski-chan.deviantart.com/
There's mostly crap up there right now, though.

Maybe, maybe... I'm not that worried about if I don't get to do something I want in the future.I don't even know what I want to do...It's more of how I'll manage in general(Yes, my self confidence's very low)... Maybe I'm just thinking about that too early.

Also, I've been talking to this Finnish girl, who has diagnosed with RA not long ago. I can try supporting her and vice versa.

When I've been talking about my friends here, I wasn't counting the ones I got from this new school. They don't mock me or anything, but....Well, I don't get support from them either. I'm a bit like a lone wolf, to be honest. And some of them are 6-7 years older than me. I feel...awkward trying to talk to someone older than me about this. Doesn't seem right to me.

I guess Rheumatism's just business here. You can't as good as a treatment you could get from the RA hospital, Helsinki has opened Orton hospital for RA patiences. I'll be going there for a week in the summer again. Again, not as good as the one in Heinola, but it's better than nothing. And moving to Stockholm? Sorry, my Swedish isn't that good Jag talar inte svenska

I know that it might take time for my friends to understand, but it's been like this from the start. Nowadays I kinda don't expect anything from them anymore. I don't think that's a good sign...I feel like an asshole right now. Here I am, talking shit about my friends behind their back. How can I expect support from them when I do stuff like this?

Eh....yeah, still very confused what to do with my friends... Right now, I'm using music as my support. That's almost all I got.Well, that and you two, for now. Wherever I go, I have my mp3 player with me and my headphones on. People say I listen to music way too much(I'm listening right now, actually. And I'm not really following what's happening in class, either ) They don't really understand how much music means to me. It saved me from suicide once. I owe my life to music.

You shouldn't be too scared of this right now. It is a disease that comes and goes as it wants, so it's always going to be in the way one way or another. All you can really do is prepare for that as best you can.

Yeah, talking to someone else always helps, especially if they have the same disease as you. So good luck with that!

I guess it's a guy thing then. You could try opening up though, you'd be surprised of the places you can get support from. (Like what, random strangers on the internet? 8V)

Baaawwww. You should learn swedish and move here. Just like I technically should have learned to speak finnish what with most of my relatives living in Finland. >__>

Oh come on, your friends have done some really a-holish things from the sounds of it. You have the right to tell your side of the story, and honestly, what am I gonna do? I can give you an internet pat on the back and tell you to keep trucking. Not like it'll hurt them that some person in sweden thinks they're dicks. I complain about my friends too every once in a while. It's natural, even the best friends you have can do bad things every once in a while. It's okay to complain.

If music works for you, then I say keep doing it. Everyone has their own methods of coping, and not everyone will 'get it'. Me, I use music and art as a coping method, and not everyone else gets how much it does for me, but it doesn't really matter because it helps me. Music means a lot to me too, so I understand what you're saying.

I can't really give any life-altering advice, considering I can barely take care of myself right now. But I hope it helps a little at least.

 

[benjai]

I wish I could say something good, but heck, I'm not coping right now either. I'm looking on getting out of school because I just can't do it right now. But I don't know what to do with myself if I don't go to school, but I've been to school twice in the past two weeks and I was missing classes before that and I'm just in pain all the time. I've been drugged up the entire weekend, which in itself is horrible because it was me and my boyfriend's one year celebration (which at least went wonderful).

Today, sure, I'm in school, but I can't do anything. I can't focus, I can't work, my mentor talked to me before lunch and asked what's up since it's obvious on my attendance that things have gone to hell and they went fast.

The problem is I've been home and more or less in bed for three weeks (still gone out for walks and such) and I still feel like crap. All the time. I don't really know what to do anymore. At the same time, battling with Koski's damn doctors. UNGH.

 

[MrShowerHead]

You shouldn't be too scared of this right now. It is a disease that comes and goes as it wants, so it's always going to be in the way one way or another. All you can really do is prepare for that as best you can.

Yeah, talking to someone else always helps, especially if they have the same disease as you. So good luck with that!

I guess it's a guy thing then. You could try opening up though, you'd be surprised of the places you can get support from. (Like what, random strangers on the internet? 8V)

Baaawwww. You should learn swedish and move here. Just like I technically should have learned to speak finnish what with most of my relatives living in Finland. >__>

Oh come on, your friends have done some really a-holish things from the sounds of it. You have the right to tell your side of the story, and honestly, what am I gonna do? I can give you an internet pat on the back and tell you to keep trucking. Not like it'll hurt them that some person in sweden thinks they're dicks. I complain about my friends too every once in a while. It's natural, even the best friends you have can do bad things every once in a while. It's okay to complain.

If music works for you, then I say keep doing it. Everyone has their own methods of coping, and not everyone will 'get it'. Me, I use music and art as a coping method, and not everyone else gets how much it does for me, but it doesn't really matter because it helps me. Music means a lot to me too, so I understand what you're saying.

I can't really give any life-altering advice, considering I can barely take care of myself right now. But I hope it helps a little at least.

"I love zombies, horror, gore, steampunk and post-nuclear wastelands."
Okay, now I'm scared :L


Well, I guess we'll see what happens... Funny thing is that my mom actually wont allow me to move out thanks to all these things RA brings. First time I've heard parents want their kids to stay home

About those friends...I have a feeling I'm not going to see them after school. That's how things have been for now. Not sure if it's a "guy thing", more of a "me thing"...

Swedish is just so damn confusing :S I barely passed it at school

I'm not worried that you would tell them about that, because the chance of that happening is pretty low... Did I tell you they hate Sweden? They're those stereotypical Finnish people, who think Sweden is gay or something :S


Oh and this might sound kinda awkward, but I bookmarked this thread a while ago. I sometimes just go back here and read through this conversation. So it has helped

 

[Koski]

What's wrong with a woman enjoying her zombie apocalypse scenarios? 8V

I'm glad I've been able to help with at least something, and well, it's not like the thread is going anywhere, so you can always rant here if you feel like you need it!

Me, I'm still RAEGING over how retarded Malmö's health care is. And what a twat my rheumatologist is. And the fact that I haven't been able to feel anything in my toe for over a week now.

Does anyone have any idea what that could be? The toe thing, I mean?