I have had many many many well meaning people give me advice on what to do and how to help relieve the pain and stiffness that comes with this horrid disease. Often the ones offering the advice simply do not understand that this disease is not arthritis and reacts differently for every single one of us. Some lucky ones with this disease are fully capable of running and walking and exercising (so jealous) and even a few of those smug A-holes have offered their well meaning well maybe you should try this and just "push" through the pain.
My response is to typically smile and agree to try whatever dumb thing they popped off with, because to stand there and explain the effects that MY disease has on MY body would simply take to long. I know any advice that is offered comes from a place of sympathy and an attempt to understand where I'm coming from and an attempt to offer a solution which a lot of people are almost compelled to try to "fix" me. I simply don't have the patience to explain to them all the things that I have tried and am currently trying to learn to live in this body. I don't see the point in being rude and or hurting their feelings when the world is already full enough of idiots who have no control over their nastiness or ignorance. I prefer to look at them and smile and pretend to listen so that they feel they might actually be helping. After all if someone I loved was going through something and I offered my opinion on what I thought might help I imagine what it would feel like to have my well intentioned words thrown back into my face. I would be hurt because for someone to take the time to think and or look up whatever illness or problem and spend enough time to actually come up with something to tell you thats not coming from a bad place.
just had an interesting conversation actually with a friend of mine. . . . ME:"I'm gonna need to lose some thunder thighs after this baby gets here" Friend: go to the gym I'll pay you burn your extra chins off" nice laugh pause and me: well that would be awesome of you but no sense in a gym membership as all I can do is cycle or swim" friend: awww come on you can get on a treadmill your bones fuse together from lack of use right? so if you use them then that'll make it better right?" Me: no, I don't have to do any thing and my bones will fuse however if I stress my joints they tend to pop out of place and cause nerve damage" Friend: that doesnt make any sense your just making excuses to not run your extra ass off". .. .. my feelings are getting hurt at this point and I'm getting frustrated as this is a pretty close friend. . me" no seriously I can't run dude, not from lack of wanting to trust me it used to be my favorites thing to do when I am stressed out" Friend: awww come on can't hurt to try". . . . at this point before I can even say any thing my dear husband jumps in and you can tel from his tone of voice he has been listening and feels the same way I do Hubby"back off man she really can't run her body can't take it and her hips will come out of place and it hurts her to the point she cant get off the couch I'll have to carry her around leave her alone!" Friend shut right up and flushed a little, I sorta felt sorry for him but super puffed with pride that my husband understands even if no one else does.
It may not come from a bad place but others need to learn to listen instead of judging and condemning what they do not understand. Sometimes compassion needs to be taught even though we are all adults we forget that behind every action that we believe to be silly and or stupid there can and probably is a really logical explanation.
My own personal feelings on this is that I've tried every diet, attempted exercise, I still keep an open mind and an open ear, just as I would like to change someone's life by offering what I have learned that works for my body,
