you don't look sick

[gilders]

I don't need or want sympathy for how I'm feeling, but would like people to understand. I have many complications with WG and other illnesses that cause pain etc. But the one thing that is more debilitating than anything else with my illnesses is the chronic, severe fatigue.
My children are now young adults and I really want to be setting a good example for them with good work ethics. My 17 year old just wants to sit and play computer games all day and neglect his studies and the elder 2 (both early 20's) thankfully have jobs and are working, but constantly complain about working 40 hours and believe that it's too much.
They were too young to remember the 60 hour weeks I used to work when I was their age even though I'd already had a few relapses of WG. The relapses and damage to my kidneys eventually caught up with me and I'm no longer working.
It's so hard to try and motivate them when they see me spending a lot of my time sat down with no outside appearance of how ill/tired I feel.
They don't seem to understand that if I do a simple job like empty the dishwasher, I feel as tired as they do after a 10 hour shift at work.

On a financial perspective, in the UK at least, claiming benefits is hard when you explain your main disability is fatigue. It doesn't seem to be considered debilitating. If only they knew........

[annekat]

Pete, that all makes sense, and people should realize that when there is severe fatigue, there is a reason for it. Not having kids, I don't have to put up with what you go through with yours. People should realize that just because a disease is rare and they haven't heard of it, or can't pronounce it, it doesn't mean it is any less real or less debilitating to the person who has it than any other disease. And the people who dole out benefits should take the fatigue, pain, and all the rest of it, seriously as reasons why a person can't work and needs help. Logically, one might think that a rare disease might get even more attention, and more help might be offered, since there won't be a lot of people needing the help for this specific thing. Instead, since it seems obscure, and the term "fatigue" seems vague to them, it gets swept under the rug. It's very sad.

[Alysia]

Thanks everyone. I knew you understand. l love you all

[mishb]

If you wake up - then it is a very good day (the alternative is not worth thinking about)

[windchime]

[IMG]mydocuments/1544406_1474874449391367_1557746694_n[/IMG]

[Alysia]

[IMG]mydocuments/1544406_1474874449391367_1557746694_n[/IMG]

Cindy, I can't see it. maybe others can ?
you can post in on your facebook and then do copy and paste here.

[annekat]

Cindy, I can't see it. maybe others can ?
you can post in on your facebook and then do copy and paste here.

I can't see it, either. And I've also had trouble posting pics from my computer to the body of a post here. I'll have to try Alysia's method, as well. But it shouldn't have to be that much work, and it used to be easier. I don't know why the change.

[renidrag]

I couldn't see it either, hey new avatar. I don't have any luck at all in posting a pic or a link. Something to do with being "electronically challenged."
Dale

[Alysia]

Hey Anne, you look good

[renidrag]

I thought that since I don't look sick, I could sneak that I have an appt with Pulmonary today, have been experiencing right lung pain and shooting pains in my left lung. At least I think so. Probably won't have any answers today but hoping to get x-ray or CT scan. It has been about a year without a look see.
Dale