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: