Adults living with CF

[littledebbie]

Ugh, I'm 26, work and live alone, getting it done is not possible. I just can't. and while I know well meaning people say, well your health is most important, you may have to quit your job etc. Okay, how do they purpose i eat and pay rent, becasue here in CA disablity is so low you can't do both and if you live with a family member they lower the amount so you are just stuck with living in poverty. nice. So until I meet some miraculous man that wants to marry me, with all that entails, and makes it able for me to stay at home (which means he needs a good paycheck and nice benefits)I'm cutting corners. I get sick, my PFTs are in the 20's somewhere, i don't really do PFTS anymore becasue it's depressing and I don't feel they're a good gage on my health anymore. Sometimes they're bad and I feel fine, sometimes there better and I feel worse. Besides worse than 20's...if they get that low I don't wat to see them , if I wasn't depressed that would for sure get me there. So I try to do better, but it's a struggle. I lean on my Mom a lot. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's an A+ cook.

 

[perl]

Debbie,

I hear you, girlfriend. Kudos to you for making it happen. I too live in CA-- bay area, no less, and it would be impossible for me to live on my own w/ the disability benefits I could receive. I work full time, but the last year has been rough. I took a month-long leave of absence not too long ago (benefits of working for a big company!) and man, was it fantastic. I was well-rested, not as grouchy, more social, never skipped any treatments or vest sessions... I haven't yet figured out how to work less & have enough money, but I feel confident I'll find a more ideal situation eventually.
Hang in there! An opportunity will present itself.

 

[anonymous]

I am really active and it helps I love sports. I swim, cycle do weights plus the flutter (phyasio
when watching tv.

I also have alyasd had jobs such as worknig in a gym i also studdies health sciences at university and work in sports and recreation incidental exercise also helps parking furhter away walking to places wihtin distance instead of drivign, do things whilst watching tv like physio, concentrating o breathing.

IMy lung function is always 90-100+ per cent and I attribute some of that to my activity levels and my compliance with treatments I dodnt awlays do physio but I figure I enjoy running and thnigs alot more as ways to clear my chest I also figure if i dodtn do them ill end up in hospiotal which I definitely dodnt want!!!!

genetics plays a huge part but everything you can do to minmise the impact is worth it. I look at it as an investment in your own health.

But agree it gets a bit much at times just try and be conscious of being active and things you can do whilst doing your meds and physio etc like tv reading and whatever else.

hope that helps

jake 27
Melbourne Australia