do you ever wonder what is going on with our bodies, that one day we feel like the meds are finally working. Than bam the next day your back to square one? i have felt like crap,achey,pain FATIUGE for 1 week. than today,wow, i feel like my old self. could it be I had my 4th mtx. injection yesterday? The weather? what i ate? Or because i took my prednisone today? I wanna believe that the mtx. is getting into my system. I am just tired of all this. Up and down crap. My family says, "you need to get moving" sh*t i am a nurse i move all day long. This isnt just something you can say "mind over matter" I just dont want to forget who my old self is. I dont like my new self. obsessed with this disease. it is still very new to me. will i ever get back to my old way of thinking and doing? or do i need to accept this is going to be my life. Meds,sickness,depression. I have a pharmacy in my purse for god sake! i cant leave home with out my lifesaving meds. I count the hours until i can take my next pred. or tramadol. I count the days until my mtx. shot. And pray that the next shot i will feel better,or that it will finlly kick in. I cant even think of the future with a posative outlook. Now its one day at a time, hope i can make it to work the next day. IF I HAVE A GOOD DAY, WHAT WILL I CHOSE TO DO WITH IT? CLEAN,PAY BILLS,GROCERY SHOP,LAUNDRY? BECASUE I AM GETTING TO THE POINT THAT I CAN ONLY DO THESE THINGS ON A GOOD DAY. sorry for the negative post ,just need to vent. and sick of venting to people that think its mind over matter!
kel
Sorry to read that you have people who feel your problem is "mind over matter". I experienced that from my husband who didn't understand depression -- at first my reaction was anger, but then I told him that instead of feeling anger toward him I was just going to feel thankful that he didn't understand how I felt because that meant he wasn't suffering from depression. Just taking that attitude made me feel better. Sadly, however, he now has depression year-round (mine is only seasonal). He has told me several times how he now realizes that depression isn't "mind over matter". Try to be thankful that the people who don't understand you are very fortunate to not have RA - - and if that isn't helpful to you, pick other friends who are more kind towards you. I guess you will just have to try to ignore "family" members who just don't get it.kel - you just ranted and vented for me. Thanks!! LOL I've had the *exact* same thoughts. It is very frustrating at times. Very. VERY.
As far as picking what mundane task you're going to do on the ONE day that you actually feel good......I know.......it SUCKS. I'm a glutton for instant satisfaction, and spending my one good day cleaning is NOT my idea of fun. I tend to do one unfun thing, and then one fun thing. And I do the most IMPORTANT unfun thing first. If I don't make it through all of them....oh well! There are more important things in life than having a clean bathroom sink. Ya know?
I don't wanna burst your bubble, but no one can ever be their old self. As the years go on we ALL grow, and adapt, and change. RA is with you now for life, and it WILL change you. It doesn't mean it's all BAD, just different. The longer you cling to the "old you" the harder it will be for you to one day accept that this is who you are now. But having RA doesn't mean you can't still do the things you love. You are new to the drugs, and they're new to you. It takes a lot of waiting and patience for them to start working. You WILL make it there. And we will all be here with you along the way!
*hugs*
Katie, you just made my day a little brighter. Its tough to hear the truth, but i think i need to get over this deniel sh*t! I dont know how too, maybe time will. I maybe am putting too much comfort in these meds thinking they are going to cure me. My sister has been in remission for 5 years, my brother on the other hand is in very bad shape. so i could go either way. Anyway, thanks katie for making me smile today. Your a gem!
kel
Glad I could brighten your day! You will get through the denial part. It's a process, don't push yourself, just try to stay realistic. :) It's just like going through the grieving process - it takes some time.
I was in remission for almost 7 years - it can happen!!!!!!!! Just keep on top of things and don't let it get you down - at least, not for very long. We all get down, even the strongest, most experienced RAer gets hit by the speeding train of CRAP that this disease can carry.
Never hesitate to tell us what you're feeling, or ask a question!! :)
Kel, I appreciated your post. You were saying what I've been saying to myself. This blows. Denial only works for a while. The part that really got to me "mind over matter". There are more than a few friends that have told me if i could just get a positive attitude (like I used to have) the disease would go away. And I also listen to "you must have had a bad diet with a lot of additives to get this disease".
So i guess the bottom line....at least in some people's minds...I CAUSED THIS.
That in itself, pisses me off. Whooooa, now I'm negative
So I say, VENT AWAY!!! :)
this morning,when i was having a "good day" i was with my family, joking,laughing, being a pain in the ass. throwing a ball at my brothers head.. Im the baby of 6 kids. and 40 years old, and still a pain in there butts. but nayway, when i got home i realized that i havent acted that way in months. I had forgotten that that was me. i had forgotten that because i have been in the depths of HELL (pain,fatiuge) By the way thats what we should call our symptoms. All obsessed and consumed by pills,pain,fatiuge. I just dont want to lose that person i was. Its hard to be a pain in the ass to your family when you dont feel good
kel
I hear ya on being sick for those months has aged you in more ways than one. I can completely understand that after what I went thru this past fall and winter.
We all go thru denial and wanting to hang on to our other selves that we were before the RA. I have had ups and downs with this for just about 13 years and still face denial once in awhile. I still get sick and tired of meds, doc appts., side effects from meds, etc. It is good once in a while to vent and get all the negative out so that you can move on. Without a place like this it would be much harder. I have retained some of my other self. My snese of humor rarely goes away and I will be a sarcastic smart (censored) til the day I die lol. I have retained some of my stubborn redheaded ways also. We don't have to give up all of our other self...just some of the physical part of it. With my new self I have gained a better understanding of this disease and other diseases also, how to talk better to docs to get across what I need and feel, a much closer relationship with my husband and kids, and several other things. This did not happen overnight tho. It was a struggle and I went kicking and screaming the whole darn way.
You don't need to explain yourself at all. You have RA and that is that and people can accept that or go be like a lemming as far as I'm concerned. But I didn't get to that thinking overnight either. I do use the spoon theory at times to explain this to people and it does help. http://www.butyoudontlooksick.com/the_spoon_theory/
Thats funny, i just told my mom this morning about the spoon theory! i have aslo had my boyfriend read it before. It is me to a tee
kel
Dear kel, welcome to the club!! We all get sick of this stuff, what it does to us what it is, but we aren't babies!! We can live 'with' this disease, FIGHT back against it. My friend had breast cancer and everyone was amazed at her strenght. She fought everyday to maintain her dignity, to hold her head up high, to do what she needed to do medically (and we can only guess what that is), she got through it and you know you wouldn't know she had been sick, Our's goes on and on but we can be very brave. Working at this is jsut part of our 'new lives' , different and not something we would select to happen, but what can we do. I know just how you feel and I know you will fold this all into you life and be who you are!! No one can take that away!!
sarah jane