This is the best analogy I have. I am treading water. My doctor says often, we just need you to keep treading water. It's work and it's getting harder and harder, but just keep treading. You know what that's like? It's like asking a person with less than 20% lung function to work for it, that's exactly what it's like.
I'm still treading water.
The last few weeks have been terrible. The last 3 days have been so much better. I think I was pulled under water time and time again and the cycle left me tired and discouraged, in pain from the struggle. A vicious cycle. Takes me more and more time to bounce back and start working at it again. Yesterday and today I feel like I am treading comfortably again. Tired, but head above water, even enjoying the sun on my face from time to time.
I have started my Toronto General Hospital (TGH) physio sessions at the treadmill room. I'm 20 years younger than the oldest person in that room (since no CF patients are allowed in the room at the same time, so it's mostly people with COPD and the like). Much older people, and much more healthy than I am. CF is a very different illness. What must those people think when 20 or 30 somethings come in looking as thin and tired as we do? One lady, a wife to a gentleman waiting for a transplant, said to me, but you're so young!! Yeah well I don't feel young. I feel old. All except in my mind, in which I feel like I want to go out dancing or to a friends wedding, or the cottage....oh that's what I feel like.
It is such a relief to feel a bit better, I am so happy to feel this way, that I cannot imagine what feeling much better will feel like?! I really can't.
Sorry, not the happiest post. I'm grumpy. Tired and grumpy. So to lighten the mood I post a funny picture of Scarlett from this morning. She wanted to eat, not to be photographed. Can you tell?
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7 comments:
Nat -
sorry to hear that you are feeling crappy and grumpy. But then..you should - treading water is NO fun!!
Scarlett looks amazing..she is so beautiful!!!!
I can't even begin to imagine how difficult it must be for you and all others suffering from this awful disease Natalia. I pray that your call comes soon.
Little Scarlet is so adorable!!
I can honestly say that I do know how you feel.. it's no fun. Maybe a post a wrote in April, 2008 (after waiting 2 yrs for lungs - I know you won't wait that long!!) and 3 months before my tx might encourage you.
I know it's hard to imagine what it will be like after tx. I had trouble imagining it as well... but it will come and it will be GRAND and you will be able to do ALL the things with your body that your mind is telling you you want to do... Keep your chin up.. Hugs!
http://oceandesert.blogspot.com/2008/04/2-mile-bridge.htmlhttp://oceandesert.blogspot.com/2008/04/2-mile-bridge.html
OOps! That link was repeated twice!
http://oceandesert.blogspot.com/2008/04/2-mile-bridge.html
Hang in there Nat. It's all going to work out. And then you will never look back. Hugs and love, Sarah and Brielle
Haven't seen you post for a little while. Hope you are ok and just busy with the beautiful Scarlett.
I totally know what you are talking about!! I have been waiting for over a year and feel like it cant come soon enough :)
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