Is is just me?

OMG, we should talk!  I am living with just this!  I work 40+ hours a week outside the home, then come home and take care of everything else as if I were a homemaker.  We have a 4000 SqFt home with 4 bathrooms and I primarliy do 99% of the work.  Hubby helps a very little, son helps a little.  I do it all, Grocery shopping, cooking, cleaning, scrubbing toilets, showers etc.  I'm exhausted, drained, irritated, annoyed and frustrated.  After working a 10 hour day, my hubby will ask whats for dinner?  He does not work.  Been retired for 9 years and is home most of the time.  He's in process of completing his BA, so his excuse is that he's busy studying. 

So, I do, do, do know what you mean.  The meds do not remove all the pain.  Sometimes I think it's worse.

I wish I had advice for you, but what others on this site have told me is refer your family to this site.  Let them read the posts.

Good Luck!

I referred my family here to read posts! It opens there eyes that you are not just whining! It is a hard thing to get across to people!

Brad

I feel the same way.  That is why it took me over a year to finally go to the dr and see if I had something wrong with me. 

Now, I think my family understands, but my hubby still gives me funny looks sometimes, like I am faking it.  His family too.  I think his grandmother finally realized on Easter what bad shape I am in because I tried to sit on the floor to change my daughter and she watched me struggle through the process.  THen  she watched me take 10 minutes to stand up...and crawl up the stairs to dinner.

Maybe she will pass the word along.

OMG Dya know what, it would be funny if it wasn`t so true.. You are definitley not on your own with this one matey  I also have never been pain free for 7 months now (still working out my meds) but just because I don`t look no different everyone seems to think that the bloody disease aint there no more!! How wrong can they be?? My partner seems to be the most understanding though, thats to a point as well.  He sometimes wonders why I can`t reach the roast potatoes out of the bottom oven without crying out in pain with my hands and wrists gggrrrr!!  The things I used to do before RA are now nearly non existance.  I can just about walk to the toilet and thats in pain with every bloody step.  OMG how I HATE this disease and how it has crippled me.  Don`t get me wrong I am not always like this, but thank god for this site where there are others who really do understand, and don`t start yawning when you tell them that your whole body is aching.  Even my Mum looks at me as though I am exaggerating the pain, but for gods sake why the hell would I do that?? when the pain is bad enough.  So ...... the answer to your Question is...... No it`s not just you!!

 Good Luck and keep ya chin up xx Angie

I have had RA for about the same time and have not had a pain free day either. I also do not express my feelings to my family. I hold it all in and deal with it myself. My wife knows when i am in extreme pain and she also knows my ability to do what I used to is dissapearing rapidly. It is hard to accept that I cant go out and work in the yard or climb on top of the house and fix a roof leak like i used to. I keep hearing that when they get the medicine right I will feel better but like you i have not seen that day. May we both find a few pain free days in our furture.

Jeff

I was diagnosed 6 months ago and think that getting my family to understand and be compassionate to the pain and limitations RA imposes has proven to be the most emotional aspect of the disease.

We expect the people who love us, especially our spouses, to be kind and helpful.  It seems so simple because it is what we would do for them, right?  I think in my case my husband doesn't want our life to change, so often pretends that I can do what I always have despite the fact he helps me lift and open things for dinner every day.  There is a ton of frustration that accompanies RA and it seems easiest to turn those feelings on to my spouse.  Why on earth would he not fold the laundry or pick up after himself while I'm struggling just to keep working?  Beccause if he changes all  that he will be acknowledging that RA has changed our life and our hopes.  This is a slow process and over time by asking for help we are making small changes.  It iss tough to keep communicating when the reactions arre so often frustrating, but keep at it.  People's reluctance to accept that RA has made our lives different does not change the reality that we live with every day.  WE can not live in denial quite so easily.

I am in the same boat.  No compassion, no understanding. 

Hello!  I too am fairly new at this RA stuff, but agree with what you are finding with family and friends... I think I have figured out that they are going thru their own denial process... I was always the "strong" one, and even my husband is having a hard time with my not being like I was before RA... we were very active sports-wise, and he is still full of energy, but I have slowed down considerably with this dis-ease... I am trying my darndest to keep up with my exercise, and just recently got a treadmill!  I think that will help a lot, as I can take it up gradually and hopefully, will get strong again... I know I won't be like I was before, but I was "above average" before, way so, so I am just hoping now to be "average"... anyway, hope this helps... you're not alone...

Miki

Hello, IT IS NOT JUST YOU AND NOT AND I MEAN NOT IN YOUR HEAD !!! I UNDERSTAND THE PAIN AND STIFFNESS AND SWELLING........I am only 43 and have always been very active....until RA. WOW ! talk about getting knocked off your feet and to have the pain, swelling, and fatigue to go along with it too. I truly understand and I don't think anyone can unless they suffer from RA. Furthermore, unless your hair falls out or you have sores all over your body or turn colors, no one thinks you are hurting or really sick..........if only they could see our insides and our pain... thank you for posting your blog.

Someone mentioned denial.... that is what I am going thru.  JW still can't find the right mix of meds.  Whenever he starts something new -- I think as positive as I can and feel that "THIS IS IT.  LIFE WILL BE DIFFERENT.  HE/WE CAN GET OUR LIFE BACK."  But this disease is cruel.  I try to be understanding.  I have my good days and my bad days.  When my husband said his body was rejecting a treatment that we had such hope for, I thought he was just being negative and that he had to think more positively.  Then he woke up with a rash all over his body, fever, throwing up, etc.  I know know what a jerk I've been and that I have to have enough faith in my husband and respect him enough to know that when he says he's in pain and needs to rest -- I believe him now.  I'm sorry it has taken me so long.  ps... JW is getting ready to turn 45 and has had this disease for 12 years now.

Hi Go_rilla -

The first year is  learning - but you are past one and and I'm wondering if you've let your doctor know that you are still having a very rough time.  These days, most docs want to treat RA aggressively, and that may mean going to the big guns a lot sooner.  That could mean Remicade or Enbrel, or Humira for instance. Unless there is something in your medical history that would prevent your using them, you may want to do a little research and see what sounds right to you.

     I didn't agree with what my doctor first came up with (he actually was more aggressive than I was prepared for at first, but later appreciated it).  I went off the meds for a few months (which I could do then, but not now) and then after I knew what I thought would work for me and fit best in my life, I went back to him and told him.  It took us a while to get on the same wavelength, but since there aren't too many rheumatologists within 100 miles of me (2 that I know of), I made the decision to stick with him and work it out, rather than have to go back to square 1.  That may not be the right option for everyone.  For some, it might be an option to get a second opinion somewhere.  But if you're really not feeling better, then something should probably be changed or tried, or adjusted.  Hope  you can find how to feel better!  (and that your family will come to understand ... I heard of one woman with RA who couldn't do much more than moan in a chair.  Her hubby thought she was lazy & malingering - well,when she got on good meds for me, she was up and around in a flash, and he realized, she wasn't faking, she'd been in terrible shape.  Everyone's story won't be that dramatic but there is a lesson in it for some spectators!