A Day In My Life, Not The Quality Of Life I Would Like
Oh my goodness, my breathing has been so bad for the last couple of weeks. I went through tons of albuterol just to maintain. I feel like my lungs are full of thick gunk. I can't feel it but my chest feels tight. I have a six minute walk and breathing test at the end of October (10/31) to see if I qualify for the spiration trial. I failed the test once because I had taken predisone on the cruise and took the test 2 days after I got home. I did too well on one test by one number. They want to retest, they said I was really bad and need this trial. Whatever that means, I have never seen a pulmonary doctor about my condition just the pulmonary medication guy. I don't want to take anything that will prevent me from failing the test again. I have been taking a ton of mucinex, I believe it helps some. Self care is so difficult. I work four 11 hours shifts and it's been taking me 2-3 hours just to get myself ready to get out the door. I have to stop and catch breathe after every little effort. Then walk out to the car, sit there until I can breathe again. Drive to work and walk a block to the office. I take the elevator to the 2nd floor, (after listening to the other peoples ridicule about how I'm lazy - always different people and I don't feel like always explaining). Walk down the hall, sit at my desk and spend 5 minutes trying to recover. At least I don't have a physical job. Many times I haven't had time to prepare for lunch so I have to go out the repeat the walking to my car at lunch (going to my car is the harest because it inclines up). Finish my 11 hour shift. Hope I don't fall asleep again on somebody and get into trouble again. Work with 65 clients throughout the week all manadated by the court. Try to stay focused, (if I screw up it can drastically affect their life including jail). Leave there after 11 hours, sometimes with no lunch. Walk that incline to my car. Drastically out of breathe because the Advair is wearing off and the albuterol isn't doing the trick (have played with the times I take it to try to prevent this). Spend another 5 minutes recoverying and drive home. Go home, gasping for air by the time I get in the house, feel guilty because I haven't been able to exercise for 30 minutes or do any self care for myself and I'm exhausted. I quit sleeping in my bedroom because it's up stairs and just don't want to deal with it. Have to get up in a few hours and repeat the process. I avoid family and friends on the weekends trying to rest up and recover. And I'm fearful as I feel myself declining, How Much Longer Am I Going To Be Able To Keep This Up! When I'm feeling good, this is not so difficult but not so lately. I'm normally a very positive person but just haven't felt well, I will admit, today I feel much better, at least at the moment, that can change any time. I don't like all this negativety but when I finally see a doctor, I want them to understand what I personally have to deal with.
Replies
10/7/08 Felt a lot better today. Started taking the Advair a couple of hours before I leave the office and just that has helped a lot. Think I am feeling better. Much more positive.
It is so difficult to stay positive when you feel lousy! My goodness, I don\'t know how you can deal with those long work hours! You must be exhausted! I sure hope you continue to feel better, and that your spirits have a chance to rise. I\'m thinking of you and sending you healing energy. Hugs, Sue
Wow Shirley, that is a lot for you to deal with. It worries me the distance you have to travel with repiratory illness. I wish there was a way around that somehow. And...how rude of coworkers to make fun and call yo lazy. How old are they? ten? They probably are teasing in fun, but teasing hurts...in fun or not. do not feel guilty because you have not exercised for thirty minutes...what do you think all that wlking is? That is exercise. Feel better sweetheart, and don\'t be so hard on yourself. JoAnn
Shirley you are doing an awful lot and I know you deal with a lot, I wonder if maybe you should cut down a little bit? Stressers don\'t help breathing any. I am glad you said you are feeling a little bit better. Take good care of yourself and don\'t let this get out of control. If you don\'t feel well, just don\'t be in denial on it like I was, I would hate to think of you ending in a hospital. I know that is easier said than done, but that is the way I was, it is always, I\'ll wait i\'m sure I will get better. Take care of YOU and I sure hope you qualify for that trial.
Just a thought Shirley, but you may have to switch to a nebulizer. Maybe with duoneb rather than just albuterol. that just might resolve some fo that breathing problem. Especially where you are having to use so much to get a very small improvment. Just a thought!
Shirley, so sorry to read that you haven\'t been well, it sounds such a struggle and I can relate to that in many ways. but its good to hear you are feeling some relief today. I think Jo Ann\'s point is a good one you might need a neb\' which will help get medication down into your lungs more effectively. might be worth a mention with Dr when you have time.
Look after you and rest when you can. take good care. hugs Lisa x x