For me is so frustating that my friends cannot understand i cannot go dancing and be standing up all night long..and have alcohol with my medication or for example if i work from 9 am to 6 pm i cant do anything else during the afternoon ....
everyone thinks because im young i have to be healthy but is hard when you are a line (in the Bank for instance) and you have to ask someone to let go first cause you cant stand being there...
i get sad a lot cause i feel im not doing what my friends do and i cannot live as a normal young person ...here in argentina is even worse cause young people go out from 1 am to 7 am and hung out every weekend and i feel im being on left outside ...cause there´s a lot of things i cant do
I am really sorry that you are going through this and you will learn who your true friends are, keep them well informed about the disease and how it affects you.Its horrible to have this at a young age especially when you want to be out partying with the rest but you have to take care of yourself first.
Take care
I am sorry you have this disease at such a young age.Take care
A lot of people have a hard time understanding how we feel and what our limitations are. There is a website that really helps explain this to our friends and family. it was written by a young woman with lupus that has the same problem that you and all of us have or had. I also printed a copy of this for my 12 year old daughter who was diagnosed with JRA (juvenile rheumatoid arthritis) not that long ago to help her explain to her friends what we deal with on a daily basis. It has worked wonders for her.
The site is www.butyoudontlooksick.com Check out The Spoon Theory. It really does work!!!
Give your friends a bit of a break because before we got sick most of is didn't get it either. I know we all want to say that we did but we didn't because until you go through it you don't understand it.
True friends will empathize and be compassionate. So so friends and acquaiantances will often go by the wayside. Our attitudes and personalities wll often dictate how our friends deal with us more so than what we can do. If all we do is talk about how bad we feel, how what we can not do then people don't want to be around us. Heck I don't want to be around me when I get in that mood.
Sometimes we have to get creative in order to stay connected. Instead of saying yes and knowing you will pay for it or saying no to avoid it all together, talk to your friends honestly about your limitations to see how you can work around them. For example instead of Honey totally skipping the Breast Cancer walk she could have rented a scooter for the day or maybe her friends would have volunteered to push a wheelchair if they had been told she couldn't walk that far. If party time in Argentina is from 1-7 then you sleep until midnight. Maybe you go to 3 bars instead of 6. Drinking alcholol is not required to have a good time even if everyone else is drinking. As Rocky said there is usually at least 1 other person that doesn't want to keep up the same pace.
Don't focus on the "can'ts" in life; focus on figuring out the hows.
But its ok to get sad and mad every now and then because it isn't fair. But getting mad and sad doesn't change the fact we have to figure out how to live successfully with this disease.
Well said Buckeye! I need to print that out to keep it with me as a reminder.Deanna, Lorster, Pin cushion,Cassandra, Honey,Becky, Grandmmaskitties and buckeye....THANK YOU FOR YOUR SUPPORT...
I know you are in the same situation and that s why i feel lucky cause i can discuss this with people who know what i am talking about...we dont have an arthritis association...herethey dont even have a program like remicare or the other for humira...we just have to pay...and is so expensive! think that our peso is 1 dollar= 3 pesos so, is three times expensier than for you guys...!...
Honey, i used to run 10 kilometers every day and now i can walk two block in 30 minutes :( but at least i can do it ...there was a time when i couldnt even work or go out of my house..but know thanks God im ok and i can walk a block or two..sometimes even more ...and the thingis worse cause due to cortison i have 10 kilograms more so i felt sooo ugly and fat..lucklily with Humira i could stop using cortison and i only take MXT and Humira....so i have 5 more kilograms to get rid off...i know is not a big issue (i mean to have extra kgs) but for me it is cause it contribues to make me feel down...
i started teraphy to understand and to accept RA and to learn to be happy no matter what and i am trying guys! but sometimes i need to tell someone how i feel...thankssssssssssss
It is defiantely no fun not being able to do all those activities that I used to be able to do. I try to take it in stride, and I do get left out of the loop of some of my friends but figure,.....oh blah and blah, it is not worth being ever so ill when I do go out and do things.
Oh I will have a glass of wine from time to time but that is the extent of it. It just doesn;t do much for me anyway. I focus on what I can do health permitting and I am fortunate that I can still yag and nag about having to do the mowing ( and shoveling of snow) and I gripe about laundry and my daughter leaving a mess, but I am just thankful she is around for me to gripe about her not cleaning up her mess.
Oh I want to do things, but just like the other day when my daughter could not drive home all the way from visiting her dad's in Indy, her bfriend and I had to go down to the rest stop where she finally stopped because she just couldn;t drive anymore . Her bfriend drove her car back for her. THe drive was all in all too much for me and I was in so much pain but I tried to enjoy the scenery and all the sunshine and was really glad it was not raining or blowing snow. Actually it was a nice change of pace from nonstop work here at home.
It is difficult when your friends do not understand, I have already been through that and even though it cuts like a knife, you still have worth and you still have your life to lead. It may nto be what you are accustomed to, but try to make it fun and a happy time.......this may very well be the best time of our lives!
jode
I know what you mean, Honey, Friday I had a bad day. I can't understand what is going on with my meds, but they aren't lasting until the next dose?! When I was at my art group I could barely draw and paint (I need to stand up for 3 hours!) By the end of the class I was exhausted. I just blurted out 'im really tired today"......and then I thought, wow, that was dumb, I just should have kept quiet. I save my moaning for my poor husband, son and this forum. Other people don't want to hear 'it'! Also they have their own problems. (one guy was attacked at a street corner in our town by a crazy and has a terrible back problem, others have their own issues, one guy is 91 years old....so , my RA doesn't seem so big to them, one sweet woman said, "you are having a low energy day?" Right!
Sarah
I hear all of you. I teach classes that include medical terminology, pathophysiology, anatomy and physiology. My students know what RA is, we study it and the books have some very graphic pictures of severe cases. I don't say anything to new classes each quarter, but it is obvious that I limp sometimes and have problems holding a marker or passing out papers. Inevitably, someone will ask if I hurt myself. I do tell them then that I have RA.I'm still trying to deal with "feeling like a schmuck" when i say I can't do something, go somewhere, have a drink, go to a party, etc. I'm not sure anyone (with the exception of you guys) that really understands. I have a great friend who is patient with me, although i'm sure she gets frustrated when I say I can't do something that she may think is "simple". I was with her this weekend and went to a store with her. I really wanted to cry; my body was aching, I was exhausted, I was very hot and my stomach was doing flip flops. I just didn't want to say no again.
I was supposed to go to a family baby shower this weekend. I called and cancelled a day before. It was a 3 1/2 drive one way. I was really thinking that I would push myself and go, but when I thought about it, I knew that was foolish thinking.
I know that I should be thankful for all I can do, but I have my moments where I want to throw myself on the ground kicking and screaming like a little kid. It's hard being 45 and not have the energy to go to a movie after work, or make a nice dinner and be able to do the dishes, etc.
No easy answer I guess, just be thankful we have eachother here that can truly understand our positions.
In the meantime, i'll keeping pushing on. I'll do what I can (not much) and put a smile on my face. As my friends tell me...that's part of the problem, lol. I'm always in makeup, hair done and a smile on my face. People don't realize I don't feel well.
[QUOTE=maryblooms]I hear all of you. I teach classes that include medical terminology, pathophysiology, anatomy and physiology. My students know what RA is, we study it and the books have some very graphic pictures of severe cases. I don't say anything to new classes each quarter, but it is obvious that I limp sometimes and have problems holding a marker or passing out papers. Inevitably, someone will ask if I hurt myself. I do tell them then that I have RA.
I have another disorder which is dyslexia which I tell them about the first day in a joking manner, so when they catch me spelling something funny they can point it out. Of course, I also tell them to double check their grade and let me know if I wrote down a 39% instead of a 93%
thanks for your answer....
[/QUOTE]
Honestly before I was dx with RA I didn't have a clue what it was either. If I would have meet someone with RA and they felt like I feel right now I would have thought they were either lazy or a hypochondriac.
I know better now...but I don't expect other people to understand my situation. I hope they never find out what it feels like to be me. I've have had to deal with issue since I was a little kid. I still don't have the answer. But I try to participate whenever I can. I've become much more open about having RA, some people catch on rather quickly, others never do understand. As long as my husband understands, I'll be OK. I find myself blurting out that I have RA sometimes to "justify" my odd behavior (memory problems, not being able to open bottles, etc). Even though, deep down, most people don't understand. I still feel the need to "defend" myself sometimes. Phats
and also the fact that it is so disregarded by most people I want them to understand, not pity, just understand.
I now dont feel guilty about trying to explain RA and I do hope that the more people that 'get' it the easier it will be on all of us.
I think it was Sophistablack who posted she says she has rheumatism, a blood disease - it is the arthritis word that gives the impression of a slight twinge.
The Arthritis Associations around the world need to be promoting a name change on our behalf - lets hope it happens. The loss of power and having to 'ask' so often is demeaning and frustrating & means we are often on the defensive.
I do know what you mean about blurting it out & then I feel in victim mode so I have found just explaining it whether the person listens or not is up to them.
Good luck.Boy do I get this thread completely. I am still young-ish and had JRA but it when into "remission" from the time I was about 11 until my mid-late 30s. Now in my mid 40s it is very active and truly has caused me to stop almost every activity, hobby and even forced a career change.
I am still in decent shape (but a bit heavier then a few years ago) and can pick up heavy things...once then I am done for a week. All my neighbors see is a big strong guy who can lift heavy objects or work all day on their projects. And friends still see me for who I once was...I do not fault friends as it is nice they do not look at me differently. But the neighbors are often down right insulting. Several have gone so far as to bluntly say I am lazy.
They really do not understand the difference in RA and OA in terms of the added problems beyond the joint issues. I have been patient with most of them but a couple of the know it all old geezer guys learned I can be pretty down right nasty if they are too rude and do not learn when to shut-up. hehehehe... ;)
I like the idea of not presenting an explanation at all or using either RD or rheumatism instead of RA. I have long thought the arthritis part misleads so many people. Plus everyone thinks all we need is some aleve and we should be just fine...if not we are lazy...
I did take some particular glee (I know, I am a bad, bad person...but, hey it's FUN!!) in a recent turn of events for the nastiest old-geezer-next-door. He suddenly developed a severe issue in his shoulder involving his tendons/muscles & possibly the joint. He could not use his arm at all really plus there was no relief from he pain...it went on for several months. All I said to him was that if he had actually tried to listen to what I was saying when defending my existence, that he might not have been punished by his gawd for being a turd to me... ;) Of course that was sitting on my porch while we were having an iced tea...and with a smile. He really took it to heart when I mentioned that all he needed to do was imagine having that pain everyday for 30-50 years, depending on when I croak, to have an idea what it is like to be "one of us". So in the end he came around and now is as understanding as can be...
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