Does anyone really read blogs in the beautiful spring weather? I can't imagine what normal people do.. If it wasn't for lack of energy, shortness of breath with pretty much any exercise and even sitting down now sometimes (scares the crap out of me), not being at work and therefore having 8+ extra hours than average joe, I don't know if I would. Even as a healthy CF'er I still had mask and treatment time to entertain, so of course I'd have time to read blogs, had there been any back in the day.
I will continue to write mine, of course. Readers or no readers I love this outlet for my CF woes. Its sort of like doing chest physio, with the purpose being: If I can concentrate all of my thoughts and feelings about CF into one small part of my day (like coughing), I have several hours relatively thought/pain/cough free. So, please forgive the sometimes whiney words as they are my therapy.
Lately I've felt blah. Not uber sick per say, but it all started with a solitary sore throat issue. No other symptoms, just a sore, froggy throat that lasted. Then Eva passed. Then two of my grandparents were dealing with repetitive and serious health issues (still are). Then it got nice out and I wanted to run and jump through the world without restraint. I think these have all come together to make me really bummed about CF. I get this every so often. When it feels like the suffering is too much to handle and I want a way out. I wake up at my usual 5 hour interval in the night coughing and it feels harder than usual and I want to cry. I'm not sure (but suspicious) that it necessarily always equates to an actual worsening of my health, but I'm getting to clinic to be sure.
Technically I should be at clinic about now anyways, but I was hoping the transplant hospital would make their now-overdue call to me before I booked regular clinic so I could be strategic with my trips. I suppose I might as well get used to the constant travelling there. *grumbles unintelligably*
So here I sit, with my oxygen on to combat some SOB symptoms, planning some extra physio and exercise, and dreaming of my active days ahead, particularly at the driving range with my hubby.
Michelle - I'm glad you have this outlet. I remember a year ago this time when I was being assessed and the weather was so amazing and I was SO sick. I didn't even know how bad it would get. I too dreamt of what was ahead. I'll tell you some good news, not in my wildest dreams did I think it would be THIS good. I will admit it took me a bit to get here. But the past month I have just felt things and done things that I have not done since high school, may be not even then. I do YOGA and other things that I used to not even have the guts to do. Spinning classes, step classes, I walk Scarlett an avg. of 5 km per day or more in her pram. I sprint up the stairs, and I carry my GIANT Scarlett all over. So, my dear Michelle, dream BIG - but I can guarantee you, you cannot dream as great as it will really be. xoxo. Nat
ReplyDeleteMichelle...
ReplyDeleteI am glad I have read your blog tonight, I can not imagine how hard it gets for you and how much you yearn to live life more like others. Keep pushing on my dear, keep on fighting, I know that some day in some way, life will get easier. I am so glad you have Natalia to be there as a mentor who actually DOES KNOW what it is like to be you, thanks Natalia, you are a good friend...
M, I'm sending you strength and love. I know it's hard to stay positive and focussed when every little thing take so much effort. I wish I could be there for you in person for support - I could bring my nachos and Veuve, guaranteed to brighten the darkest day :) Just know you have a huge team of friends who love you and are cheering you on every moment of every day. xoxoxo
ReplyDelete