I just have to say, Jen, you are so right on that by middle-age almost all of us are faced with some sort of calamity that causes long-term emotional or physical hardship. Normally, though, this doesn’t happen to young people–or it comes on more gradually and we adapt.
When you’re stricken with a disease that is stealing your youth, it IS depressing, and very much more so when it’s stolen during your youth. I couldn’t even imagine how I would have handled PsA had it happened in my 20s! I’m sure I would have fallen into deep depression! It was hard enough dealing with psoriasis then.
Charlieboy, somehow things will improve. Acceptance will come. You will adapt. There will be meds that actually help. At your age, it’s very important to fight the disease aggressively to avoid further damage to your joints. I hear you about limping and using a crutch. It sucks. Even at 61, I don’t think it’s fair when I see people older than me in better shape. My mom is 90 and has never had foot or back problems and runs around like a chicken with its head cut off. That’s when you ask, why can’t that be me?
PsA is very scary, and I hope you are finding ways since you started this discussion to overcome the despair you had been feeling. You are not alone and there is good advice on here. This group has done me so much good. I hope you’re feeling better!
Jen said:
David, I think so many of us relate! I think a big part of it is “trying to be nice to yourself” as you say - my husband has helped me amazingly - when I get down on myself and comment that I’m not very useful anymore and I can’t think clearly, he always says to me - well you always thought ten times faster than the rest of us - now you know how I feel every day! Lol, what a lucky girl I am.
But aside from the flattery, my lovely husbands point is a real one we can all learn from - most people, by the time they get to mid-life, have at least one major something - autoimmune disease, cancer, major depression, anxiety, or a Spode or child they have to support through it. Most of the time, you never hear about it, not at the grocery shop when you ask how they are, not at work, because none of us want to admit weakness, not even your little kids teacher…
So one of the ways I feel young, is to remember, it is never just me !
Dear twentysomethingdavid,
I agree with you, just like Jen, when you talk about trying to be nice to yourself - I sometimes have to remind myself that it doesn't matter if other people "get" my disease or support me or not, as long as I'm not supportive of myself! It doesn't matter at all, if I'm not as loving of myself as I am to other people... but it's a great challenge to "love yourself" when your own body has turned against you.
Jen, I was thinking about what you said a couple of days ago... that I would have this disease or that in 15 years anyways! It's just having it this early that makes it this big of a challenge... Like Grandma J said, I haven't had the chance to adapt until it just decided to become the biggest part of my life out of the blue... I just wish I had a couple of more years before I was worrying what my life will be like in ten years... I'm at an age where I'm supposed to make plans about my career and stuff, and not wonder if I should move to a place with warmer climate, I should have been doing that after I had retired, not when I still don't have a job :D
PS - reading twentysomethingdavid's post made me realize something... did you guys realize that most of us - especially the ones in their twenties and thirties keep on talking about how active we were right before our diagnosis? That we were engaged in some kind of athletic activity? I mean, I wasn't running the marathon or anything, but I was doing an hour and a half yoga exercise every day, and believe me, an hour and a half yoga exercise does qualify as athletic activity :D It just made me think how people keep on talking about how maybe I exercised more I wouldn't have this - and here I'm NOT talking about exercising to stay strong and hopefully less in pain and so that our range of motion doesn't get affected, I'm aware that exercise might be the best weapon we have against this disease. I'm talking about ignorant people who seem to think if I ran for an hour everyday and ate more veggies I wouldn't have this disease. I mean, I WAS an active person who was trying to be healthier. It just happened anyway. I wanted to get that out of my chest also, sorry :D
LL, your PS has raised my eyebrow. I have noticed that, too, and you know what? My cousin came down with really bad fibro in her early 30s and her mom (my aunt) always thought it had something to do with that she was such a "jock" up until the fibro hit her! I have another cousin who has sclerderma--which is a horrible autoimmune disease--and that hit her in her teens, while she was very athletic in high school! I, myself, worked harder than my siblings--did lots of "man's" work with building our houses and all the upkeep and yard work (we have a huge yard) along with all the housework and raising our four kids (my husband was at work a lot, and when he was home, he didn't get involved). Sometimes I would feel really crappy for a few days after doing a lot of physical work, but then I'd pop back to normal. I did have some unusual pain that would last weeks over the years, but things always resolved themselves and I didn't really doctor for most of those aches and pains.
I know yoga is very difficult--my daughter who's now 30 was doing it for awhile and I always wished she'd stop. I thought it was too hard on her body and I actually worried she'd trigger something bad with her health. She is rather frail--even though she was a gymnast and dancer through school.
And, unfortunately, no amount of veggies or exercise will stop the disease. While they may make you generally healthier, they are not going to get rid of the disease. If only it were that easy! :-( Rheumys would be out of a job!
ladylazarus said:
Dear twentysomethingdavid,
I agree with you, just like Jen, when you talk about trying to be nice to yourself - I sometimes have to remind myself that it doesn't matter if other people "get" my disease or support me or not, as long as I'm not supportive of myself! It doesn't matter at all, if I'm not as loving of myself as I am to other people... but it's a great challenge to "love yourself" when your own body has turned against you.
Jen, I was thinking about what you said a couple of days ago... that I would have this disease or that in 15 years anyways! It's just having it this early that makes it this big of a challenge... Like Grandma J said, I haven't had the chance to adapt until it just decided to become the biggest part of my life out of the blue... I just wish I had a couple of more years before I was worrying what my life will be like in ten years... I'm at an age where I'm supposed to make plans about my career and stuff, and not wonder if I should move to a place with warmer climate, I should have been doing that after I had retired, not when I still don't have a job :D
PS - reading twentysomethingdavid's post made me realize something... did you guys realize that most of us - especially the ones in their twenties and thirties keep on talking about how active we were right before our diagnosis? That we were engaged in some kind of athletic activity? I mean, I wasn't running the marathon or anything, but I was doing an hour and a half yoga exercise every day, and believe me, an hour and a half yoga exercise does qualify as athletic activity :D It just made me think how people keep on talking about how maybe I exercised more I wouldn't have this - and here I'm NOT talking about exercising to stay strong and hopefully less in pain and so that our range of motion doesn't get affected, I'm aware that exercise might be the best weapon we have against this disease. I'm talking about ignorant people who seem to think if I ran for an hour everyday and ate more veggies I wouldn't have this disease. I mean, I WAS an active person who was trying to be healthier. It just happened anyway. I wanted to get that out of my chest also, sorry :D
Well, Grandma J, I used to be really athletic as well - I did all kinds of sports including volleyball, handball, athleticism and even gymnastics! I danced, I ran, I flipped... The only sport I didn't do was basketball and that was only because I couldn't dribble and watch where I was going at the same time :D - . So looking at myself now, I wonder if we all get a certain amount of energy and physical capability when we are born, and some people just use it up before others do! I know that's not the case but still... One wonders.
And lately I also wonder if a lifetime of injuries (sports injuries) have somehow made me more susceptible to this.