This past year has been brutal and I seem to get knocked down over and over just as I am getting up from my last blow. It seems every time I start to get better I know for sure that this time, yes this time, I am finally getting back to my old self. I am positive that my health is turning around and this crazy year of sickness will be behind me, a distant and horrible memory. And then. And then I find myself sick, in pain, and feeling hopeless all over again
Since getting the flu last February I was hopeful I would bounce back. Why wouldn't I have been, I always bounce back. A quick dose of orals or a few weeks of IVs always brings me back to my old energetic self. And yet, this time I didn't bounce back. It has been over a year and I have yet to get my lung function and weight back, and I get sick so frequently I wonder where my wonder woman immune system ran off to. I have never had a CF flare up knock me off my feet before. I have never known this side of the disease before. I have heard of people with CF getting hit so hard they can't recover, but that just wasn't me, that wasn't my CF. I always bounce back, right? Right?
This realization that sometimes CF doesn't allow you to bounce back and sometimes it does get the best of you makes me wonder where do you draw the line between being hopeful and being in denial? At what point do you admit your body is tired and weak and that CF is starting to get the best of your life? When is it time to make plans for the future that may or may not include you? When do you ignore your fears and stay strong telling yourself that one day you will be healthy again? How many times can you take the disappointment of believing things will turn around and they don't?
I seem to be stuck bouncing around between denial and hope. I have days I feel hopeless and lost and as if this disease has already taken the best of me. I have days that I think we just need to find the silver bullet, that the answer is out there we just haven't found the right combination to get my health back.
I don't want to live in denial, but I just cant accept this as my fate, yet. I know CF is progressive and I know where this journey will take me, eventually. But oh I am so not ready to believe I am there yet. So maybe this is denial at its finest, but I will keep fighting and trying and hoping that tomorrow may bring a little bit of good news and that tomorrows will keep coming.
I have so been in that place many times. Including some this winter - I had finally got to the point where I'd gone a whole month without a virus and now I'm hacking up a lung again. :-( I'm really hoping that the fact that I'm still on my perma-abx will help me get over it sans hospital but mentally preparing myself for it not going so well. :-(
ReplyDeleteOne thing that the last six years have taught me, though, is that it ain't over into it's over. I've had bad health runs that were years long and I was positive I'd never pull out of and that this was sort of the beginning of the big decline - but then for no apparent reason my health finally stabilized. My super woman immune system has been gone for over a decade and I've just resigned myself at this point to getting anything and everything that comes my way, but I still have good periods and bad. sometimes the good periods last nine months or even an entire year. There are no certainties in CF in either direction; it's a pretty fickle disease.
I think you need to remember that your body has been under way more stress in the last two years than ever before, and you have a new source of germs into the bargain. Give yourself room to grieve the frustrations of this period, accept that it is what it is for now, and then move on. For me personally I've sort of found that dwelling too much on the future at all just brings stress, and usually what happens is not at all what I'd expected anyway. ;-) I'll be praying that we both move into a better health patch very soon!!! And don't underestimate the brutality of the flu. Last time I had the flu it took me literal years to get back to some degree of stability.
I am sorry you are having a hard time health wise as well. CF is so frustrating, exhausting, and never ending!
DeleteThank you for writing such a nice comment. I feel like logically I get what you are saying, but have a little bit of a tough time letting it really sink in. My biggest worry is that I lost SO much lung function and am hovering in the low 30s which are numbers I have never ever seen before. I worry the longer my numbers are stuck so low (over a year now) the harder it will be to get them back because of the damage it is causing. I also worry because I really have no spare lung function left :( Even when I was really sick in the past I never really dropped below 42%, but these 30s are really terrifying!
I hope that this summer brings new health for both of us!
UNTIL it's over. Silly gesture typing!
ReplyDeleteMama, listen to wise Mama Cindy. I'm pulling for both you ladies. I don't have CF, but I can tell you this - when I look back at the early childhood years with my kids, a major theme was me feeling low/getting sick/aches and pains A LOT of the time! My 3 boys are all teenagers now, and I'm in my early fifties, and I feel much more physically together than I did as a young mother. Please don't imagine I'm discounting the CF factor - I'm just telling my story, and hoping that you two also get a bump up in your health status once you're out of this initial phase of child rearing.
ReplyDeleteThank you for your kind words! I do think the demands of a little one can be hard on anyone let alone a CFer. I am hoping as she gets a little older I will start to feel my old self again!!
DeleteI agree with the last commenter. Having a baby is seriously hard work for your body and looking after one is even harder work with no time at all to recover from birth. Even mothers without CF have a hard time of it. Also I can't believe that you nursed all this time!!! That takes a huge toll on your body. My doctors basically told me I had to stop nursing at 7 months or I'd be in the hospital constantly. So you have had a lot of trauma and stress on your poor old body for a long while now.
ReplyDeleteI know CF is soooo hard because it's like living on a roller coaster but I firmly believe that you will have a chance at seeing better numbers and feeling much better as your little one gets older.
I basically felt like total crap until my daughter turned 3 and now that I have my son I feel like crap again. I'm seriously hoping that once he turns three I'll have more time for myself again.
Chin up and know that you have so much support and best wishes sent your way. xx
Thank you so much for your response! I so hope you are right. I do find things are getting easier as K is getting older. I could take one more year of feeling like crap if I get to see a turn around. I am just having a hard time believing things will ever get better, but it makes sense that as K gets older (and less demanding) things should start to turn around.
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