oh martini, geez louise, i'm sorry you had to endure that after all the pre-planning and pushing to be there to see your niece and family.
sometimes i want to wear a sandwich board (ha ha if i could only carry it) with info and warnings.
i really know how frustrating having to deal with all that is. please, try not to waste another thought on them. sometimes i just want to punch people, esp ones who know of my struggles.
while we were in FL my mother walked in on me after getting out of the shower and pointing out a few flaws she poked (to me) she said lightly touched my RSD area and i screamed like a cat under a rocking chair. "oh, that still hurts?" duhhhh.
maybe we're too good at looking good and should dress as zombies next outing!

hugs guy

Martin we all have and still go through this! I finally reached the point years ago to quit focusing so much on their acceptance as much as mine own acceptance that they didn't have or need to accept my conditions or any of my other problems in my life. It is my life to live not theirs. By doing this it felt like a 100 lb bag of shit had been lifted off of me :)

Have crane willing to help lift that bag!

Hi all,

Thanks Seren, it is so frustrating. I like the board idea. Iam going to print a sheet and wear it in my forehead. i have even sent them brochures on my condition and not even that helped.
Toni- Where is the crane? Come get me. I am not really looking for their acceptance as more as understanding of my condition. I have sort of given up but when you see them in person well you gotta kind of explain certain things. It came up becasue I asked gtheir opinion of the wedding trip. Big mistake!
I finally said to my brother in law would he ask his wife to travel to a wedding and risk her job and a stroke?
Crickets!
Still frustrated!

Martini

Martini-I am so pissed for you that your family does not understand. It is unbelievable they are not listening to what you are sharing with them. It is unusual for me to be at a loss for words but I am truly speechless that you lack understanding, compassion and acceptance for your medical conditions from those that should be the most supportive.

And for them to suggest you quit support groups??? Do those that have survived the horrors of war leave their support groups? What is AA for? What about those of us that have lost children? Do we leave Compassionate Friends?.........again....ludicrous.

Wishing you could wake up with a new understanding from your family........

Hugs and Understanding,
Joanne

(( HUGS)) I undestand and i am sure everyone feels the same way. i dont mention it anymore, no reason to, even my husband doesnt get it. OMG. he has a little shoulder pain since he has gotten older and has therapy for it and pills, he thinks its the end of the world and he cant do a thing. i just told him thats how my entire body has felt for over 20 years but he just looks at me.

i just dont think they appreciate how hard we work to do things for them and our family, how we try hard to be normal and then we get in worse shape.

Somedays we just have to rant or blow up. i am glad you are here and can rant, we understand.

If i hear again, we all have health problems or they have a pill for that, i will scream. I am going to say next time no they dont have a pill for chronic pain that i can take,. they dont have a pill for fibro i can take and if i even take an NSAID it causes floaters and i am already blind in one eye because of them.

i dont care if they accept me or not but understand how hard i do things and how hard we all try to be normal. How depressing it is when your own husband just wants to sit around the house, watch old TV and grumble grumble grumble.

I read the Japanese came out with RHS - retired husband syndrome - and were they ever right.

i see why older women have friends they do things with, got tired of their husbands not wanting to do anything except what they want to do.

even though we all are in pain we need to get out do something, try to enjoy life as much as we can.

for your family, do like me, just learn to ignore and say the hell with them and be glad we have a group that understands.

magic, got a real LOL out of this line..."I read the Japanese came out with RHS - retired husband syndrome - and were they ever right".

i'm done with dealing with the crazy info and other comments. i'm fighting enough battles, including just taking care of myself and penny, so take a number and keep your mouth closed. i think that's why this group is such a relief for us...the absolute understanding even if it isn't your kind of pain, we understand CP isn't a little bruise and affects all aspects of our lives.

Martini, I'm so sorry that your family is still clueless and just plain flat out don't get it. I endured the same thing for many years until I sent them a "Letter to Normal's" and "The spoon theory" I'd atatch a link but am unable to do so with my phone. Just google the titles & they'll come up. With the spoon theory atatch a note and tell them wherever they see the word Lupus to insert "brain injury or chronic pain". If you've already done this, do it again. If they don't get it this time around forget about it as hard as it is.

Like Toni already said, once we quit worrying about what others think and quit wishing for their acceptance the more weight is taken off our shoulders. Does that make it right? Absolutely not, but it sure beats carrying their negativity, ignorance (for lack of a better word) & no understanding feelings around with you. Your better than that. As far as the wedding goes, Darlin only you know if you can do the trip & from what you've said in the past its pretty much out of the question. So pick up a nice card, put a few bucks in it and call it a day.

Love & Hugs
Lisa

Martini.
Not a goddamned thing I can add.
I'm so sorry you don't get what you need from your family.
This I learned early in the pain " game" ( and it applies to brain injury, as well.. I'm finding out from my daughter's stroke..)
Don't look for what you need where you're not going to get it.

Come to us. We " get" it.
Luvsnhugs
jc

Right on Ton & jc.

Martin, at the end of the day, it doesn't matter who accepts my cp. It only matters that I accept it. Are you in acceptance of your condition. I know I wasn't in the beginning or all the time in between. Hell, still today I get pissed that I can't do this or that. Being mostly on the other side of the process to get there, I implore you to stop talking about it to your family. They will never "get it". Most don't.

You went to a lot of trouble and pain to get there. I bet you didn't get any atta boys for that so you'll just have to do with us old broads saying it to you. Atta boy for going to the trouble to go when you could have stayed home and slept.

Gr8 and others summed it well.

i am so sorry for their ignorance Martin...we love and understand you. you have nothing to prove to us. come as you are. you are such an important part of the Circle. im glad you are here.

With family I found it's one heck of a (at times, brutal) learning curve.
It's nice to have support and understanding, but getting to that "spot" takes enormous patience and tolerance as we attempt to "educate" those ignorant around us. Yet it IS totally normal human behaviour to be ignorant (not quite the proper word I'm looking for) of issues that don't directly affect us, until we form some emotional "attachment" to the said issues.

You could also twist and distort this into a sexist gender issue lol Us males are suppose to be tough and resilient, to overcome ANYTHING!!!!! Obviously we're failing as a man since we either aren't trying the right things or we are simply too weak and not pushing ourselves hard enough. When my family suggests things, they may not be saying this, but this is what my male, egotistical mind is hearing. Then we often play this out in our own minds, questioning our own very existence as to "what the hell has become of THIS man, me"?!! Thats when it get's brutal, when we turn on ourselves. Self Acceptance is the key here.

I'm like Toni too. I had to realize that I basically "served" my family and those I was involved with for decades, I was 99% of the time, there for them. Now I had to learn to be there for me, that was extremely devastating. I had to except the fact, even though I still can stand strong and defiant, I sooo truly wish not to any more, yet Even I still consider this a grave weakness that I cannot/won't accept in myself. Damn egos eh?! lol

My wife at times is a very demanding powerful (on many levels) woman that won't ever accept no as a answer. So a few years back, pain brutally due jumping for her every whim, I simply went on strike and did Only what I needed to and which I was "willing" to do for close to a month. Even though she went on a long and very lengthy "campaign" of attempting to whip my ass back into shape with her razor tongue, I remained defiant and actually was able to deal better with my pain. I now only jump through my own hoops and only jump through hers or the rest of the families, when I'm able, ready, willing and at my pace. Now, if one would consider their family as "employees", I certainly have my share of "disgruntled workers" lol. Tough I say, since I'm the one that has to deal with me in the middle of those endless nights....

What makes this group very unique are the many CP "veterans" here, we get, we lived it and we often cringe reading threads like this since we know how brutal it is. I'm even pretty confident many here could almost "predict" how someone may be in 5yrs, in 10 yrs etc, since we understand the person on many different levels. We can see others weaknesses and strengths, since we understand our own, thus we can help each other grow in whatever areas in our lives that need the gentle nurturing that only another can bring....

Considering what you are dealing with, to me, you're doing very well!!