Some people just don't get it.....how frustrating!

It can be frustrating!!! Sorry to hear that you are flaring..I have RA and just this morning I woke up and mentioned to my husband that I felt really stiff and he actually asked me why? are you kidding me? Hello? Sometimes I Just have to shake my head! It is true if you don't have it you just don't get it.  Sorry you had to be so blunt with your friend but sometimes you have to be.

I noticed that you also take vitamin b12 injections? how often if you don't mind me asking? and how long did you have to take them before you started feeling better?

I know! People just forget how bad it is, no matter what you say, or how often you say it. It's very frustrating.

Even though on a personal level it is often as frustrating as hell, I am eternally greatfull that none of my family understand this. I would not wish this on my worst enemy and do not even want them to understand that it is possible to be so fatigued and in so much pain that picking up the glass on the end table next to me can require so much effort that I would rather sit there and suffer from thirst then pick it up and drink.

My husband and I are taking a class at the local community college and the instructor is great, but one time I was there, I really over did it, and when I went in the next time, after taking a break she asked me if I were sore and I said yes (she knows I have RA) and she said she has been there!!! and I thought to myself, no you haven't!! every part of my body hurt, it was awful, and most of all frustrating because I can't go to the gym like other people and work out, without sometimes being unable to get out of bed the next day! That is what I find so depressing at times, having to be careful about what I do, while others there are running on the treadmill etc  

This disease, the RA, is just so frustrating. I was diagnosed 3 months ago, and currently take MTX, folic acid, and prednisone, along with other meds for other problems. I'll be starting Remicade in a couple of weeks. From explaining it over and over to people who don't have it-"it's not just arthritis, it's an autoimmune disorder like Lupus where my autoimmune system has gone bananas and it's attacking my healthy tissue" (that's more or less what I say in a single breath to anyone who asks or comments on the wrist and hand braces have to I wear most of the time).

My parents finally get it, more or less. At least they know it's a serious disorder, but when I showed my mom the list of meds and supplements I take every day (16) she nearly fell over. I do make a point of explaining to people that it's an autoimmune disease, though. That seems to impart the knowledge that it's serious stuff, not something I can just get rid of by using Ben-gay, although a surprising number of people actually believe that it can cure me. Then I have my good days, and I start thinking "I'm not really that sick, I should be back at work" and I feel so guilty for not being at work because I know they need me (I'm currently on short-term disability from work, until mid-September) and suddenly my energy level plummets and I have to go home if I'm out, or lay down if I'm at home, but it's still hard to shake the guilt.

I've just resigned myself to the fact that some people get it (in their own way) and some people don't. You can see in my signature line that I'm a recovered alcoholic with 15 years of sobriety, and even though I consider myself recovered, I'm still an alcoholic and a lot of people just don't get it, so I'm used to that kind of reaction. Maybe that's why I have accepted that some people, no matter how hard you try to explain, will just not understand. Others will, but you really learn who your friends are when faced with something as serious as RA. And that's my two cent's worth.

I'm new to RA and already it is exactly what I go through with my 9 yr old son's Type 1 diabetes. Everyone says oh you just have to watch what he eats and he'll grow out of it . They are of course seeing the commercials for type 2 diabetes. I always have to explain it is an autoimmune disease and that his pancreas has been attacked and doesn't produce any insulin anymore. He will not grow out of it and it is a 24 hour/day job keeping his blood sugar in check by watching his activities, moods, weighing and measuring all his food, etc. If I don't do all that then he is at great risk of blindness, amputations, heart disease, etc.

NOW I get double frustration having to tell everyone about the difference in arthritis.



I have to try and bite my tongue a lot. But I have been changing my own attitude about it lately too. I figure this person really doesn't know the difference and they are innocently saying their remarks. They aren't out to offend us so i try to say whatever in my mind and let it go more often. It seems to lessen the frustration.

Tuff

Dear NJ56Mom

I can really identify with what you are saying here. I had a wonderful RA nurse when I was first diagnosed many years ago now, and she told me that having RA is like having a new baby - it changes your life and just as when you have a baby you have to put it first, it's the same with RA, your life revolves round that and conditions vary from day to day, but whatever the day is you have to consider if you can cope with it.

I hate, just HATE having to say I'm not fit to go somewhere or do something. I know it's wrong, but I see it as an admission of failure, which is stupid, because i never asked for all the problems I've got - I never asked for one of them. My own brother is by far the worst, I am sure he thinks I'm putting it all on and I can sense the attitude 'Well, you could if you tried!'What does he think I do?

I am a coward often and get my husband to ring people to say we can't come - or I did this until very, very recently and suddenly, years down the line now, I can say 'I'm sorry, I've got a bad flare up and we can't come' and I can say it without thinking what a coward I am. If my frinds don't want to understand then they weren't friends in the first place!

I'm not pretending this is always so, because even with my bestest friend I sometimes feel she is getting frustrated with me. But I am so blessed - so very blessed - because I have the most understanding and caring husband under the sun. We married late and I became a wife, a mother, and a grandmother all on the same day.I have had so much illness since I married him, and not once, no, not once has he ever complained nor failed to tell me he loves me every single day. I wish I could share him with you but it's just too far from UK to US!!

take care, Mommy, love and hugs to you Arthur 

Oh, Tony, you're so right - you're ONLY fifty - gosh how wonderfully young - some of the best times lie ahead of you. In fact, you're nearly as young as me (69 going on 70) but not quite! I, too, hated my wheelchair and felt really embarassed to use it, after all, I'm NOT disabled! I  just have a few falling-over problems! Because I don't always have to use my wheelybin (I can walk short distances on good days as long as my hubby props me up) I used to think, gosh, they'll all be looking at me and judging me 'What is SHE doing in a wheelchair?' I could hear them thinking. It meant that every time I went out i didn't enjoy it - now, however, when I've grown younger, I realise life is too short to bother about what THEY think - who are THEY anyway to judge me? Only my God can do that. So now my dear hubby proudly pushes me round in my royal wheelybin with his own dear pile of rubbish in it. (I used to have an electric one but visual problems meant that there were an awful lot of people lying around on the pavement (sidewalk) moaning.

Enjoy your life, Tony, and *** what other folk think, after all, this is the REAL thing - you don't get chance to do it again.

Stay young, be happy,

Mrs Arthur Itis

What a coincidence, Yellowfin! I am 51 and have a lot of 'pride' (?) and am keen to keep up my appearence for my self esteem as much as anything, however, the last trip round our smaller supermarket nearly killed me, I didn't know how to get back in my car and sat hunched over the wheel and suddenly saw a woman about my age I guess, and well groomed and attractive, on a little electric scooter with a basket. She looked confident, at ease and well (apart from being on a scooter). I caught my reflection in the rear view mirror and my face was washed out, eyes red from weeping in pain and looking utterly exhausted but, hey, smart clothes on!! Duuuuh I thought to myself 'just who is the smart one here??' Now I go round the larger supermarkets (more choice) on their own wheelie trolleys, relaxed, made-up, smiling and on my third week going like that, received a date offer from a well-fit guy and we had a great time. My advice to anyone not happy on taking that plunge is to go for it! It's attitude that counts, and if you go round smiling and let's face it, much more comfortably, some of those looks you get may not all be thinking as you said 'Who's that cripple' at all....... ;-)

07/24/09

As much as anyone would want others to understand, most never understand what one goes through with any type of chronic pain or chronic illness, it is not some thing I ever beat myself up about. A true friend will understand if one is not feeling up to par on any given day or week. If they do not understand, then the friend ship is not one of major substance to begin with.

To get upset over it is a huge waste of energy. One has to focus on one's own life 1st so we can function the best possible through each day, one minute at a time. We have good days, to us they are good, to other days we just wish would come and go in major real time.  I live with chronic pain and 9 chronic illnesses. I make the best of each day, just one minute at a time. To do more would be asking more than my body and mind can provide.

I stay away from any stressful situation I know will cause more than I will allow in my comfort zone. When one has to be pushed into a social setting away from one's comfort zone, we do not have this to fall back on. I wish it was a perfect world but that is wishing on a star in another journey yet to be discovered.

I like this HellingWell Forum as I have read and have posted some as a new member.  No one has the exact same illness even if same diagnosis. We all share a common bond and that is a great comfort. I am blessed to have those few in my life that understand. When I have to go out in a social setting I put on my mask and just say, "it's show time". Do the best I can when it just has to be done to get away from home. There is nothing more comforting and stress free than being at home 24/7. Being I am bed bound 99% of my life and have an electric wheel chair to get around and to medical and grocery or vehicle maintanence or get the mail every week or 10 days, I find the best coping skills to maintain at home.

I have no regrets of not being able to do the social things of going to a pool or to eat out or attend functions. I did that a lot in my life before I became permanently disabled for life. I am blessed I got to do all my dreams in my professions I was in. What happened to me was in less than one minute and my life was changed for ever. So through time you learn how to cope and make the best of any situation. I learned to 'Negate Life' is the worst thing one can do. Find what makes one feel the best in a comfort zone and when one is feeling up to going out side of the comfort zone. No two days are alike nor are two minutes alike. If others do not understand you have to realize no one understands unless they are going through the same disablity. You can tell someone you have a cold and they will say, "will in two weeks or 14 days you will be feeling better". You tell someone you have cancer and they react as though they might get it. They do not know how to deal with it. Just like any Chronic Illness is so over the top for anyone that does not have a Chronic Illness. I make no apology to anyone.