Question for those with chronic illnesses

[luvwinnie]

Ever feel "pressure" to act normal/healthy? I ask this because my good friend at work was making plans to go out to dinner the first day we get to our convention in Calif. even though I had told her I'd be doing room service and then going to bed...esp with the time change there is no way I can get up at 5, take a 6 hr flight, work until about 5:30 (8:30 my time) and then go out. ANd she is really acting annoyed..."take a nap" she said...if I take a NAP, I will not be getting up til the next day...my body will be so exhausted and thrown off. Anyone have similar experiences?

 

[mtblujeans]

Don't worry about it. Just do what you need to do to keep up. I travel like that. If I keep pushing myself to keep going when I should rest, I could be down the rest of the trip! That's no fun!! People just have to adapt to the way other people handle things...it's part of being an adult, IMHO.

 

[wickey's friend]

luvwinnie --

I can't imagine what you go through, but I wanted to send some to you. Your friend will have to get over it. You know what you can and can't do, and if you need to go to bed, that's what you'll do. Hope you have a good trip anyway!

 

[JennyMominRI]

I do..Luckily,most of the time I feel normal..If I have the most basic of illness ,like a cold or flu,I have to minimalize it as best I can..If not other will worry that it's the end for me. When my friend Andrew from the UK visits he walks sooooooo fast. I practically ran to keep up with him.He forgets my heart is bad and I don't want to remind him.
I also feel self-appplied pressure to look good..People have this image in their head of what someone with AIDS looks like. I want people to see/realize that one can look not just normal, but great and still have the disease
I walked around with Pnueminia and CHF for 2 weeks I have to be near my deathbed to admit to being sick

 

[Mysteria]

Yes I feel that pressure sometimes. People who are generally healthy have a hard time grasping how difficult it can be. I try to be patient with them because I know they just don't understand but it gets hard at times. Stick to your guns and do what is best for you.

Myst

 

[luvwinnie]

Thanks, everyone. Esp for the hugs!

 

[chris1gill]

First of all, can you sleep on the plane? try to get as much rest as you can, that's what I do But, people who are your friends should understand what you are going through... if they aren't close enough to understand, then they aren't really worth losing sleep over! Do I ever feel the pressure? Yes, but I pressure myself, my friends and family don't dare!

 

[grinningghost]

Yes luvwinnie - I know what you mean. I deal with it all the time with my family. Do you want to go here there and everywhere? No, I really don't. I quit working so I could REST during the day if needed, not so I could run all over.

I'm another one who "looks great", yet I have MS, which is quite the disease, even if it's not always visible to others. I also was raised not to complain about symptoms, so I don't, which further complicates things. People assume I feel great because I'm not whining.

So here's a great big hug - you need it girl!

 

[Mysteria]

Thanks, everyone. Esp for the hugs!

Well if it's hugs you need right now that's something I can do!


Take care of yourself and good luck with the convention.

Myst

 

[supercarrie]

I understand completely what you are going through. I have hyperparathyroidism, which gives me a range of problems from simply just being tired all the time to kidney stones pretty much constantly. I hate to bring it up or even take pain medicine (for the stones) when I am in front of people, because they will always comment on it. Obviously I continue on with my life as best as I can, I still go out and have a good time, but bring my medicine with me. If I even subtly try to take a pill in the bathroom, people act like I am doing it to show off! Or if I am having a "bad" day and need extra rest, I get called lazy. I sometimes wish I could tell them that they should try living with the exhaustion and pain of the stones, and the numerous ER visits. (I don't of course, just smile and move on with my life!)

 

[Christine]

I know how you feel. I had my thyroid removed 10 years ago for thyroid cancer. Even though I am on medication now and I'm "supposed" to be perfect, I have never felt good since then. I get tired much easier than most people my age and I just can't keep up with them. So, when I go on vacation (or God forbid, travel for work) I really have to take it easy. It's kind of embarrassing, but I am usually completely honest with people and they have been understanding. Believe it or not, once you tell someone you've had cancer, that usually gets their attention even when they are healthy and have never experienced illness. I hate to "use" my cancer diagnosis in that way, but it does get the point across.

 

[luvwinnie]

I think she doesn't even realize what she's doing. I'll have to talk with her in depth if it keeps up I guess.

 

[chris1gill]

I think she doesn't even realize what she's doing. I'll have to talk with her in depth if it keeps up I guess.

VERY GOOD! Don't forget, people don't actually realize what you are going through unless you tell them (once)... I just say it all very matter of factly, it seems to work best that way...

Good luck & do rest on the plane