The weather here in Pennsylvania has been weird the past few days. It’s been unseasonably cool plus overcast. Even though my lungs were glued to my chest wall over 10 years ago, I still get sensitive with weird weather cycles. It affects my breathing for sure, but I actually feel it in my chest too. It also usually means more pain. Which it did definitely today.
It’s 57 degrees today, the humidity is at 58 percent, but it looks like a front is moving through. Pressure is steady but it just feels like something is building. So nothing super telling but something just feels off.
I tried to exercise but could only manage a little under 20 minutes. My last 3 minutes of rowing I started bouncing around a bit lower than normal. I then tried to move to the exercise bike after a break, to no avail. I did about 3 minutes and had to bag it. My levels were not maintaining as well.
Will have to see how it goes next week. If it continues I’ll have to report it to my doctor & see what he thinks.
I hope it’s not a trend because then it might mean I need to start going back to tanks for exercise…but I will deal with it if that proves out to be the case…
It doesn’t feel like the cysts popping like I had on Monday but there’s a tightness.
I feel that too. People get intrigued when I tell them I can actually feel a popping sensation. It usually means intense but intermittent pain spikes. Sometimes it’s almost like the pinches like I’d get with the lung collapses. The only difference is when my lung would collapse, the pain was pretty constant. It wouldn’t go away. This fires off for about a half hour at a time or so, then lets up, then maybe comes back or doesn’t.
But having dealt with LAM for 12 years, I have my body sensations down to a T.
I’ve increased my exercising to 4 days a week within the last month over just the required 3 for listing because I notice my breathing is better that way, but I’m not going to beat myself up if there’s a shorter session every now & then.
It took me awhile but I found a good pace & feel for what I can do & at what intervals.
I’m building some strength even in spite of getting weaker physically.
It’s not translating in my numbers but I know post surgery it will help me too.
Days like this it’s just tough because I also feel the physical drain in combination with the weather weirdness & it can get to be a bit much. I tend to drain much more quickly of energy.
I didn’t share my numbers but overall last April I was at 33 percent of my lungs left when I started using oxygen. I am now at about 23 percent left.
I’m used to these drops as these were the types of annual drops before I had treatment with Rapamune, but I just feel them all the more intensely at this level. Before I stopped the Rapamune in preparing for transplant, I was still having drops. I just think it’s a point or two more now each time than what it was before I stopped the drug (which is also frustrating but not unexpected).
It just makes everything that much harder to do.
I am not one to complain or give up but I am one to acknowledge realities. Some days are really hard on me physically to just breathe.
But this is why I keep fighting back with my exercising regardless of how I feel on any given day or week. It’s about the only thing I have left to fight with.
I feel stronger even if it’s not showing on paper in the midst of such decline. Five days a week wears me out too much, but I find 4 days a week, (three during the week and once on the weekend) really helps me breathe better & allows adequate rest for my body. On weeks I do less (which is only if there’s a lot of doc appointments) I feel noticeably weaker.
The rowing is a good all over body exercise that works everything for me but is not as physically demanding & taxing as the treadmill. I stay more level with my oxygen. Plus my noodle body seems to like it. I work but I’m not utterly exhausted after I finish & I can go for a half hour versus only about 20 minutes or so on the treadmill.
I put on my wireless headphones to whatever I feel like listening to & it’s almost meditative. I’ve actually built resistance since I started too which is great. It’s helped my posture. My body seems to automatically try to correct now when I try to hunch over or slouch.
That also makes me feel good because my lungs may be functioning like a person much older, but my body seems to be responding better to the physical decline taking place.
I luckily was able to go out to an improv show on Thursday night and see a good many of my friends. It did my heart good to be able to feel up to that. I intend to try to do more of that as I can & am able while I wait.
My attention (bit by bit) is coming back so hopefully soon I’ll start writing again.
I’m finding that balance even on the not-so-hot days.
It’s encouraging that I am because I know there will be days post transplant that will be far from easy.
I just look at these days as mental preparation & mental toughness training.