♦Time, before and after.

♦ How I will make the most of it ♦ And how it will make the most of me.♦


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First Post is "Time" January 11th, 2012

SOB = short of breath


Friday, March 2, 2012

Showers and Surges

Castle Geyser in a steam phase

I have now sunk another step. The shower. I now need oxygen for a shower. Well, it is not that I require oxygen, but I have found that if I want a comfortable shower, I had better climb into the stall with the hose on, or it becomes very uncomfortable very quickly.

The warmer the water is, the more steam there is. The more steam there is, the more moisture gets inhaled into the lungs and let me tell you, when a person is not getting good airflow a little moisture is definitely not going to help any.

The same thing happens when we go outside into the frozen air. To have icy cold air get sucked into the lungs, like with asthma, the lungs do not relish the treatment we give them, and with asthma sometimes they rebel with an immediate clench, as an asthma attack.

Since I am not the type that has immediate asthma attacks unless I have inhaled noxious fumes from stuff like naphtha (spot remover), I don’t usually recoil. My attacks seem to come on in a more gradual way, none the less, they still arrive with regularity when I change atmospheres too suddenly especially when there is a wide degree of temperature change.

Well, in the shower it happens too. I have known this for a long time and in the recent year or so, it has become much more apparent and I must be very careful.

I had not had a good shower in a very long time. It seems that the moment I get into the shower my strength starts to wash down my body and start seeping down the drain under my feet. Washing my hair using my arms especially up over my head zaps me faster than anything else, and it feels like I need to get done as soon as possible and just get out so that I can sit down to recollect my breath.

My shower has the little benchy thing, though it is covered by a myriad of bottles and little jars of shampoos and conditioners in about 14 different flavors, brands, types and scents, and this is a humorous thing since there are only two of us using this shower and one of us doesn’t even have his shampoo on the benchy thing anyway. But even if all of those bottles were not on the benchy thing, sitting on it while the water is flowing really doesn’t offer me any relief. The water at that level (when sitting) then hits me in the face and the temperature would be the same anyway.

So here I am, attempting to sit on the benchy thing, bottles spread apart threatening to scatter this way and that way. I find that most of them are half empty, and why I don’t throw them away, I cannot say. Perhaps I have separation anxiety. Perhaps I know (inside) that if I do throw them away, I will have given in to the benchy thing and will now have to face my disability once again, because as soon as I clear even 1 square inch, I replace it with something new.

Unfortunately, my most recent bottle of shampoo is a rectangle that sits on its flat side with the pump on top so that just doesn’t work down there on the benchy thing, so it ends up on the ledgy thing that looks like it is supposed to hold a bar of soap except that if one tries to put a bar of soap on it the bar inevitably slides right off, slithering down to the benchy thing then onward to the floor of the shower inevitably denting a corner up. And there nothing worse than a dented bar of soap. They just don’t work right when they’re dented.

My shower even has the “hold yourself upright in the shower” bar, made for those that have had a little too much to drink or for when their mom is borrowing the shower… which in itself is a weird concept, though I will admit to having it happen before in my bathroom.

I have had to resort to holding that bar, but not to keep myself upright, more like to give myself a place to hold onto while I lock my elbows so that I can stand in the stream of water without having to support all of my weight. When I am short of breath just holding my own weight up can be taxing on my ability to breath.

So I attempt to give myself some relief while the water tries to drown me with its intermittent droplets of torture and steam attack.

I used to love getting into the shower where I go into my make believe world; a place where I could be without everyone in the household constantly asking me questions or making requests, even if my reprieve would only last for several minutes, it would seem like an hour to myself. And when everyone was gone from the household I could sing at the top of my lungs and not care whether anyone walking by out at the sidewalk at street level could hear me. And I could cry and no one would be the wiser. Try that anywhere but in the shower and someone will always inquire as to what is bothering you.

In the shower the eyes can get red, a person can cry, (as long as they’re not wailing too loud they can pass it off as singing) and blame the red eyes on shampoos getting in them. And if I had the freedom of time on my hands, I would love to stand in the water after finishing all the usual things we wash and condition and just allow the water to run on me and then place myself in a masochistic state as I would slowly raise the temperature one increment at a time until I could almost stand it no longer. Only then would I emerge from the shower all red and radiating. There was a time when I would leisurely dry off and then walk throughout the house nake…oh never mind.

Until I started taking my air into the shower, I would get in and immediately get short winded but I could deal with that as long as I didn’t move. Of course, it’s hard to shower without moving. My first course of events has always been to wash my hair and it is a hard habit to break. But raising my arms is the hardest thing on my lungs, and that would be where the hand rail would come in.

I would have to hold it as though I was using a walker just to try to allow myself to relax, and let my heart beat drop, something difficult to do when a person’s body is reacting all on its own to hot water and even worse, steam. There have been several times when I have actually stepped out of the shower dripping wet just to sit on the commode to catch my breath…. And then I start to shiver. Oh, did I mention that any sudden shift in temperature can fire up the systems to cause a shortness of breath? I’m damned if I do, and damned if I don’t.

As a hairdresser, I was always seeking the perfect combination of hair products. But not anymore, no not anymore. Now, not only do I use whatever is in there, I could care less how it makes my hair feel. I wash my hair as quickly and easily as I can and get the heck out of the shower.

There is no time spent drying myself anymore. So soft towels slowly moving over my skin, no time spent covering myself in emollients to keep my skin soft. No, I have no breath to do that anymore. Now I step from the shower directly into my faux terry cloth robe and tie it at my waist, and immediately walk out of the shower and into the cool bedroom where I can immediately sit on the edge of the bed to collect myself and drip dry inside the robe.

I only spend enough time wrapping my hair in a towel anymore and I am already short of breath, because even with the air on I still get short of breath. I usually return to the bathroom after I have regained my breath, and it is on that trip that I use the deodorant, comb out my hair and if I still have my wits about me I might even use some cream on my skin. A far cry from what my method was just 3 years ago. Back then, I would disappear into the bathroom for a shower only to emerge 45 min later all made up and ready for the blow dryer. Not anymore, no, not anymore.

I found out about the air in the shower one day, when I was talking to other COPD people at the gym and one mentioned the hose in the shower. “Really?” I said. I thought about it. Some of these people are in need of O2 24/7, so how were they managing the shower?

I found out that there is virtually no reason not to take the hose in with me…. Yea, why not? The worst thing that might happen is that water might run backwards down the outside of the hose and puddle on the floor. Heck, that happens on its own if I don’t have the door completely sealed off, so I tried it.


I had my shower back. Well, at least I had it back to about 2 years ago. But that was fantastic! It felt so good to have the ability to breathe again in the shower. I can wash my hair at my leisure now. I still run short of air, but it is not like I am drowning anymore! I am so happy!

I can wash my face and actually put it directly into the shower stream to rinse it again. I haven’t been able to do that for over a year. I mean who in their right mind would put their face into water when they cannot breathe? It becomes a vertical water boarding immediately. And the worse thing is, I would need to leave it in the water long enough to rinse the suds off. When I can’t breathe, and can’t get air, there is no exhaling or holding the breath, so it is immediate body panic, an automatic thing…the innerspeak I wrote about in the past becomes an InnerScream, a screaming of my own voice in my head, ironic, since I would not even have a voice if I tried to actually scream at that point.


Luckily the InnerScreaming stops as fast as it starts once my head is withdrawn from the water stream.

Now that I have my hose in the shower with me I can actually put my face in the water again. Of course I do have this “thing” on my face, so lathering has its hinderance, but that’s OK and I will put up with it. I can always wash my face in the sink without my cannula on if necessary. And oddly, I can still neti – pot, but it’s probably because I am bent all the way over on my elbows and leaning on the sink.

Did I mention that I have not brushed my teeth in a standing position in years? I am always on my elbows at the sink. Even on a good day, I can start standing, but with my 3 min timer on my Sonicare, I can last about 2 min before I need to sink down to elbow level to achieve solace.

My elbows have turned colors over the years. They now have what appears to be purple bruises on them. This is from always leaning forward on them. I sit in a tripod position most of the time. This happens from sitting off the front edge of a chair or the sofa just to keep my airway open and as straight as possible. My legs above my knees also have dents worn into them from my elbows always being there. There is no slouching back anymore, and for a while before I got my oxygen, there would be times when I would be so short winded especially when trying to reach my car, that I would have to sit down and almost arch my back in the car’s seat just to try to achieve that same angle so that I might catch my breath, since leaning forward on my knees is impossible in the car.. It would remind me of the folks that have to live in a chair and have a rod in their back to keep their spines straight and not allow the natural scoliosis curving that takes place when they are in a chair 24/7. I felt like I had a rod in my back just so I could catch my breath. Not anymore though, not since I got my O2.

Things happen to a body that continually goes through these motions. One has to have bladder protection, because when you cannot breathe and get to the point where it feels you will pass out if you keep on going….guess what also happens?

And if you are just trying to get the groceries from the car into the house… well things can happen.

For me, I can always get there, but it is like a surge that comes over me after-the-fact. I can make it to my front door arms laden, with multiple grocery bags, but after I get inside the house and set things down on my counter, that is when my body then catches up with me, because I have been operating on borrowed time, on auto pilot. Pushing the limits of my body just to function as I should normally operate, I must lean on the counter and immediately do Kegel exercises. Sometimes is works and sometimes it doesn’t. At times, I have been known to make it into the house and then into the bathroom before the surge sets in. I can be on the john when the surge hits, and by surge I do not mean what you think I am referring to.

The “surge” is my body reacting to a loss of oxygen, in that even though I am in a sitting position, my body thinks I am still pushing the envelope, and the inner speak starts up as though I have reached the end of my rope, and am dangling there ready to drop off. But because I lived through the 60’s and the 70’s and survived various forms of paranoia, these surges that rack me when I am in the bathroom in the darkness, do not allow me to panic as they might some one else. I can get air, I feel the air moving in and out, but I cannot relieve my own pain. I must wait for my body to do it for me. Of course, I have always survived. Each time, as long as I relax and wait, my bearings return and then I can go out and put my groceries away. When I mention being in the dark, it is because I am …in the dark, with just a crack of light coming from under the door.

When I am experiencing this, the very last thing on my mind is the light switch and because it is an internal bathroom there is not light unless the switch is flipped when I enter the room. And so far, I have never flipped it when I am in this condition. And this tells me just how dire my situation seems when I am surging like this. It’s freakin’ sad.

But I do survive.

In fact if I am in public I will refuse to do something that I know will cause this surge, something like a long flight of stairs, or to walk up a hill for example. To this day, I have never passed out. Never. And if I did pass out, I am pretty sure that I would just start breathing on my own because that is my nature, I stop moving and my O2 stats immediately start to rise back up.

I have never seen stars and I have never seen my fingernails or lips blue either, so I know I am not blacking out as another person might do, and as I might do had I complete loss of oxygen and turn blue. So far, I have never needed hospitalization from an illness. Many of my friends cannot say this.

So I go on day after day, sometimes swinging from the end of my rope.

But I do know one thing. I cannot converse when I am like this, I cannot discuss, nor communicate other than by looking into eyes and maybe a head shake. I have likened it to labor pains when one is in transition. When I am like this I am in the throes of a huge bodily labor pain that sweeps my attention to the innerspeak within and as it wanes I can feel my abilities coming back. Just like a labor pain. It’s all an event of natural timing.

Freakin’ sad.