Hi! I am 21 years old and have had arthritis since 19. I had to quit my job at a bakery because i couldn't stand and walk for long hours. I limp constantly and sometimes need to walk with a crutch. And I already have damage to my ankles. I have recently come to the fact that I probably will never run again. I am looking for some advice. How do you not worry about the future? How do you guys keep feeling young? I don't want to loose the person I once was. Any comments would be helpful. Thanks
I am in my late twenties, and it helps me most to exercise in the ways that I learned in PT. It hurts to get through the stiffness most days, and I sometimes can't do nearly as much as I think I should be able to, but I know that I'll keep way more of my mobility if I am as active as possible. :) Were you super active before? I bet that if you got some new moves from a physical therapist, you could find ways to be active that don't stress your ankles too much. I sometimes get all worried about stuff- I got really depressed for several days when my occupational therapist told me I wouldn't be opening new jars, of all the things to get upset about- but there are so many ways to work around stuff. I usually do my cardio on a recumbent bike, because it doesn't stress ankles or hips or knees too badly.
I worry about the future. I worry that I'll be a burden to my family, and that I won't be as attractive to my husband because of the disease. But I know that if I keep up my end of the bargain- doing what the doctors say, exercising, and eating well, I will in all likelihood be just fine. Most people live really well with this disease. It's just a bit more work for us than most people.
Thanks for the help Rosen:)
rosen said:
I am in my late twenties, and it helps me most to exercise in the ways that I learned in PT. It hurts to get through the stiffness most days, and I sometimes can't do nearly as much as I think I should be able to, but I know that I'll keep way more of my mobility if I am as active as possible. :) Were you super active before? I bet that if you got some new moves from a physical therapist, you could find ways to be active that don't stress your ankles too much. I sometimes get all worried about stuff- I got really depressed for several days when my occupational therapist told me I wouldn't be opening new jars, of all the things to get upset about- but there are so many ways to work around stuff. I usually do my cardio on a recumbent bike, because it doesn't stress ankles or hips or knees too badly.
I worry about the future. I worry that I'll be a burden to my family, and that I won't be as attractive to my husband because of the disease. But I know that if I keep up my end of the bargain- doing what the doctors say, exercising, and eating well, I will in all likelihood be just fine. Most people live really well with this disease. It's just a bit more work for us than most people.
I’m glad that someone young piped up first. Not being young myself, I have no cred at all giving advice on this topic. But if I did, I would say exactly what Rosen has said! Exercise,good nutrition, adquate sleep and aggressive therapy keep me feeling … well, if not young, at least my age instead of a fossil.
And don’t underestimate the importance of attitude: you CAN do this! You CAN look after yourself so that you live well despite what PsA throws at you. (And we know only too well that PsA is very good at providing headwinds and obstacles.) We all have our woe-is-me moments, our pity parties, our whine and cheese evenings! Come here to vent. We get it! But at the end of the day, there’s only one person who can conquer this. And you know who that is.
I’m glad that you found us, Charlieboy. Did you know that we have a group for our youngest members? Go to GROUPS in the green band above, click on it and scoll down until you see “Young Fighters”. Ask to be let in and it will happen.
Take care of yourself as best you can and squeeze in whatever activity you can that doesn't hurt. I got a little "Stride cycle" to use when I couldn't bear much weight and I used that while watching tv. (Its a cheap set of pedals without a bike, you can use it on your upper body too.) Even though its hard to get motivated, a little burst of activity can give you some endorphins and make you feel better, providing you're not hammering sensitive joints. Try to stay positive, worrying about the future doesn't really accomplish much besides making you feel bad about yourself. Just manage the disease and hang in there! You're really young and the drugs get better and more advanced every day, so you will benefit from that once you find a regimen that helps.
Bakery work is exhausting for anyone. Aside from the good advice you have been given that activity makes the difference along with good diet and meds, what are your plans? School? Career?
One thing that may be of help is to contact your local vocational rehab program. There is a lot they can do to help you insure a good future and help you pay for any career training and physical rehab you may need.
Hello,
I've seen this thread when you first posted it but I couldn't bring myself to read it, let alone answer it then, because I was feeling quite lousy myself... And in fact, asking myself the same question.
I am 27, (I was diagnosed very recently, when I was 26) and gradually feeling older and older has taken its psychological toll on me as well. I have cried and become depressed and tried to alienate my boyfriend, and screamed at my mother... you name it. The thing is, and although I want to tell you it will all be all right, we will probably grieve our young and energetic bodies from time to time... I have accepted that. And I think accepting that you have to adjust your body and your mind to these new conditions, even though they are far from what you thought your life would be like is the first big step we have to take.
But you know what? Two weeks ago I was wondering if I would ever be able to walk normally again, and today I realized suddenly that I was walking really fast. And the thing that really helped me psychologically was trying to keep as physically active as I can. Even if what I did was only some gentle stretching with my feet up the wall! I'm doing yoga (this is the second time I have mentioned yoga today) and I think it is a wonderful exercise for people like us because you can do it as gently or energetically as you want. You can choose your pace, and you are allowed to listen to your body and adjust yourself according to its needs. So I began doing yoga again (I was quite a yogini before the arthritis kicked in), even though what I managed to do was far from what my body was capable of just a year ago, and saw that I wasn't dead yet! I could still move my body, and the long stretches made me feel calm and at peace in my body. So move! Move your body! Lie on the bed and pull your knees to your chest if that is all your body is willing to let you do that day. Because as I moved more and more, I began feeling like myself again. I still have aches and pains, that never goes away unfortunately, but from time to time, I have this feeling that I will be OK, no matter what.
And hang on to the positive thoughts... I'm not telling you to be perky all the time, and not to mind your disease or your suffering... because I can't do those things myself. But, when you feel like a cloud is lifted from above you, and there is an easiness in your breath, and you will feel like that if you haven't already, hang on to that feeling as long as you can - then, it will get much easier, I promise you!
So glad you are in a better place ladylazarus, and great advice…I’ve started yoga too, and you are right, it can give a great feeling of peace and being at home in your own body 
The best thing about yoga is yoga pants and being in the back of the room for class.......................
Nice to see more of you louise, seems you are finally feeling better again I hope!
Dear tntlamb, the best thing about yoga is savasana, where you lie down at the end of the class arms and legs stretched out and the instructor tells you to relax as much as possible... now who wouldn't love such an exercise? :P There were days that I would only endure the class for the lovely savasana! :D
And thank you Louise, I too have my ups and downs. I was sleeping in the tram today and I wasn't even sitting down, but no one realized because it was really crowded :D You gotta laugh at these things at some point!
Haha I just thought of something REALLY funny. Tntlamb probably only prefers to be in the back of the yoga classroom when he's behind fit young girls. I doubt if he'd be so enthusiastic sitting behind a bunch of old out-of-shape ladies (such as myself) Omg what a turn off-unless he has one hell of a good imagination (my husband does--wink, wink)! Gag me.
I’m doing ok lamb x and I was told last week by a patient in his 40s that he thought I was his age…asked him I he’d had his eyes checked recently!! But I feel, mentally, much younger than my years, I laugh, sing loudly (and badly!) with my music up loud, exercise most days, have the occasionally wild night out, see my amazing daft fantastic friends as often as I can, appreciate my lovely fella, and above all, love myself for who I am…pain, lumps and bumps and all
It’s those boys of yours help keep you young too, Louise!
Lol they sure do…thats why I laugh so much!! Cant tell you what they did on mothers day!! But I actually ended up with a sore chest from all the laughter!
Silly grandma. There is no way I'd want to be in the front of the class and I'd wear the spandex britches 24-7 if I could. They feel great on these soon to be replaced hips along with several other splints. Unfortunatly I have learned they are too hot to wear under a suit and I'm afraid of sending my grad students screaming from the room, and these are kids who have spent quality time with a cadaver. Some great statistical opportunities though. My classes are sponsored by the arthritis association BTW. They sponsor free programs in most communities. Worth checking out.
Grandma J said:
Haha I just thought of something REALLY funny. Tntlamb probably only prefers to be in the back of the yoga classroom when he's behind fit young girls. I doubt if he'd be so enthusiastic sitting behind a bunch of old out-of-shape ladies (such as myself) Omg what a turn off-unless he has one hell of a good imagination (my husband does--wink, wink)! Gag me.
I was always in the front of the class - omg I just realized I was a nerd even in yoga class!!!! :D
tntlamb said:
Silly grandma. There is no way I'd want to be in the front of the class
I hope that Charlieboy got the answers he needed here. There's no magic bullet. It really is all in the attitude you take to approach your wellness (see, like talking about being well instead of ill). I'm no spring chicken and by nature I'm not a glass is half full person but when you embrace and magnify the things that you CAN do and let go of and stop mourning after the things that you no longer do, well, that's a life-changer. Please remember that you can and should let others help you, whether that's because you can't reach, lift or manage something, or because you need to talk about how you feel makes you feel. Good luck Charlieboy.
Haha, I guess I had you pegged all wrong then. Sorry! I'd definitely be in the back of the classroom, too. I could use some yoga or some sort of exercise. I'm always too worn out lately between my job and entertaining grandkids, etc., to take time for any type of self-improvement. Someday.....
tntlamb said:
Silly grandma. There is no way I'd want to be in the front of the class and I'd wear the spandex britches 24-7 if I could. They feel great on these soon to be replaced hips along with several other splints. Unfortunatly I have learned they are too hot to wear under a suit and I'm afraid of sending my grad students screaming from the room, and these are kids who have spent quality time with a cadaver. Some great statistical opportunities though. My classes are sponsored by the arthritis association BTW. They sponsor free programs in most communities. Worth checking out.
Grandma J said:Haha I just thought of something REALLY funny. Tntlamb probably only prefers to be in the back of the yoga classroom when he's behind fit young girls. I doubt if he'd be so enthusiastic sitting behind a bunch of old out-of-shape ladies (such as myself) Omg what a turn off-unless he has one hell of a good imagination (my husband does--wink, wink)! Gag me.
"I don't want to loose the person I once was."
hello!
i am a bit late to this discussion party buuuut. as a 28 year old who as little as a year and a half ago was living at an astoundingly athletic pace.-I was for two winters living in Utah working at a restaurant at the ski lodge at the bottom of the hill and skiing around trees and rocks in the steepest of steeps almost every day. (with a mouth guard in looking for cliffs to fly off) and then the summer after that I lead a group of middle school students on a 200 mile bike ride from Seattle to Portland to attend an international conference.
when i cut to my life now it looks a lot more like sleep, MTX side effects, so many needles, a revolving door of trying drug after drug (dont get me wrong, i am !very! thankful i have a kind and compassionate Rheum willing to fight with insurance companies on my behalf)--sadness, therapy sessions, and boooooooring PT athletics when i actually feel up to it, recumbent biking at the stupid stupid gym with all of those smelly boring gym people (no offense to anyone!) This is my new normal and it is a tough pill to swallow-(or rather-needle to jam into stomach).
i think as young people (or any people really) we will inevitably at times feel like planes shot out of the sky especially when we compare the before to the after. I have to remind myself that the hopelessness that I often times feel as a result of my new circumstances is totally normal and most certainly ok.
i think a big part of where i am at now is aiming to be nice to myself no matter what happens. (I fail constantly at this) but i try again. I think it has been of ultimate importance and it has determined (i think) the "advanced" in what i call my "advanced beginner" stage of this whole disease thing.
sometimes you just have to be angry.
and to forgive yourself for this.
http://effthisra.blogspot.com/-cuts to the heart of this nicely.
...
hopeful and uplifting comments from others on this website and in real life can CERTAINLY help, but feelings of "WTF!-this is NOT how things were supposed to go!" are bound to at times cancel out even the most caring and kind-hearted advice from the most well intentioned folks.
I now think that for me-anxiety, fear about the future and raw anger are a BIG part of what this disease actually means from a human point of view. I (mostly) love my doctors, but they are trained to keep a safe emotional distance from their patients to protect themselves. They think clinically because that is their job. much of the emotional part of this whole disease thing is really not about the side effects, or the sed rate, or rheumatoid factor. for me it is has been about Struggling to find Some moments of peace despite the hurricane. I feel that after nearly two years in I am just beginning to find introductory level footholds of this. I spent a lot of time after diagnosis (when things were the absolute worst) just reading this website and others like it. scanning. not ready to write because by doing so I felt that i would have to commit to a broken identity that was so far away from how things were supposed to go for me as a gregarious life loving athlete in my mid twenties.
no ones life turns out exactly how they planned it. this is true for healthy people as well as those with PsA.
wish you the absolute best.
ohh. and my gym (stupid gym) has a sauna and that helps me out a lot... i also dig the acupuncture thing (community acupuncture is way less expensive if you have it in your area).
-david.
random !GREAT! thing from one of my faves
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 !