Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
My family is great but they don't know how much I hide from them they don't know how bad I hurt all the time ur how I'm so exhausted I feel like I could fall asleep standing up but I can never sleep when it's time to. They don't know that I'm constantly bathleing stomach issues from nausea to diariah and gas pains all due yo meds. I mean they know about this stuff but they don't know how constant it is or how tough I have to be to pull myself through another day with a smile on my face so I get a little grouchy when my seems start to rip and all the patched holes of my life start to fray and some one days what's wrong with you ! Geez you need to go to bed earlier tonight.
I too have had all the comments as people have said here, from patronizing tones, to being told I'm imagining it, to being told that people attract illness when they're "energy" is all wrong. That one is thought by many as more people buy into the whole we 'make our selves sick stuff. ie Louise Hayes "you can heal your life" author who even goes as far as to attribute each illness to actual issues eg being sad gives you diabetes etc. Though there is always a mind, body, emotional connection, it is often an overly simplistic view of illness by people who know little. It irritates me because i guess that means that sick babies and animals with illness must have unresolved emotional issues.
So, the avoidance or the 'know all' attitudes continue...It makes it harder to deal with. I'm trying not to have any expectations of people so I don't feel let down.
So odd i was just telling my mom the same thing .and that it adds to the exhaustion of explaining over and over again to people who you shouldnt have to ..they know you feel bad and that you have this disease ...Good for you for smiling ...some times i don't even do that because im thinking this hurts to much to smile ..so you are stronger then you think and plus you can feel any way you want to , its your body ..its happening to you ....i understand about feeling like you can sleep standing up ...that's hard to not want to lay down to sleep ...but then once you lay down ..not sure if you do this or not..the mind wonders or it hurts to lie down..
do you take little cat naps just to rejuvenate a little ..just pretend you are in Europe where they do rightfully so take afternoon naps ..Americans feel a little like its a sin to lay down for a quick rest ..not true :)
Have a better afternoon..
Tami