I will preface this blog entry by saying that overall Cysters have really good attitudes and are able to roll with the punches. If we didn't we would never be able to survive having a progressive life threatening disease. With that being said, CF STILL SUCKS!
There are 1,001 reasons that CF sucks, but I felt like giving a little gripe today about an aspect of CF that really irked me this morning. My husband had to be at work 30 minutes after I have to be at work. We both take about the same amount of time to shower, do our hair (mainly because I brush and air dry while he puts gel in his adorable curls), get dressed, eat etc. I still had to get up 2 hours before he did so I could sterilize my nebs (oops, forgot last night) and do my treatments. I would love to get the extra sleep time that is always spent nebbing and coughing. Blah!
Okay, your turn. I know there are endless reasons CF sucks, but today (or whenever you read this) feel free to write a little gripe and I promise I won't judge you or think you have a bad attitude because in my book ut is okay to complain once in a while...
I have a new wheeze that won't go away and it's keeping me up at night when I am just SO TIRED!!! I want to sleep SO BAD but when I exhale, I hear a "pheeeeewwwww" sound! AHHHHHH! =) And, I totally feel you on the getting up early b/c you forgot to soak your nebs. So annoying!!!!!
ReplyDeleteOh, I have so been there! I need it quiet to sleep and when I am the one making the noise...forget it! I hope your wheeze goes away soon. It really is beyond annoying!
DeleteOh man, I hear you. It frustrates me when we have to leave an evening event earlier than everyone else because I still have to do therapy before we can make it to bed. (Also: I need a crazy ridiculous amount of sleep—11 hours minimum. So that is hard to get if I have to fit therapy in with ANYTHING else.)
ReplyDeleteThe thing that's bugging me this week, though, is my horrible immune system and the fact that I am so, so tired of "sick" being my default setting. I've had about 5 times in the last 3 weeks where I thought "wait! I'm getting better!" only to wake up sick the next morning.
Totally relate to leaving early to make sure you get your treatments in and in bed at a reasonable time. I feel like a party pooper sometimes!
DeleteI am so sorry you are feeling sick! There is nothing more frustrating than thinking you are getting better only to realize nothing has changed :( I hope you feel better (for real) very soon!!
Oh man, I really relate to this post. Lately, since I've been drinking more water, I've been getting up in the early morning hours to go pee. Then, it's followed by an hour of coughing (since I stood up and walked to the bathroom you know, 3 feet away?) and then I can't get back to sleep! Gah!
ReplyDeleteI also hate when I've climbed into bed, settled down, only to realize I forgot to take one pill, or usually it's my last puff of my advair inhaler. Getting up and going downstairs is soo brutal after you're cozy in bed. Especially in the cold winter!
Hey Beth (and anyone else who has problems with night or early morning coughs) - I have started keeping an albuterol inhaler by my bed and a lot of the time when I cough at night, a couple of puffs on that along with a good cough or two are enough to let me go back to sleep. I was getting to the point where I was up in the middle of the night or early morning at least once a week doing therapy, and it was SO frustrating. This doesn't always fix it, and it definitely doesn't get me as clear as doing a full treatment, but sometimes it's *just enough* so that I can get back to sleep for a few more hours.
DeleteI also keep vicks vapo rub by my bed, and believe it or not, sometimes rubbing that on my chest after an episode helps too. Can you tell I hate my night cough and hate getting up to do therapy when I'd rather be sleeping????
Oh I hate the stupid night cough that comes from getting up and moving! Sometimes if it wakes my husband he will "beat" me which stops the cough, but if he doesn't wake I am usually too lazy to do a treatment, but then I don't get any sleep.
DeleteCindy- I will have to try vicks and see if that helps. I only use albuterol in my nebulizer so I can't try the inhaler trick :(
You should ask your doctors for an RX for a "rescue inhaler" with albuterol. I have bad asthma, especially exercise-induced, so while an albuterol puffer is not part of my regular treatment, I have it on hand in case I need it when I'm out or can't access my nebulizers. But it's been just the thing for the night cough!
DeleteInhaling Hope-I cannot believe you don't use Albueterol in a puffer! I actually only use a puffer and never do a neb....saves a lot on time and it is shown to have the same affects if not better. Have you tried a puffer in the past and it just doesn't work as well? I use a 'spacer' with my inhaler which guarantees the meds to make it all the way into my lungs.
ReplyDeleteI used to only use a puffer and then one day I ran out and resorted to my neb. I found I felt so much better! I know they should be the same, but I think the fact it takes 15 minutes allows my lungs to keep opening and allowing for more meds to get deeper in my lungs which opens them further. Maybe it is psychosomatic, but I swear it made a huge difference in how I feel.
DeleteMy gripe is when people tell me I am so skinny and how they wish they could be this thin, um no you don't because that would entail at least two breathing treatments a day, including the VEST, endless coughing, taking pills every time I eat. Oh yea, plus it sucks TTC (although this is not just for CFers but had to throw it in.! Ugh.....It really makes me angry when it is the skinny women who complain, WTH!!
ReplyDeleteThat felt goods, thanks :)
P.S. I am so glad to hear how well you are doing with you pregnancy!
Haha! I agree with the skinny comments especially from skinny people! I would love to be a little thicker and NOT have CF. People also don't understand that trying to gain weight is as much of a pain as trying to lose weight!
DeleteThe ttc thing and infertility in men has to be one of the worst parts about CF! I really wish someone would take the time to do more research on ttc and CF so that cysters could get more answers and better approaches for success!
I should definitely say that a puffer does not work nearly as well for me as a nebulizer. Supposedly they are the same, but I did read somewhere recently that some people are helped more by a neb, and I think I am definitely one of those people!!! But it's usually enough to let me get back to sleep, at least.
ReplyDeleteAnd I agree on the "it sucks TTC" comment! ;)
I think I will ask my doc for a puffer for those night coughs cause nobody wants to get out of bed in the middle of the night to neb. Now that I think about it there are times I can't use my neb (like when i am running errands or at work) and feel tight so it would be good for those times too!
DeleteYeah, that is what mine is for. It's basically my "rescue inhaler." I have particularly bad exercise induced asthma, so I need it a lot if I'm working out or something.
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