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Joined: May 2014
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RBarnes Offline OP
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Hi all,

One of the most frustrating aspects of this disease - for me, at least - is getting others to understand how it works and the physical, emotional and psychological wars we fight each day. I've explained to them that I have AS and I've explained how the disease affects me, yet it's still difficult for them to understand that it hurts WORSE when I sit still (I have a desk job), lie down or stand in one place for any length of time. They see me walking around - OK, usually waddling, but it's close to walking - riding a bike, or even jogging to catch a frisbee and they're like, "You like fine to me! Are you feeling better?" Even if they don't say anything, I swear I can see the judgement in their eyes.

*Sigh*

I am making a conscious effort to move my body as much as I can as often as I can. If it weren't for my ability to temporarily lessen the pain with activity, I'm not sure how I'd cope.

Thanks for listening.

Last edited by RBarnes; 05/30/14 03:17 PM.

Dx 2013 RF- HLA-B27+
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Very_Addicted_to_AS_Kickin
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The spoon theory can help some understand, so its worth sharing:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

But my feeling is that most will never understand.

I firmly believe that those who do understand either deal with chronic illness / chronic pain themselves, or have a loved one who did or does (a spouse, a parent, a sibling)…so they've lived with it or with someone with it.

There are a few blessed souls who seem to have the capacity to be empathetic without those above experiences, but those people seem in my experience to be few and far between.

When I find someone at work who is understanding, they often have a spouse who battles chronic illness.

I've heard through the grapevine that some (who are only my acquaintances) have used the word "hypochondriac".

The best thing we can do is rather than try to convince others, instead try to not care what others think of us….if I find some good quotes along these lines, I will pass them on….I've seen them and they do help me.

But yes, it seems easy for others to understand someone who cannot walk but someone who cannot sit. For sure we must be making that up! smile

Currently I'm in the process of going through the process of getting excused from jury duty. One of the questions asked was how is it that I can work but not do jury duty. I told them I can sit when I need to, stand when I need to, even lay when I need to (I have my own office and a backpacking pad to lay on), walk around when I need to. When I sit, its usually with ice packs or a heating pad. When I stand, its always on a cushioned mat. Its the flexibility to do what I need to do when I need to do it that makes my job possible. And if I'm flaring badly, I can take off….thankfully I seem to be worse during breaks….maybe moving around less?



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Oct 2008
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Fifth_Degree_AS_Kicker
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Hey can someone delete that post? lol I was upset frown

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Second_Degree_AS_Kicker
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Yep, I know what you mean! I don't know if this is a good way of dealing with it or not, but I just don't open up to many people about my "struggles". Nine times out of ten, the person I'm telling will respond with something that makes me feel worse, or it will just be awkward. Therefore, I'd rather talk about other stuff and hide it, except from a select few who "get it", and who know that just by listening and not judging they help. People don't bring it up with me ever because they know I don't like to talk about it (I give short one word answers if they ask questions) or maybe they just forgot about it because other than eating a weird diet and carrying around a seat cushion I seem "normal". I also don't want anyone's sympathy or pity so I don't like to tell them about how hard it can be at times. Or worse, I'm sure some will think I'm faking it all if I go into details, so there's another reason why I keep quiet.

As long as I've got a couple people I can be open with, I'm ok.

So...yeah I totally know how you feel, but I think there's no good solution.....


Everything is okay. Trust yourself, and do not live from a place of fear.
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Third_Degree_AS_Kicker
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I think it's a bit presumptive of those of us with a chronic disease, health problem to assume that all those around us need to "understand". The close people in your life-yes. but coworkers-bite me. I have limited energy and I just don't think that all those around me are worth expending it.

What irritates me more is the "teasing" that makes fun of things I have to do in order to spend time with people. Family is the worse! If I'm with others and standing, I have to rock back and forth on my feet because they hurt so bad and also my hips need the constant movement. I am not a fussy pants, I am suffering in order to spend time with people.
The invites to family dos that are hours or even a plane ride away when they know I cannot make it that far sitting. Then they feel "slighted" when I cannot go. AARGH!


Be kind, for everyone you meet is fighting a hard battle.
Plato
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I do not believe anyone really understands. I do not half the time. I do not even like telling someone I have a form of arthritis that causes a good bit of fatigue. I have discovered everyone has arthritis? You know, in my knee or my fingers or someplace. Then they think I am just a nut for saying my SI joints and sacrum hurts. I feel like a weiny for complaining. I have had this stuff for 40 years and it gets tougher all the time. Have about reached my end point. Am pretty depressed as I see no hope for my retirement. Sorry for the Debbie Downer here, just wanted to say unless you have crazy AS you cannot understand the problems associated with this fairly unknown problem. AS seems to be treated like the red headed step child of RA. Good luck guys.

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RBarnes Offline OP
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Sorry if something about my post upset you, Tnate. Was just venting some frustration.

Take care.


Dx 2013 RF- HLA-B27+
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Very_Addicted_to_AS_Kickin
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Hi,

I don't think Tnate was talking about your post. I have a feeling he posted something hinmself and then regretted hasty words.

I like the Spoon Theory, too, by the way. It says it beautifully.

Warm Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

Joined: Sep 2001
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Major_AS_Kicker
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I have decided most people don't really care when they ask how you are doing. I always tell them I am doing fine. It is better for me not to think about the negative side of my AS/MS anyway.


Steve Orchard, Running from AS & MS
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Addicted_to_AS_Kickin
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I kind of figured out (after many years) that it really doesn't matter whether anyone understands or not. It doesn't change any thing one way or the other. I get aggravated at one member of my family who either doesn't include me because "you never feel like doing anything anyway" OR asking me to some Huge thing that she knows I can't do. Just kind of puts me in a spot. She understands just likes to make me uncomfortable.

Your are right Steve. "How are you doing?" is just a greeting for most people. The ones who really want to know will pursue it further after the "I am fine.".

May blessings abound today.




Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

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