And all there really is to combat anxiety of illness, is action. It's what I've come down to. A powerful, and frustratingly late lesson. Even when it doesn't work, action is soothing and gives you a sense of control that is so desperately needed.
4 or 5 mornings ago I woke up with the worst foggy/painful-head. I occasionally wake up with headaches, but its very occasional and I assumed that when it was time for me to offcially wear oxygen at night, they would be constant. I decided 5 days ago that it would not hurt to try sleeping with my o2 at a low flow rate to see how it goes. One of the (many) things holding me back was worrying about how loud the concentrator was, and its effect on my, but particularly my husbands sleep. We thought of putting it in the kitchen and winding the tubing to our room. Worked well. When I woke up after that night, I felt a clear head. It wasn't a lack of pain that was striking, but the clarity. I immediately thought this was probably pretty overdue.. Its frustrating how subtle it comes on though. For those of us who drift down in lung function with few exaccerbations and admissions, its really hard to catch the moment of change. Nevertheless, I even feel that some of the anxiety symptoms I was getting in the daytime have been lessened by this... I will have to bring it up at clinic.
Another change I've made recently is being committed to doing more physio. My 3 years of consistent one-a-day physio has had its run, and its time to up my game. Recall that I did very very little physio for all of my teen years/young adulthood. Close to none, in fact. I finally realized, after many attempts at a second physio with my flutter, that maybe if I did percussion, I would be more compliant. Lets face it, percussion is easier. When you stick a tool in your mouth and exercise directly from the organ that is dying on you, it's very wearing. I was always known to make things harder than they needed to be.
So, I decided to bring back the percussor into my life. I had one last when I was maybe 8 or 10. I ended up getting the Eper500 2 weeks ago. I went through hospital channels and therefore did not actually choose my percussor but its kind of nice that I know the family who created this one have a daughter with CF and therefore understand the whole process, lifestyle, challenges, etc.
I wish I could coach noncompliant teens like myself through CF. Actually, I never even considered myself noncompliant. . I really just trusted that I was going to be okay, despite what the numbers were saying. I mean, when you feel like crap, often you don't realize it until you are made to feel better and can see the difference. My first admission went like that, and was the first step on the road to my changing. A step I fought for years. I swear if I can get through this leg of my journey and come out the other side I will help as many CF'ers as I can to see everything as it really is. There is too much at stake to wait to learn.
Thursday, December 30, 2010
Thursday, December 23, 2010
Assessment, Anxiety & Christmas
I've written 1 or 2 new blogposts since my last. I can't seem to finish them. These spells of iv's followed by crashing right back down to where I was pre-ivs are taking their toll on me. I think I would do better to not go in at all. There was a time when I would think/say that simply because I didn't like the hassle. I can handle all of the hassle now. All of it. Even missing my hubby, as hard as it is.. for the greater good to have ultimately more time with him.. I can do it. But thats just not how it works. I seem to only lose time.
To top it off, having the completion of my assessment looming is becoming harder than I anticipated. I was and am looking forward to having it "complete". I will rest easier knowing that if I have a quick downfall I can be listed quickly. What disturbs me, though.. is going into this lower than I had expected and hoped. I'm scared they are going to want me listed now. I'm scared of how everyone, and especially I, would deal with that. I'm sure all of this is very common, and I know its eventual.. but I just don't know how I'll get by with the whole process of waiting, or, conversely... If I get to wait, and then get super super sick like some of my friends have suddenly.. I don't know how I'll deal with THAT.. I really don't know which option I'd rather have...And that is the bottom line of how I feel. Trapped between two terrible options.
Anyone who's had anxiety issues knows its hard. But I think the ultimate is having anxiety about being sick, when you ARE sick.. thats frustrating. I've always been logical and scientific in my thought processes, and when I'm feeling short of breath, or my hearts racing, or i feel weak or want to faint.. i can't separate CF from fear. The only clear scientific evidence I have is that these feelings occur more outside of my home than inside. They do happen here, just way less. Which proves at least 50% of it is in my head. I've officially decided to plead my case to my doctor and see what she can offer me. I only hope I am not treated like a crazy person, or someone who is "sad" or "depressed". I LOVE my life.. In fact, I love it so much, it breaks my heart that I'm losing it piece by piece.. and SCARES me.. Its all fear here, and its all about CF. I really hope theres something really good that can be done.
Finally, with all this going on in my head, we've got Christmas. The most magical and most stressful holiday of them all. Some of my worst skills are exercised at this time of year. Buying people meaningful gifts (on time), going out in crowds, bridging the gap between families and having little nit picky fights about things that really shouldn't matter. I'm praying the best will overshadow the hard this Christmas season.. I have tons to be grateful for, tons to look forward to, and a beautiful family to share it all with. I just have to focus on that, and that alone.
To top it off, having the completion of my assessment looming is becoming harder than I anticipated. I was and am looking forward to having it "complete". I will rest easier knowing that if I have a quick downfall I can be listed quickly. What disturbs me, though.. is going into this lower than I had expected and hoped. I'm scared they are going to want me listed now. I'm scared of how everyone, and especially I, would deal with that. I'm sure all of this is very common, and I know its eventual.. but I just don't know how I'll get by with the whole process of waiting, or, conversely... If I get to wait, and then get super super sick like some of my friends have suddenly.. I don't know how I'll deal with THAT.. I really don't know which option I'd rather have...And that is the bottom line of how I feel. Trapped between two terrible options.
Anyone who's had anxiety issues knows its hard. But I think the ultimate is having anxiety about being sick, when you ARE sick.. thats frustrating. I've always been logical and scientific in my thought processes, and when I'm feeling short of breath, or my hearts racing, or i feel weak or want to faint.. i can't separate CF from fear. The only clear scientific evidence I have is that these feelings occur more outside of my home than inside. They do happen here, just way less. Which proves at least 50% of it is in my head. I've officially decided to plead my case to my doctor and see what she can offer me. I only hope I am not treated like a crazy person, or someone who is "sad" or "depressed". I LOVE my life.. In fact, I love it so much, it breaks my heart that I'm losing it piece by piece.. and SCARES me.. Its all fear here, and its all about CF. I really hope theres something really good that can be done.
Finally, with all this going on in my head, we've got Christmas. The most magical and most stressful holiday of them all. Some of my worst skills are exercised at this time of year. Buying people meaningful gifts (on time), going out in crowds, bridging the gap between families and having little nit picky fights about things that really shouldn't matter. I'm praying the best will overshadow the hard this Christmas season.. I have tons to be grateful for, tons to look forward to, and a beautiful family to share it all with. I just have to focus on that, and that alone.
Thursday, December 2, 2010
When Exercise doesn't help
Clinic was horrible. Back down to 23%. I seem to have a new routine. Last year, in the summer, I dropped 80 mL. This resulted in an October admission, which brought me back. Followup for that admission showed me back down 80 mL. Here we are one year later, same timeframe, same drop, same admission, same followup. One difference, however. This time, I took action in between.
My physiotherapist started me doing 20 mins of bike every day in the hospital right before physio. She said it has shown to have a mucolytic effect, and helps physio be more productive. We found, since we started it halfway into my admission, that this proved true. I went home, and started biking 20 mins a day on my home bike. Soon after, we went out and dropped $500 on a brand new, Schwinn recumbant bike, thinking the cost of it will be more than worth it for all the benefit we'll both get.
I'm not saying the bike did absolutely nothing. Far from it. I'm sure my heart and other muscles are more toned now than they were 5 weeks ago. However, I kinda had a tiny hope that this might help my lung function stay where it was when I left the hospital. Even CLOSE to it. No such luck. Its pointing scarily towards permanent damage, which of course is inevitable but I can't help but be awed at how infrequently I seem to be infected and yet how I drop this way. Even on admission, my white count was 11.96, and 10 is acceptable to them. I have friends who come in at 18. I don't know.. I just don't get it.. and if I dont manage the bike tonight, it will be 3 consecutive days not doing it.. I am determined to not give up, but sometimes i think 'man, throw me a bone, universe!'.
My physiotherapist started me doing 20 mins of bike every day in the hospital right before physio. She said it has shown to have a mucolytic effect, and helps physio be more productive. We found, since we started it halfway into my admission, that this proved true. I went home, and started biking 20 mins a day on my home bike. Soon after, we went out and dropped $500 on a brand new, Schwinn recumbant bike, thinking the cost of it will be more than worth it for all the benefit we'll both get.
I'm not saying the bike did absolutely nothing. Far from it. I'm sure my heart and other muscles are more toned now than they were 5 weeks ago. However, I kinda had a tiny hope that this might help my lung function stay where it was when I left the hospital. Even CLOSE to it. No such luck. Its pointing scarily towards permanent damage, which of course is inevitable but I can't help but be awed at how infrequently I seem to be infected and yet how I drop this way. Even on admission, my white count was 11.96, and 10 is acceptable to them. I have friends who come in at 18. I don't know.. I just don't get it.. and if I dont manage the bike tonight, it will be 3 consecutive days not doing it.. I am determined to not give up, but sometimes i think 'man, throw me a bone, universe!'.
Sunday, November 21, 2010
Ripped off
At what point did I say that CF could control me in my DREAMS too?? You know how when people see a deceased loved one in their dreams, they are always ailment-free and the dreamer tends to put a lot of weight on this fact? My gentle argument for that has always been, "well... even I myself do not have CF in my dreams.. and you would think since thats all I know, my mind would make it happen". Well apparently I'm crossing a bridge regarding this, and its kind of fascinating.
I analyze it as being a result of CF taking me over more than it used to. Sure I used to get short of breath if I walked up a big hill or took 6 flights of stairs. Sure I coughed at any episode of laughing or arguing. But at the end of the day, thats minor compared to what goes on now. And I should also mention, that what "goes on now" has being going on for a hearty year or so at least. I think my mind had to adjust to being used to it, and now its dream-incorporated. It fully sucks.
Last nights dream was about shopping in a gigantic mall with I'm-not-even-sure-who. Clearly I really DID have to pee because in the dream I was needing a washroom, and decided to split off quickly from my group to find one. I went down a familiar hallway (I mean, like, genuinely familiar to my conscious mind--I still don't know from where) and it turned out to be ALOT farther than anticipated. In the dream I speed-walked towards this distant bathroom, huffing and puffing the whole way and taking breaks. Worrying about my lost companions.
Screw you, brain. I sought comfort in the 4-8 hours of uninterupted NO CF that I used to get. Thanks.
Just to finish off, to address my initial point... In a way this new revelation of having CF in at least 50% of my dreams could mean that everyones feelings about deceased loved ones 'visiting' in dreams could be true? I don't know, and I think I prefer it that way. Anything is possible.
I analyze it as being a result of CF taking me over more than it used to. Sure I used to get short of breath if I walked up a big hill or took 6 flights of stairs. Sure I coughed at any episode of laughing or arguing. But at the end of the day, thats minor compared to what goes on now. And I should also mention, that what "goes on now" has being going on for a hearty year or so at least. I think my mind had to adjust to being used to it, and now its dream-incorporated. It fully sucks.
Last nights dream was about shopping in a gigantic mall with I'm-not-even-sure-who. Clearly I really DID have to pee because in the dream I was needing a washroom, and decided to split off quickly from my group to find one. I went down a familiar hallway (I mean, like, genuinely familiar to my conscious mind--I still don't know from where) and it turned out to be ALOT farther than anticipated. In the dream I speed-walked towards this distant bathroom, huffing and puffing the whole way and taking breaks. Worrying about my lost companions.
Screw you, brain. I sought comfort in the 4-8 hours of uninterupted NO CF that I used to get. Thanks.
Just to finish off, to address my initial point... In a way this new revelation of having CF in at least 50% of my dreams could mean that everyones feelings about deceased loved ones 'visiting' in dreams could be true? I don't know, and I think I prefer it that way. Anything is possible.
Monday, November 8, 2010
Ignore the contest(s)
Sorry about that contest posting. Its a big hobby of mine to enter any and all contests and for that particular one, I gained points for posting on my blog so I figured I'd sell out and do it. I've managed to win 4 since I started doing this around June so its going pretty well. Just waiting for that big one!
In other news, I'm settled into home now and feeling pretty average, which I guess is better than nothing! Kickstarting a bike routine again, as well as extra physio when I can manage it. Planning on getting a percussor to help with that one. I hope that the effort of holding the percussor to my chest early in the day is less than what it seems to be to use my flutter at that time. I'm pretty lazy and tired in the morning and using the flutter just doesn't sit well in the morning. I'm told that at my lung function doing physio just once a day won't suffice, so I'm trying to fit it in in the most seamless way.
Not really in a writing mood right now, so thats it!
In other news, I'm settled into home now and feeling pretty average, which I guess is better than nothing! Kickstarting a bike routine again, as well as extra physio when I can manage it. Planning on getting a percussor to help with that one. I hope that the effort of holding the percussor to my chest early in the day is less than what it seems to be to use my flutter at that time. I'm pretty lazy and tired in the morning and using the flutter just doesn't sit well in the morning. I'm told that at my lung function doing physio just once a day won't suffice, so I'm trying to fit it in in the most seamless way.
Not really in a writing mood right now, so thats it!
Friday, November 5, 2010
Tuesday, November 2, 2010
Getting out
I have no idea where I left you all and I don't have the desire to check. I have a feeling it was something about being unsure of my progress here. Well.. that turned out to be a lengthy and pointless story. I still don't feel any different from when I arrived really, however my pfts were semi-better. Semi in the sense that my first blow was up 100mL but subsequent blows were the same as clinic. I'm over it, I'll get it back another way believe me.
As for everything else, my bloodwork has barely budged but I'm getting constant cries of "its normal" from everyone from docs to nurses to whoever I want to complain to. 9.85. Yes.. normal, but when I come here it typically plummets like a rock. I have a sore throat that won't quit. It took me 5 days to succeed in getting a swab taken, but nothing grew. They considered thrush (which i didnt think it was, but was excited to try ANY remedy) but decided against treating it. I coughed up a big, thick green glob Wednesday and then asked to provide my first sputum sample of my admission because of it (they had missed asking for one upon arrival). This green globby grew... wait for it... NOTHING. "Normal respiratory flora". When my 2nd worst type of phlegm can grow the best result... I'm not sure what to base my decisions on anymore.
The phlegm thing was my last straw. The doctors wanted to send me home after 10 days, and at that point I said 'fine.. I'll go home but I want to stay the 14". At the end of the day, I do realize I came here mainly complaining of a low pft.. which was, relatively, a small drop when you look at the big picture. Large for me though, but I felt fine. I know I'm not THAT sick. I got my tune up and hopefully its enough to maintain me on the outside world for another year. Exercise will have to keep my pfts elevated for now. I have a plan to get going on that once again and we'll see how that continues.
Until hometime I'm focusing my energy on making the most of whats left. I had a masseur come in today which was a cool experience. A few CF friends have lent me their spouses as visitors and for that I'm so grateful. Theres always part of being admitted that is... admittedly.. fun!
As for everything else, my bloodwork has barely budged but I'm getting constant cries of "its normal" from everyone from docs to nurses to whoever I want to complain to. 9.85. Yes.. normal, but when I come here it typically plummets like a rock. I have a sore throat that won't quit. It took me 5 days to succeed in getting a swab taken, but nothing grew. They considered thrush (which i didnt think it was, but was excited to try ANY remedy) but decided against treating it. I coughed up a big, thick green glob Wednesday and then asked to provide my first sputum sample of my admission because of it (they had missed asking for one upon arrival). This green globby grew... wait for it... NOTHING. "Normal respiratory flora". When my 2nd worst type of phlegm can grow the best result... I'm not sure what to base my decisions on anymore.
The phlegm thing was my last straw. The doctors wanted to send me home after 10 days, and at that point I said 'fine.. I'll go home but I want to stay the 14". At the end of the day, I do realize I came here mainly complaining of a low pft.. which was, relatively, a small drop when you look at the big picture. Large for me though, but I felt fine. I know I'm not THAT sick. I got my tune up and hopefully its enough to maintain me on the outside world for another year. Exercise will have to keep my pfts elevated for now. I have a plan to get going on that once again and we'll see how that continues.
Until hometime I'm focusing my energy on making the most of whats left. I had a masseur come in today which was a cool experience. A few CF friends have lent me their spouses as visitors and for that I'm so grateful. Theres always part of being admitted that is... admittedly.. fun!
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