So my wii works again. I didn't feel like updating yet again in a wii-dedicated post, so there it is. I've been monitoring my sats a bit more than usual and I swear using the wii has lowered my resting heartrate a little. No change on o2 status though, but it is, as always, early.
I have clinic tomorrow, and we're getting new carpet put in. I have a terrible sense of smell, but our current carpet is a constant reminder to anyone with a nose that we had a puppy just under two years ago. I imagine something so rank can't be good for my lungs either, so I look forward to our upgrade.
While I have picked up the wii yoga (which is arguably the most difficult "wii-ing" I've done to date), I have left my pulmocort and advil routine behind somewhat and I'm sitting here today feeling sort of clogged. Standard for this point in the month, so we shall see how tomorrow goes.
Feeling sort of overwhelmed with my long day tomorrow, I took a shower while blaring music to my currently empty house. Dancing ensued. Whenever this happens I marvel at how good it feels for about 20 seconds and then how the swimming endorphins begin competing with the breathlessness and end up losing. Today, I promptly came out into my living room, threw on my oxygen and kept the party going to my ipod's next few songs. I wish oxygen could cure breathlessness, though I suppose we'd never take the transplant step if this was the case.
I have so much in my head right now about how I'm feeling, but I'm finding more and more that blogging isn't always a satisfying way to release it. For now, I'll dance.
Monday, June 21, 2010
Tuesday, June 8, 2010
wii update- cruel fate?
So last night we had another power outage. No storm, so I don't get it. I watched the wii immediately as the power came back on... and no red light. It's broken again after day one of my big effort to get stronger. As if staying with something isn't already hard enough.
So today I'm improvising. I have no timer, I have no guide, but I have my 02 and my best recollection of what nintendo made me do last night.. so I' m trying.
Hopefully pops can check it out soon and see if he can figure out where the problem is, as my lovely hubby has already diagnosed it with a broken adapter cord, and we need a tool my dad has to confirm this.
It takes a city to keep a CF'er well I tell you!
So today I'm improvising. I have no timer, I have no guide, but I have my 02 and my best recollection of what nintendo made me do last night.. so I' m trying.
Hopefully pops can check it out soon and see if he can figure out where the problem is, as my lovely hubby has already diagnosed it with a broken adapter cord, and we need a tool my dad has to confirm this.
It takes a city to keep a CF'er well I tell you!
Monday, June 7, 2010
Wiiii're back!
Waking up today and doing my usual peruse-the-internet-while-smoking(mask) thing, I remembered my depressing blog post about guilt. I felt like deleting it, though its not any less true today than it was yesterday. Instead, I'm going to go with mentioning my "plan" to get back on track this week in a brand new post.. because if there's one thing I know, its that negative feelings 99.99995% of the time, relate to bad lung phases. If a fairy godmother came and took away my lung issues today, with no consequence, I'm pretty sure I'd be the happiest girl on earth forevermore. That's what I like to think anyways.
So anyways, here's whats going to happen today. I'm gonna get my o2 on, that I never ever wear anymore, and I'm going to do some exercises. Some minor stretching/weight lifting and then I'm going to do some wii. The wii that I intended only for the can't-go-outside winter months. The wii that mysteriously broke on apparently February 26th, 2010 (seriously.. according to the wii fit calendar). The wii both Mike and I each tried halfheartedly, and unsuccessfully to fix a couple times since then. The wii that, on the weekend, during a 10 minute power outage that was attributed to some nearby storm, sprang back to life with gusto when the power returned. If that's not a sign I don't know what is.
And I'm going to book clinic for next week whether they want me or not, whether they are ready with transplant tests or not, and I have a week to get rid of my headaches or else its admission I go.. hopefully to a non-waiting list for beds type of day..
And....... break!
So anyways, here's whats going to happen today. I'm gonna get my o2 on, that I never ever wear anymore, and I'm going to do some exercises. Some minor stretching/weight lifting and then I'm going to do some wii. The wii that I intended only for the can't-go-outside winter months. The wii that mysteriously broke on apparently February 26th, 2010 (seriously.. according to the wii fit calendar). The wii both Mike and I each tried halfheartedly, and unsuccessfully to fix a couple times since then. The wii that, on the weekend, during a 10 minute power outage that was attributed to some nearby storm, sprang back to life with gusto when the power returned. If that's not a sign I don't know what is.
And I'm going to book clinic for next week whether they want me or not, whether they are ready with transplant tests or not, and I have a week to get rid of my headaches or else its admission I go.. hopefully to a non-waiting list for beds type of day..
And....... break!
Sunday, June 6, 2010
Guilt
If there's one thing I'm sure of, its that I can't be a psychopath. I looked up "guilt" on wikipedia (my favourite online resource), and found this description: "Psychopaths lack any true sense of guilt or remorse for harm they may have caused to others. Instead, they rationalize their behaviour, blame someone else, or deny it outright."
Makes me wonder what being a psychopathic CF'er might feel like.
Anyways, so I've been down today (wikipedia on guilt: It is often associated with anxiety, and sometimes depression) and have been analyzing it to a point of finding a common theme. You guessed it: Guilt.
I feel like the hardest parts of having CF, and especially having "end-stage" CF, is this exactly. Here is my more-than-likely-unfinished list of potential CF guilty feelings:
-the guilt one feels when reflecting on past non-compliant days (ie. not doing physio as a teen, not being brave enough to endure a first hospital admission as soon as it was needed) **this one can connect to several of the others such as the next....
-guilt for causing parents heartache your entire life despite not always knowing it, but more and more as you get older and closer to statistical life expectancy, as well as the more you realize the love of a parent for their child
-guilt for your grandparents, who are ailing themselves and don't know how sick you really are and who you pray you outlive to save them the pain
-guilt towards parents who are dealing with their ailing parents at the same time as worrying about you
-guilt for being the more doted-on sibling growing up
-guilt for not being able to stay out as long with, do the same activities as, or make it out at all with your friends (who may or may not understand why fully)
-guilt for being a not-so-prime mate for your partner who you suckered into loving you
-even more guilt as the years pass and you've finally accepted that your mate loves you for who you are, however now you are a "new" sick person and much worse and more of a burden that they didnt "sign on for" initially
-guilt towards any child who helplessly began loving you as soon as you started dating their uncle, and doesn't understand at 6 years old why you can't be as fun as the other adults in his life. And who risks losing their live-in aunt at a young age
-guilt that you're even thinking of being a parent after feeling guilty about the above
-I even feel guilt towards the people I get angry at.. sometimes strangers, sometimes family, who don't make the best use of their healthy lungs and lives. For when I'm rolling my eyes inside at someone who is complaining about something trivial, or who is making a big deal out of something frivolous..
-and perhaps, though i haven't got there yet, survivors guilt towards : your donor, other CF'ers who didn't make it as long, and the guilt you feel if you "waste" a day with your new lungs by lounging on the couch
It's alot, and though it rarely all hits at once, when it does it's hard. And you remember that you must go on with your current moment, and look after yourself right NOW, because that's all you can do. But its SO much easier said than done.
I also think that when you're working through these feelings (every, say... 2-3 days it seems for me and most often when I'm feeling worst) you tend to talk yourself out of the rut by reminding yourself that you are worth everything just like everyone else, and you deserve your own dreams and wants. Only, when you most need to 'get' this, it sounds alot more like a sesame street skit than the truth.
For me, when I'm in the middle of convincing myself I deserve my own dreams, I think it comes off selfish and incredibly strong willed, and maybe even bull-headed. I compensate for my weak feelings by getting strong and letting no one stop me. Frustration is enhanced when I can't get what I want. I swear a huge chunk of us CF'ers are like this. I just hope our loved ones realize that when you're often trapped in what feels like a cage of brick walls, you have to learn to charge through somewhat blindly, sometimes running over things in your way. And, the best gift our loved ones can give us, is to fight for their dreams too, even while we struggle to keep up. The best inspiration for us to keep fighting to live, is knowing without-a-doubt that your lives wouldn't be any better if we were gone.
Makes me wonder what being a psychopathic CF'er might feel like.
Anyways, so I've been down today (wikipedia on guilt: It is often associated with anxiety, and sometimes depression) and have been analyzing it to a point of finding a common theme. You guessed it: Guilt.
I feel like the hardest parts of having CF, and especially having "end-stage" CF, is this exactly. Here is my more-than-likely-unfinished list of potential CF guilty feelings:
-the guilt one feels when reflecting on past non-compliant days (ie. not doing physio as a teen, not being brave enough to endure a first hospital admission as soon as it was needed) **this one can connect to several of the others such as the next....
-guilt for causing parents heartache your entire life despite not always knowing it, but more and more as you get older and closer to statistical life expectancy, as well as the more you realize the love of a parent for their child
-guilt for your grandparents, who are ailing themselves and don't know how sick you really are and who you pray you outlive to save them the pain
-guilt towards parents who are dealing with their ailing parents at the same time as worrying about you
-guilt for being the more doted-on sibling growing up
-guilt for not being able to stay out as long with, do the same activities as, or make it out at all with your friends (who may or may not understand why fully)
-guilt for being a not-so-prime mate for your partner who you suckered into loving you
-even more guilt as the years pass and you've finally accepted that your mate loves you for who you are, however now you are a "new" sick person and much worse and more of a burden that they didnt "sign on for" initially
-guilt towards any child who helplessly began loving you as soon as you started dating their uncle, and doesn't understand at 6 years old why you can't be as fun as the other adults in his life. And who risks losing their live-in aunt at a young age
-guilt that you're even thinking of being a parent after feeling guilty about the above
-I even feel guilt towards the people I get angry at.. sometimes strangers, sometimes family, who don't make the best use of their healthy lungs and lives. For when I'm rolling my eyes inside at someone who is complaining about something trivial, or who is making a big deal out of something frivolous..
-and perhaps, though i haven't got there yet, survivors guilt towards : your donor, other CF'ers who didn't make it as long, and the guilt you feel if you "waste" a day with your new lungs by lounging on the couch
It's alot, and though it rarely all hits at once, when it does it's hard. And you remember that you must go on with your current moment, and look after yourself right NOW, because that's all you can do. But its SO much easier said than done.
I also think that when you're working through these feelings (every, say... 2-3 days it seems for me and most often when I'm feeling worst) you tend to talk yourself out of the rut by reminding yourself that you are worth everything just like everyone else, and you deserve your own dreams and wants. Only, when you most need to 'get' this, it sounds alot more like a sesame street skit than the truth.
For me, when I'm in the middle of convincing myself I deserve my own dreams, I think it comes off selfish and incredibly strong willed, and maybe even bull-headed. I compensate for my weak feelings by getting strong and letting no one stop me. Frustration is enhanced when I can't get what I want. I swear a huge chunk of us CF'ers are like this. I just hope our loved ones realize that when you're often trapped in what feels like a cage of brick walls, you have to learn to charge through somewhat blindly, sometimes running over things in your way. And, the best gift our loved ones can give us, is to fight for their dreams too, even while we struggle to keep up. The best inspiration for us to keep fighting to live, is knowing without-a-doubt that your lives wouldn't be any better if we were gone.
Subscribe to:
Posts (Atom)