Just wondering what really bugs you. Mine would be
1."You look fine"
2. "You don't look like you have anything wrong with you"
Hummm, what exactly does a person with RA and Chronic fatigue look like. Maybe I should'nt put on makeup, dress decent, or comb my hair when I leave the house. I think I'll start leaving the house in bathrobe and slippers.Maybe that would put an end to that dumb statement. LOL
3. people who constantly complain about this or that ache
Especially people who know how bad of pain we're in from RA. Do they really think they'll get sympothy from us.
4. or about how tired they are. (My personal favorite!)
If they had to spend a day with half as much fatigue as we face just to get through everyday, maybe they'd know what tired really was.
5. The wonderful comment of "my sister (or whoever)has arthritis and she has 4 kids, works full-time, volunteers, Blah, blah, blah.
Maybe your sister has a toe that hurts ocassionally that she likes to call arthritis. There IS over 100 different types of arthritis. I'm so please your sister is Martha Stewart. Could she make me and Crunchy a snack? LOL
Ok, vent over, I feel better. Lets hear yours, you'll feel better too.
feeling 90 #1 Oh my god!!!!! (pause, pause)....I dont know what to say....... #2 Can it be cured? #3 Can it be spread? and Im thinking... "dont say anything you F$#@ Head! NO, if it could be,Id be healed by now, and if only it could be, if only!!!!!! This is actual conversation between a "friend" and I.... Here's mine: 1. Mostly from my husband, who I know cares and means well. "How do you feel?" I feel like saying "HOW THE HE*& DO YOU THINK I FEEL?????" 2. Maybe you should take this vitamin or that herb, or I know someone that is on this or that diet. . . IF IT WERE THAT FREAKIN EASY TO CURE DON'T YOU THINK WE'D ALL BE DOING IT???? 3. You should exercise more. Hello, I walk to work everyday (10 to 20 minutes each way depending on how I feel) and while I'm there I'm on my feet and moving the whole time except when I'm on my break. I hate the exercise more remarks. I got a lot of those early. What other people don't understand is that you have to exercise differently. Like I do these really simple shoulder exercises that consist of barely moving my arm. It hurts. It's hard. And I feel like such a whimp. But I keep up with what I can. Second, I hate, hate, hate the well-meaning friend that wants you to go straight to alternative medicine when you know she doesn't have a clue and even buys you stuff that looks disgusting. She's not actually my friend any more. Or, the friend who lends you an exercise machine right after you get out of the hospital for chest pains. That one was bright. He's not a friend any more either. Then, there's my sister, a size 1 aerobics instructor (yes, Martha Stewart is raising her ugly head here) who when she sees me the first time after I get sick tells me, "boy, you've gained weight." Worse was my parents. My dad made fun of me not being able to use my hands. At that point, I couldn't even type on the computer without extreme pain. He gave me the speech how my grandma was so sick in the retirement home and never complained. Well, I know why. Because no one cared enough to listen. Duh! Or, this one's great. I'm staying at my parents with the hope of getting on disability. My 90 year old grandmother can run circles around me. She felt sorry for me. Not my mom. She said why don't I could crawl in a hole with my grandmother and just die. Love like that we don't need. Best thing--when my friends at work started caring my tray for me and driving me up to the curb when we went out to lunch and they didn't make a big deal out of it. Even better -- my kids, especially my son. They understand when I can't do, when I must take naps, can't drive because I just took something for pain. My son moves everything for me. He even comes over to my place and randomly cleans for me. Nothing is cooler than that. Hummm, what exactly does a person with RA and Chronic fatigue look like. Maybe I should'nt put on makeup, dress decent, or comb my hair when I leave the house. I think I'll start leaving the house in bathrobe and slippers.Maybe that would put an end to that dumb statement. LOL [/QUOTE] I think we should form a club that spends one designated day per week going around looking like total hell and campaigning about RA. Kind of like the Red Hat Society. We could wear our bras on the outside of our shirts and have crazy hair with little birds in it. We could smear our lipstick, makeing sure we had pleanty of it on our unbrushed teeth. No covering up those dark under eye circles, dont tye those shoe laces--you cant, you have arthritis. Instead of the Red Hat Society, we could call ourselves The Feels Like Crap Society. Do you think people would get it then?
Wow that felt good, Hutch Hutch, Feel the same way. Educating them is the only thing that works. State your case and then if they can't accept it, then stop everything. Go on strike. They either accomodate you or they can learn what life is like without your contribution. That's the whole thing about all this. Just because we can't do things at the same pace as before, it does not devalue us or make them better. Be the wonderful person that you are outside of this illness. Eventually, they will catch on that having you beyond your limitations is too special to miss out on. I have had people absolutely plow me down in public when I had a cane. Oh, do I love to make them feel bad. It is not vindictative, nor is it meant to be. But everyone that lives long enough is going to be disabled to some extent. We just got blessed with it early on. So, do them a favor and point that out. The way that they treat you sucks. Tell them it's not funny and what cads they are. You would correct a child. Well, they are old enough to know better. I don't blame you for feeling this way. When we met I had a muscular, athletic bod because I was active all the time. I put on 35 pounds from pred. So my dear sweet hubby has said several times on the phone - So now that you are off the prednisone - How much weight have you lost???????? UH Four pounds - I need a little more activity than I am able to muster to get my old body back Sweetie
Then he says - I know when I get back - (in six weeks now) you will have lost it.
My doctor says some people don't lose the weight even after stopping the prednisone. The fact that you already are is most encouraging. We don't have to be skinny beauty queens. Your husband is living in shallow land. My first husband told me I was fat when I was in my t 20's and weighed about 110. Prednisone really put the pounds on me. I don't even look the same. But I am not going to let some guy bug me about my weight. This is who I am today. Accept it or don't. Of course, I'm working on it. But who needs to be bugged about it. You just set his expectations differently. There is no way to lose the weight that quickly. Tell him how he makes you feel when he puts this kind of pressure on you. You are not even feeling good and he is concerned about your weight. First, let you get feeling better. Then, that weight will come off because you can actually move again. Men! Also, take a look at older people in their 60s and 70s. They don't just stop loving each other because they aren't as pretty any more. I was looking at this face surgical makeover the other day of a woman before and after. To tell the truth, I loved the before, because there was a gentleness to the woman's face. Our experiences change how we look. It isn't always for the worse. I think how beautiful my grandmothers were to me. Wrinkles were part of the expressions of their faces. Their weight wasn't something I would have ever been concerned about. That just made the hugs better. Life always changes. But sometimes what seems like a disaster is full of new opportunities we would have never have dreamed of. Let your life change. You're not going to be able to stop that any way. However, this is when I'm glad I don't have a mate. Only I get to tell me how fat I am. Oh, the doctor confirms it. Well, that's tough too because I'm doing the best I can every day. It is all you can do. You are very strong, Roxy. For the most part I just have juice popscles and fruit when I have the munchies. I am surprised myself that I have not lost more weight but I also got a cortizone shot. I don't think that helps the metabolism and I am not doing aerobic exercise, just low impact. I just wish they made clothes that were flattering for fat bellies or I would go screw it and just get new clothes
My hubby is a meat and potatoes man. He always complains about how healthy I eat as he wants some barbecue ribs and french fries. lol He has to go out to get them. He keeps his weight off because he is so active. I wish I could be
woobie
How do I explain that it's like a thief who comes sneaking in, at night, to rob me a little at a time. He places little bits of me in his sack. He leaves very quietly and waits in the darkness to take more.
His sack grows heavier with each visit until only I know how much has been stolen. I have change. I'm not the same. I struggle with everyday things and I constantly search for a way to recover what has been stolen.
Family and friends don't understand and they get angry. Their anger is directed towards me instead of my thief, RA. I can't force them to see what's happening. I can only hope that they can see what's in my heart. I'm still the same person!
I won't let my thief take away my sprit. He can slow me down and cause people to say,"What's taking you so long?", but I'm doing my best.
Marisa
Or, " I knew someone who had that,Oh my God!"
THe aghast look like I am shrivelling up right in front of their eyes is the worst actually.
I get the exercise remark constantly too. Like that will cure it
and I don't exercise already. Like exercise is the miracle that
takes all pain and stiffness away. I was doing great with walking
a good 30 min per day, then after one walk the joint at the bottom of
the big toe began to ache and swell, I walked again, and it got worse.
Great.
THank heavens for forums like this to keep sanity! Angie
I hate the rolling of the eyes. I get that a lot at work. Just after that very same person has complained for an hour about being tired or some pain they have. I work in a local hospital, in health records. One woman who I work with in perticular, does that a lot to me. One day she told me that her hip hurt. When I asked her about it, she said she couldn't walk because it hurt too much - and started walking like a mad fool around the department (speed walking. Not going anywhere, just walking in circles for about 10 minutes), showing everyone what she "can't do". It was at that moment that I wished my department was closer to psychiatry.
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