I just had a major heart operation and the sympathy and support was terrific, but now that my 'heart is fixed' and the RA is driving me crazy--no one understands. How can we explain, without needing to hit people over the head that we suffer from this 'stuff' every minute of the day??!! We do things more slowly, we can't move about and do housework, we can't get in and out of the car so fast, as we used to. OMG the list is endless and unfortunately people can't see WHY we hurt, why we are so slow, stiff and weird. My doctor's nurse saw me at the supermarket and said, 'oh, you must be better'. BETTER than what screaming in pain, not able to drive or move about, BUT I am STILL stiff and my fingers don't work, my feet are swollen...
Sarah
Isnt it strange that when we are trying to help ourselves and get on with life people think we are better, dont they realise that even when we are in pain, swollen and so very tired we still have to manage to live life . I went away for a weekend a while ago and it was said to me that I must have been better , the whole time i was away i cried everyday in pain but i had to do it as we had promised the kids and i am tired of letting them down Maybe these links will help you out. The first one is great for explaining our illness.http://www.butyoudontlooksick.com/the_spoon_theory/
http://www.restministries.org/invisibleillness/home.htm
I do a lot of things even though I hurt and can barely move. When I was at my worse and not as bed ridden, I would make myself get up and go to Freak-Mart with hubby and the kids. Even though I knew I would not even make it from the car to the front door of Freak-Mart without crying because of pain. I done it to exercise, as hubby put it
Pin Cushion, I know what you mean about the letting the kids down. I feel I do that everyday to my own, because I am not able to do what they want me to do. And yet they have a granny who can do 10 times more things with them than I can. I am mostly there to displine and tell them "no". Makes me sad that I have to do that.
I still have pain and the last week I have been crying a lot due to pain. And am almost to the point of calling RD for pain pills, as IBU is not working so well with the pain now.
Sarah aka hurts - I know what ya mean about the "Oh you must be better".... I usually answer with "Yeah for today, but probably tomorrow will not be so good." Then there are days where I think to myself that I have been doing good and maybe just maybe my meds are doing what they are suppose to be doing and I can finally get a job and get out of the house and have more money to do the things my daughter wants to do... like ice skating.... OH NO! I would not be ice skating.... I would be sitting there watching her. Or I could go to my daughters swim team meets, instead of sitting at home wondering how she done. I have yet to see her swim while she was on the swim team, maybe this year if we have the money to let her join the team again. Last year our neighbor paid for daughter to join, as so her daughter would have a friend on the team.
i think the biggest issue is that people arent aware of the difference of RA and other forms of arthitis. They think that its just pain here and there and if we take tylenol that it will go away, but its not. When people that arent informed about RA ask us questions, I feel that we are obligated to tell them what it really is. Its not just arthritis from playing to much ball or whatever. We need to take the time to inform people what RA (and other forms) really are.
Joonie I get it totally.
I don't know what to do about it always but I get it.
If your pride would let you - go in a wheel chair. I did part of the gem show in Tucson Az that way. But my pride would not let me use the rented wheelchair the 1st afternoon with our new friends - so I tried to walk through the exhibits for almost 3 hours. I was dripping with sweat, shaking, and right next to tears at the end. Crippled me for the rest of the week end.
If the subject comes up I say, "I have Rheumatoid' Arthritis and they say, "Oh, that's that really bad kind' , so who ever said it is right people know, but they don't know what we go through. We need an RA foundation, so we can get more help with new and improved drugs and treatment!, etc. Thanks for the responses
Sarah
I completely agree with Kelsaysmommy - people automatically think that arthritis means pain in a joint or two. They just don't realize that it is a systemic DISEASE that is attacking our bodies.We do have an RA foundation. There is a bill that is trying to get passed in the senate and the house (i have no idea how it works, will find out though) that is the Arthritis prevention and cure Act. I will find the link that i have that keepsp us up to date on what senators and representives from each state that has signed up to sponser the bill. There are still so many that havent . Some congressmen/women are VERY strict that they wont sponser a "disease specific" bill but what they dont realize is that "disease specific" bills help out other diseases down the road.I have just accepted it as a GIVEN. People do not understand RA. It sux. People treat me like I am sick if I use a cane or wheelchair but there are many days I do not need those things and I feel worse. Yep that is one of the tougher things about RA - unless you have it - you don't get itDo people really think, I'm using the wheelchairs for fun, tho I admit, I do enjoy them, lol. Just bc I'm in pain, doesn't mean I have to be mean!..
The other day, at the vets, she said you look really good... and bc she was a Dr.. i just was honest w/ her and said no, i'm really not doing good.. I have a worker, etc, and she was very understanding.
There is No way, I could do 3 hrs anywhere, walking.. sigh, I wish, but no.. i'm lucky to make it to the mailbox, every 2 days or so..
ohh Home Depot has the best.. fastest wheelchairs!!
weeeeeeeeeeee~~~~ lol
I have a friend w/ lupus and shes gorgeous!.. and its very frustrating also, for her, bc no one can see inside how bad she's feeling.
I know how it is whispered. I broke my knee and was in a cast from the middle of my thigh to my whole foot and it was in the winter time and I like to wear sweat pants. I could not do the crutches for very long because of my wrists, and hubby talked me into using the electric carts at Freak-Mart aka Wal-Mart, and I kept getting "the looks" because you could not tell I had a cast on and I was 22 at the time. Because of those looks I will not use another electric cart, and have not even when I know I will not make it thru a store, I just go find a bench and sit on it until hubby is done shopping.
When we were in HomeDepot over the weekend, I knew I could not make it pass the front doors and I just walked straight to their outside furniture and sat there while hubby and the in-laws were looking for stuff. I am do that most of the time, I just go to get out of the house, even if my feet, ankles, knees and anything else that is hurting me that day, I just find some where to sit and wait on hubby.
One day...just one day...I want to throw politeness to the wind and really tell these people off that give me dirty looks lol. Since I use the electric carts no matter where I go and zip around the store away from my slow shopping husband I get weird looks. Just one day I wanna yell...IM SICK BUT YOU CAN"T SEE IT ITS ON THE INSIDE!!!!
Gee I feel better now lol.
I LOVE THE CARTS. It is sad more places don't have them. They make what becomes a painful chore that I pay for later -a fun and "painless" experience. Screw those dirty looks I just roll my eyes at people. However, my very protective 14 year old WILL say something to people like..."what are you looking at she can't walk well." People just then turn away embarassed they got caught lol.