This is straight up complaining. I apologize in advance, please feel free to deposit your own current nagging annoyances in the comments section and we’ll all feel better for having dumped a bit.
Tomorrow I have a nice, special book giveaway; but today I kvetch. If you’ve noticed I’ve been quiet, it’s for 3 reasons:
1) I’m knee and elbow deep in History on Two Needles, and it’s going REALLY well! I’m putting the kickstarter funds to excellent use licensing images, upgrading InDesign, and hiring photo assistance. Life is good.
2) I’m friggin’ exhausted. For the past few months my doctor’s been phasing me off of prednisone, and I’m not hungry enough to eat the cat anymore (the cat is relieved) but the Xolaire doesn’t seem to be filling in the gap. I notice each day is a bit harder and harder on the bike – breathing is becoming more difficult. Damn.
3) Slow pain. Bad breathing leads to less biking, less biking leads to increase in pain, and it all happens so slowly that if I didn’t keep track of it I wouldn’t believe it. But there it is. My fibro is creeping up, it’s getting worse. It scares me.
Yesterday a friend was visiting from out of town, I met her on my bike and she and her kids and I went to playground. The kids ran around, I didn’t do much (a little pushing, some kid lifting, nothing really!) Then she drove to my house while I rode my bike.
When I pulled up behind her on my bike – after maybe 3 total miles of riding – I was absolutely wiped out. We did a quick drive around the ‘hood and stopped at my favorite local fabric store, and that brief bit of walking just did me in. I feel like I’m 60. I know this deep, deep exhaustion stems from the breathing, but I just don’t know if I can face going back on prednisone.
My options seem to be:
- Happy and exhausted; or
- Fat, pissed off and able to breath.
Seriously, though, in the scheme of life this is an annoyance, but life is still damned good. DAMNED good. And Gerry’s making tuna salad, so how bad can things be?
A note from one who knows – been there. . . . put your head down & move forward. It will hurt, it will not be easy, but – – – it will take you forward. Between forward steps – – lay down & rest – – or knit. I promise – – it works. Take care – – cut yourself a break. Do what you can, when you can & forget the rest!
Thinking of you –
Marietta
I was told by my primary doc that if you have taken Prednisone for a certain amount of time, your ( my) pituitary gland will no longer function properly and continuing the med is the only option. My Rheumy said the most important thing is to stay under 10 mg.
Something else to look at is the process you are,tapering down, i.e. it works better for some folks to do an every /other day taper, 10/8/10/8/8/10/8/8/8… Instead of 10,9,8…
My current taper down is every-other day. Today’s a pred day, so off on a bike ride!
Hang in there. I have fibro too. I do 2 miles on the treadmill even if I think it will kill me! I am on the 7th med in an attempt to cut the fibro pain to live-able (2 1/2 years of being a chemistry experiment). I know the exhaustion and can’t imagine if breathing was an issue. Take it a day at a time. Very much looking forward to the book – I helped a little on kick starter.
I’m so sorry. I don’t have fibro. I have exercise-induced asthma, scoliosis, and bum knees. I’m in the middle of my 2nd round of physical therapy (this time for my back) and it’s definitely going much slower than it did for my knees. I’ve discovered from reading your blog that I need to get up and bike or walk when I start to ache, or I’ll just hurt more and more. So while I don’t have near the trouble you do, I understand how difficult it can be to do what needs to be done when one can’t breathe easily, and I sympathize.
Fat, pissed off and able to breathe seems just like my personality – and I’m not on anything but Welbutrin and high strength ibuprofen.
I feel for you, Annie. Not having experience with either asthma or fibro I can’t say I feel what you’re feeling, but I certainly do feel for you. Hope you find a good balance of drugs soon
Don’t ever forget that just because you are strong-of-heart doesn’t mean you have to hold up a permanently happy face to the world. We love you. We love your strength, your heart, your passion, your creativity, your generous spirit and all of the other things that make you our Annie. If complaining here makes you feel even a tiny bit better, complain away. I hope you find a way to balance things better with your medication. They could come up with something completely new that will help you even better. Or, maybe not! Who knows? The horse has a big head, let him worry about it.
Go with the breathing. Long term Hypoxia (lack of oxygen) can cause long term brain damage.
Wait a minute – you feel like you’re 60? I’m staring it straight in the face, and I feel great. Sure, every joint I have aches from the hour of cardio I do everyday. But the alternative sucks!
Shari, I’m really glad you feel great!
I meant no disrespect to those who are 60, but I’m 50 and I have such intense pain many days that movement is incredibly difficult. This is not the basic ‘joint aches’ from cardio, but the deep, paralyzing muscle pain of fibro that I fight every day.
The thing about chronic pain is that sometimes it’s so bad that the “alternative” doesn’t seem as daunting as it usually might.
I hope you are able to find something that works best for you. Trial and error sucks when you are in pain so I feel for you.
I had to chuckle when I read about you wanting to eat the cat. Our cat is on prednisone and there are times I think she looks at us and imagines how tasty we are. It is a helluva drug.
Annie, I’m a huge fan of your fiber talents and your political leanings; but I never knew you had fibro too! You are now even more of an inspiration to me. *I* consider exercise taking the dog down one flight of stairs a couple of times a day to pee. The thought of riding a bike 19 miles… wow! I’m 51 too; will be 52 in Dec and spinning and knitting are the only things that get me through the day, other than my amazing family. I know more exercise is better but through this past heat wave (which returns tomorrow after only 3 days reprieve) I’ve been in so much pain there were days I couldn’t get out of bed. Today was a GOOD day. =]
I hope you have many more good days and that your breathing eases. If the choice becomes “pleasantly plump” vs gasping for air, I vote for the full figured girl every time!