Tired Of Explaining The Same Things
 

OK....so I've seen a few rants here today so I'm going to add mine.

How many freakin' times do we have to explain to our family/friends that the heat affects us negatively. We're not trying to get out of doing things.

I am so tired of hearing "Oh, come on and go shopping with me. The Mall is air conditioned." Yeah, I think, and about a million miles of walking will just do me so much good. Not to mention the 150 degree car I'll be getting back into.

And this one....."well, your medication must not be working if you can't tolerate the heat. Napping for 4-5 hours a day isn't normal....maybe you need to try another medication." This one was from my sister.....:mad:

I'm so tired of explaining to others why I am the way I am. I've just gotten to the point of not even trying to justify my reasons. Sometimes I don't even reply to their comments. My sister thinks I'm exaggerating things sometimes - at least that's the impression I get.

:Dunno: Sometimes I just feel like if I have to explain myself to one more person I just might explode!! :thud:

Honestly, Kelly, it's like anything else, you just get so it rolls off your back. When people ask me how I am, I usually say, "Eh, you know. Nothing special to report here." When they suggest/imply that I'm milking it, I just tell them that they're right and that I suck. If I get the line about medicine not working, I say, "You're right, why don't you fix it?"

Basically, I no longer allow any wiggle room. I simply don't care what they think anymore. I don't say "I can't", I say "No." and if it's not good enough, I let them dangle in their own awkward silence. It works, believe me! :)

Ya know, I would just write down your limitations and how honoring them keeps you healthier and happier. Then I would describe how stressful it is for others to try to coax you to do what you know is unhealthy, and that stress can only add to your declining health.

Then provide the url for the national MS society so that if they really care about you and how to help you, they can take the time to learn about your disease.

Print it out, in multiple copies so you can hand it to people or keep it on word and e-mail it to those who need it.

I might imagine you are trying to put your best foot forward and look your best despite your illness. Its just no fun to have to explain this disease to people, multiple times.

Just my two cents Kelly :D I think you should get all righteous on your sister and say 'haven't you read anything about MS!!, you're my sister for crying out loud!!'. That should do the trick. Guilt. It works on my kids...sometimes :).

Guess which one I heard the other day? My own mother telling me that Tanya, who lives in her apartment complex, who also happens to have ms, handles the heat just fine. She wonders why Tanya can lay out and doesn't seem affected by the heat like Jim and how Tanya says she has never been affected by the heat, blah blah blah.

I told my mom that everyone is different and to ask Tanya what she has just to be sure my mom has it right. lol

But still it is frustrating at times. You almost "feel" guilty trying to explain you know? I was telling my aunt just yesterday that Jim's ms is at a stand still, no activity on the MRI. She exclaims that is wonderful news and leaves it at that. But, when I mention mj and how it's helping Jim I find myself trying to explain that all of his doctors are behind him, etc. She gets very quiet and I start getting the feeling she doesn't agree with it and that she thinks Jim doesn't need it. UGH

Sometimes I think I may give too much information out. If I didn't tell, no one could judge you know? But we trust family but sometimes that gets us nothing. ha!

I hear you Kell..:mad: For me. the problem seems to have been solved....noone asks me to go out, anymore...LOL!

I like Joelle's advise...Tee hee!!

I've given out the websites for the NMSS and also Multiple Sclerosis Sucks (it's a little easier to understand) to my friends and family. If they want to print it out they can - I'm not going to the expense or trouble to do it for them. I think it's the least they could do...if they are truly interested in me and my disease. But...it's a good suggestion to use for those people you know don't have a computer. :)

Quite honestly, I don't really care if I look my best anymore. I mean, I don't wallow in my own filth or anything. :o I do get up and take a shower/wash my hair everyday but if I'm not going anywhere I don't bother with makeup or fixing my hair. Why bother? It just uses up energy that I need to conserve. If I have somewhere to go (doctor or store) then I do put on makeup and dress appropriately.

I did sort of snap at my sister, though. I know she heard the aggravation in my voice because she ended the conversation soon afterwards. :rolleyes:

The way I see it - these people are my family and friends. If they can't be bothered to try and learn a little about my condition then they have no right to make assumptions about me and what I can and cannot do. I mean, I would do it for them...I'd try and educate myself on whatever it was they had so I could offer appropriate help if needed.

I'm trying this approach next time. The "awkward silence" would work quite well with these people I'm referring to!! :p

You know, I did tell her today that there's a lot of info on heat and its effects on people with MS on the NMSS web site. Wanna know what she said?? She told me that she had visited the site but it was too difficult to navigate!! :eek: :rolleyes:

I give up!!

OK - now I really dislike Tanya............:rolleyes:

Yeah, Kell! Meet me in TN, we'll go kick some Tanya!!!!:mad:

I completely agree Kelly. If someone in my family has been ill I've done everything in my power to find out about the disease\condition. It just ****** me off when people can't be bothered to even find out the basics! Argh! Yea, I'm using the p word, but it could be much worse :D. Oh, by the way, I'm sooo glad you're not wallowing in your own filth, ROTFL!

I'm ready....I'll distract her (shouldn't be too hard :rolleyes:) and you can do the "honors"!!


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explanation
 

I have to share something really funny that happened when I tried to share a website with a friend that wanted information on MS.

For longer than long, I have not visited MultipleSclerosisSucks.com

So I told her to go to MSSucks.com

Memory lapse on the name of the site.

oops...wrong site. She got back to me and told me that although the site may have been informative, she did not really think that it explained MS at all.

The wrong site was...ahem...x-rated.

So if you get tired of explaining, you can always tell them where to go...;)

Tell her to visit multiplesclerosissucks.com ...she may even see her own selfish self there..LOL..:D

Isn't that the truth!! :rolleyes:

I have given her that website before - and I think she said she has visited it but I've given it to so many people I can't remember if it was her that said that or not.

Maybe I'll email the website address to her again....hopefully she'll take the hint. :p

now kelly if I may ask could you explain this to me again

I know i have had same trouble with the heat or cold and my memory issues

what part of this didnt they understand

Apparently all of it, Frank!! :D

Wow - it must be something in the water in Georgia this week, huh? I'm having the same problems as you are, Kelly! This weekend is a family visit (150+ miles of driving two days in a row), and I have begged to have it rescheduled, as we have a busy week next week, and it's hot as hades here right now...NOPE.

I've given up explaining things to my IL's...they don't try to understand, so they just can be left out of things. My MIL's favorite phrase has turned into "do you need to take a nap?" - like that helps everything. No, I don't need a nap - I don't remember naps helping when my right side goes numb, do you?

My husband even explained that I'm having some problems with my "day-after-Avonex" stuff - still nothing. Guess we're in for a fun weekend. What's it going to be...something like 150 degrees?

BTW - if you want to carpool to go "kick some Tanya" I'm right down the road...LOL...

Sounds good to me!!! Cindy is meeting us there....so we'll all take turns whippin' Tanya into shape.

The nerve of her.....laying out in the sun. :mad: I'd hate to see what I'd be like if I laid out in this scorching Georgia sun! Not only would I be red as a lobster but I'd still be layin' out there now 'cos I wouldn't be able to get up!! :eek:

I'm sorry your in-laws are so non-understanding. I don't know how mine would react to my illness as I got this crappy disease after they were not in my life anymore. It's just as well....less people to explain things to (over and over).

I hope your trip goes well and you can let someone else do the driving. What part of GA do you live in? I'm in North Georgia...Gwinnett County.

Take care!

Sorry guys but you'll have to drag Jim and I down there with you to kick some Tanya butt. And to think I sent Tanya a MS Walk shirt some 18 years ago. Let's make her put it on over her bathing suit and lay her out in the yard! :p

Poor Tanya, it isn't her fault!

A while ago I posted a thread asking about sharing creative ways to explain our various symptoms. What I got was a few responders (including our Kelly) saying they're sick of explaining, and sharing creative ways to tell people "bite me". :D

If somebody really, really wants explanation, I have some ready. Most of the time they mean well, but it seems as though they either want to argue with you or say "I know just how you feel...."

I agree with those who just get sick of it.

Hi Kelly!!! I know it gets frustrating sometimes.

People truly just don't understand.

Anymore, when I go to a family gathering ,I wear my MS SUCKS tshirt (It's a white tshirt with huge red letters)


Not one person asks me how I'm doing, Is the meds working, etc......

I like it better that way:p

Ooohhh Beth! I could make a shirt that says MS Sucks and so do YOU if you ask me why! lmao

Kelly - :hug: to you!!!

I just made a long post of my own under Social Chat.

I wish I knew how to get others to understand your sick and there are things that are going to make you sicker.

I finally found something on MCS yesterday that some what got thru to DH. It said that these chemicals/fragrances that most others came be around and don't bother than that a person with MCS is 1000 times more sensitive to those chemicals/fragrances. I told him that was why I could even smell them when he couldn't.

I don't know if there is anyway to get thru some people but I'm always looking up stuff on it hoping I can find something. :confused:

HUGSSSSSSSSSSSS

try that with being undx then it really is fun to answer over and over..how heat or how I get with humidity...ugggg hugsss,sarah:)

I was there for YEARS my self. Looking back I have had these same SX for over 15 years, they have just gotten worst over time. Been really trying to get a DX for about 10 years.

It has gotten to the point where I just say 'no' and don't bother explaining or trying to 'educate' family, including my DH at times. I find I am just repeating myself to those who aren't even listening. Maybe next time I'll try the lines you guys/gals use!!

True Karousal, you get to know the ppl that really want to know and try to understand and others who are just hoping you get better without understanding...so in a way they both are usually someone caring about you..cause the one might just be bummed not to get to spend much time wiht you..hehe hugssss,sarah

she was close sandy.

tanya has PMS.

:wink::wink:

Priceless!!!

or, I've got lesions, how 'bout you?! ;)

Herekitty...BUt you look sooo good, what do you mean you don't want to go out in the heat? it's such a nice summer day ;) :hug:

I know healthy people who don't like to get out in this heat! Geesh....they figure they've got all this energy and cannot comprehend your not having the same levels. I used to get it from my own mother. Then she started to 'get it.'

Thanks for the thread!:grouphug:

How about one like the "got milk" t-shirts? Except this one would have a picture of a brain and say "got lesions?" :D

Can't bang my head against the wall...
 

Well, for some people, PMS might just be worse than MS. But, only in their own minds and opinions.

At least people with MS probably wont become homicidal maniacs just because someone ate the last chocolate bar in the house and didnt replenish the stash.

I don't know.......we're talkin' chocolate here..........:D

I try hard not to cry in my milk about the sxs...but it's so difficult when you feel awful, are undxd, and don't know why you feel so sick...it takes over your life, know what I mean?

My DD wants me to go back to the neuro, but my DH wonders if his NP's dx of depression is right....thanks for the support, honey:(

I'm trying hard to say, "I'm okay," when others ask how I'm doing. But I'm sticking to my guns and telling my DH like it is when he calls every day from work and asks. He's sympathetic and supportive, but it still drives me crazy when loved ones and the doc just don't get it...

We should also all get tshirts that says, "You like summer? You can have it!"
I like the cold of winter more than ever...:(

That's exactly how I feel. My bro in law has a new baby and as soon as I walk in the door he hands him over to me. I am in so much pain after 2/3 minutes of holding the baby and he is just sooooo clueless. Ugh, at least my hubby takes the baby as soon as he sees what is happening.

I don't have MS, but find this thread relatable in my own way. I have PN.

TJ

I am also tired of trying to explain to my family and some friends that I cannot tolerate heat and have terrible fatigue and there is nothing I can do about it.:( I do not feel refreshed after my nap in the afternoon or having a good nights sleep. I am fatigued all the time and have been the entire time that I have had MS.

When I was on Avonex, everyone kept asking me if I was feeling better. I kept telling them no, the shots try to keep my MS from getting worse and do not make me feel better. I feel like crp and now have the problem with the damage to my thigh muscles and nerves to deal with.

It does get old going over this for the last 16 years but my best friends understand and know when I am fading when I am out with them. Thank heavens for best friends.:D