Don't want pity but.....

[ladybug]

I've been noticing lately that I seem to have to explain how crappy certain things make me feel and how I get really tired "cause of CF" a lot more often. I even notice I have to tell my husband more often, "Well, I'm just really exhausted... I'm short of breath.... my blood sugar is too low to continue lifting weights... etc..." It sounds to me like a big fat excuse that I'm getting really tired of using, but I really DO feel these ways, and its really starting to piss me off that I have to constantly remind others that I don't feel as good as them and NO, its not an excuse. I know my hubby knows I'm not faking, but he kinda looks at me like I'm just tired and don't want to keep lifting weights, etc.... Its getting kinda old.

I also notice I have to explain how I can't be around cigarette smoke to every single person that comes to visit us here in Vegas! These are friends I've known for ages, and when they're reading and looking up what to do in Vegas when they come to visit, they always suggest stuff that may be in a smokey place. My parents also like to go to casinos and stuff, which I just can't tolerate very well, and even then, I find myself saying, "well, I'd go, but the smoke is just too much...." or, when people come to visit, I always seem to be saying, "well, as long as we only go an hour or so cause I just can't tolerate it." Wouldn't this be peoples' first clue NOT to go to these places? I mean, why even ASK me about places like this? Why even suggest we hang out in casinos???

My main reason for posting is cause I'm just tired of having to REMIND everyone that I don't experience life the same as them. I don't have an infinite supply of stamina, my blood sugar WILL go down with lots of activity, I do get short of breath (even though they may have no idea what that feels like, one would think they'd have the scruples to know second hand smoke can cause this!).... I'm just tired of feeling like I have to explain myself. I do try to empower myself and, on my good days, I run and talk about all these goals I have, but when I feel like crap, should I really have to feel guilty and feel like the other person thinks I'm making an excuse?!?

Maybe I'm just crabby today, but I just really really get tired of having to remind people that I'm not like them, even though I may look it!

 

[HairGirl]

I feel the same way sometimes Sonia, just because I look alright and act alright, I don't complain a lot, doesn't mean that I'm fine and healthy!!!!! But then again I don't want peole not to invite me to do things assuming that I'm not healthy. But definately the smoke thing friends should remember!!!!

 

[Allie]

*Pity* Just kidding lol. Really, I think people just forget about it, as callous as they may seem, if you're anything like Ry, you're dynamic enough that people forget you're sick, so when they have to take it into consideration, it surprises/irritates them.

Vegas is hard, beacuase there's smokeing EVERYWHERE, so anythign they want to do would eb around smokers. IT sucks. *hug*

 

[JazzysMom]

Alot of people including my husband forget how easily I get run down or wear out or just plain shouldnt do things. I also hate having to give the reminders, excuses or whatever you want to call them. There have been times that I do or go whatever or whereever it is just to prove to someone that I was right. I actually did this with a trip to Floriday in July 2003. Everyone including my hubby thought I jumped the gun by saying I am not going to Florida in July. GUESS WHAT....I ended up in the hospital when I got back. Hard lesson, but definitely a good reference point or a good I told you so scenario. Its hard to balance things without feeling like a pain or an odd ball!

 

[NoExcuses]

.

 

[debs2girls]

Sonia, I feel the same way about my dd's health...or lack of lately. I am constantly telling people not to come around when they know they or their children are sick, dont smoke around my child, dont let her go out to play when it is cold/rainy (that is at school)....
I have made up a new moto:


Common sense isnt so common anymore.

I think I will add that to the bottom of my name.

 

[HairGirl]

Debbie I agree with you!!!! I like that motto!!!! Common sense isn't so common anymore.

 

[littlemisssilly]

Hi Ladies,

As always, I can also relate to this topic. I get really disappointed sometimes at having to explain / remind people that my energy levels are that of 80 yr old. Just because I look 'normal' and most of my firends realise that I have a mild form of CF, they still look really suprised or find it funny that I sepnd my weekends in bed for most of the day. It's like banging your head against a brick wall.

Also, it drives me nuts that people think I'm overly paranoid when I ask them if they have a cold or sore throat etc before I kiss / hug them when meeting them. I always seem to get the line "oh, it's a cold, you'll get over it" or ...... "yeh, I've had a sore throat for the last three days" after they greet / kiss me !!

Oh and lastly, I feel like punching people evertime they say "oh you look tired" !!! Well, try living with a terminal illness and see how refreshed you look!!

 

[Ricky]

go to chat room we're trying to get some stimulating conversation going.

 

[anonymous]

LOLOLOLOL It feels so good to hear everyone here say that they are tired too. It is so nice to know that I am not the only one that wants to spend the weekend in bed. I am 29 with CF and I am a stay home mom with three children. (Yes, all mine and the doctor's freak out about that one) My husband gets home from work and all I want to do is curl up on the couch and take a nap. It is hard to explain to friends and family that I am too tired to go out in the evenings. I am giving all that I have to my family and me. I don't have any extra to waist on non-essential activities. (Family trips are still essential)

My mother in law finds it extremely annoying when I have quests wash their hands with antibacterial hand wash and my children wash again when everyone leaves. First thing the kids do when they get home from school is wash their hands. Some people think I am crazy but I tell you what I am healthier for it and so are my children.

Katie

 

[Ratatosk]

We hardly know anyone who smokes anymore, so it's a shock when we go to an event and someone lights up a cigarrette right next to DS -- First of all -- he's still a BABY! Cmon, smoking in front of a child?!! And most places in our area that allow smoking, don't allow minors -- so we can go out to eat and not have to worry about asking for smoking or nonsmoking.

Last year we went to DH's cousin's retirement party and I spent the entire time outside, dodging smokers. My MIL was no help, 'cuz she was too concerned about offending anyone instead of her grandson's lungs.

We just found out a cousin is getting married and we were all excited about going to see relatives from out of town, getting a hotel with a pool, so we can all visit and then my MIL tells me that the reception is going to be held across the border at the VFW, and hotel reservations are being made for the hotel across the street, so people won't have to drink and drive. Before DS was born, I'd been to wedding receptions and dances at the VFW and it was way loud and way smokey, and the hotel is just a barebones place -- place to crash, no amenities. So looks like we'll probably just drive up for the afternoon to attend the wedding and leave.

We're not even going to bother telling my MIL or anyone ahead of time because we'll get in trouble for -- not attending a family event, or someone might tell the bride and think they'll have to change all the wedding arrangements and she'll have enough to worry on her wedding day.