Sleep – I’d love some

Sleep Pattern ending 31JUL17

The graph is Coach Fittie’s way of communicating with me about what I’m doing with regard to my sleep “bank”.

The daily summary, though, is also helpful for seeing how I allocate my sleep from one day to the next, in trying to keep up despite almost constant exhaustion from COPD.

This past weekend was really busy, with Friday including time to get errands done and load the car with the show booth properties.  [Having the toilet clog on Friday added an extra bonus to my schedule, but I managed to get it all unclogged (and am doing more unclogging maintenance today), so that this won’t be a gift that keeps on giving].  Ain’t nobody got time for that !

Meanwhile, Friday night into Saturday, I only got 4.5 hours of sleep before departing for the show on Saturday morning.

After doing more than 12k steps on Saturday, and some minor verbal skirmishing with my business partner, V, who was also in a lot of pain and not taking breaks, we got through the show without killing each other, which is always a good thing.

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It is so hard to believe how much work goes into making a show booth look “effortless” as we try and both draw attention with limited flashiness, as well as look elegant despite the makeshift solutions.  I had to laugh, though, as I was proven right in my advice.  My business partner, V, insists on using flashiness on the top layer of the display tables, and it completely overwhelms her designs.

(I haven’t yet emptied the camera, or I’d show you what I mean).

We did have a customer walk up and tell her those exact same words about 10 minutes after I’d brought it up (yay, it wasn’t my big mouth for a change).  The customer informed V that her designs were wonderful but completely overwhelmed by the glittery cloth in the sunlight.  She suggested a simple black velvet.  While V is not having any of it, (the muted top cloth), I’m going to pick up some later this week and see if V will agree to using it during the Santa Cruz show if the glare from the sun is too much once again.

Meanwhile, after sleeping my head off for most of yesterday, to the point where I achieved credit for eight (8) whole hours (yes!), and was also able to get in an hour’s swim despite my tiredness.  Today, I’m jittery enough from the Xopenex I took this morning that I’m now ready to drive to Merced and back to check on a friend who has no phone, so I can’t reschedule.  The one good thing about Xopenex and my nerves, though, is that I feel I could drive to the moon and back right now – it’s equal to a couple dozen espressos for being overstimulated !

Since I can’t exactly reschedule the visit for someone without access to a phone,  I’m glad I found energy from somewhere.

And, I’m glad that V won’t be in the car today, so that I can pull over and nap if I must (something that cannot be accomplished with an audience).

I’m hopeful that V will figure out how to manage her health pain (she’s really suffered yesterday and today, because she wouldn’t slow down on Saturday), as next weekend is a two-day event, and we are both going to need all the patience we have in order to be able to do this show without killing each other before it’s over.

I’m all for trying new venues, but not if it causes hassles between the two of us.  Hopefully, she’ll find her rhythm so that she won’t get depressed and insist that we do indoor shows only.  (Those are so much less profitable).

Meanwhile, I hope whatever you’re doing today, you’re feeling fine and enjoying the Summer weather while we have it.

Giving In…

is never my first choice, as I detailed in a post two years ago:

Refusing to Hide

For this morning, my “whispy”ness continues, and I have finally given in and taken a hit off the old Xopenex inhaler, leaving my nerves jangled, and my stomach begging for breakfast.

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B45028_M7259-pr.pdfSuch a tiny device to cause such difficulties.  Trust me, I don’t push myself to the point of having to use it, but rather use it as a preventative (so that I can get things done), or as a fixative (after doing too much, usually over the next day or two).

I so love the side effects:

Xopenex Side Effects as it makes me have to eat to calm the wobblieness and shakes, and that sets off the diabetes.  Oh, and the bonus round for adding to my inability to sleep is amazing !

Pulling her hair out.

 

 

 

 

 

The last thing you want after a day of shakiness and exhaustion, is to be kept up all night with an inability to actually sleep.

For today, though, it will give me enough energy to get to Merced and back, so it was worth it to be able to breathe.  Maybe.  Just for today, anyway.

 

Whispy

and the giggles.

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I am very tired from yesterday’s show.  Had a great time.  Only lost my temper / got short with V a few times (I’m trying to be patient, but everyone and everything is on my last nerve, which is adding to my aggravation).

The new tent went up smoothly.

We didn’t put up the side walls, and the wind was a hassle.

All and all, though, we got through the day.  V did plenty of sales.  I did more than I deserved since I was not at all ready and my products were disorganized.

It was a good day.

Today, however, the nagging congestion and scratchy sore throat are lingering, and my breathing is whispy.  Not enough to do anything to help it, but not “normal”, either.

I had to laugh, though, when I found the above picture among the  gallows humor postings from my COPD-afflicted friends.  At the end of the day, if we can laugh, we’re doing ok.

Mania.

I choose to fight

I am in the middle of yet another batch of useless paperwork for the insurance company.  They want me to explain my very existence, and why I “deserve” to receive matching salary benefits.

Having to justify my very existence creates a mania within me of highs and lows, self-doubts and anxiety, and anger.  Lots and lots of anger.

After 5 days of trying to explain my limitations, I have settled on the following answer.  The lawyer will say it’s too much, not enough, whatever.  But, I’ve gotten it done.

* * * * * * * * * * *

Hobbies / Outside Activities:

As my work history demonstrates, I used to work long hours at multiple jobs, with energy left over for necessary chores and a side crafting business. I began to notice that I tired much more easily after a work trip to China (August 2009), where aggravation of my underlying birth defect left me coughing up blood and crud from congestion during most of that trip. Following that trip, my breathing capacity and oxygen saturation began to drop. While I have always dealt with breathing difficulties and pain, now it is a daily nagging companion.

Due to my birth defects, I have always had trouble with enough stamina to lift things and move, or run. I used to be able to push through those episodes and risk being sick but still recover after a relatively short down time. Now, I tire much more easily. I can sleep whole days or weekends away. I need to schedule rest breaks. I need to space out my socializing with friends. I need to spend down time resting after a push to pass for normal and avoid others hovering and worrying.

When bowling, I have had to suck it up and ask for a “child’s ball” / explain I’m handicapped, as I just can’t lift and throw the weight of a normal adult bowling ball. I still travel and try and pass for normal, but I’m napping in my car or anywhere I am as I can be sick anywhere, as there are chairs and beds worldwide, but I will never get that particular moment back to live my life to its fullest potential before I run out of time, or my stamina and abilities decrease further.

As anyone does when struggling to live a healthy life, I’ve incorporated a variety of aids. My favorite exercise, swimming, has now become embarrassing. Like a child who doesn’t know how to swim, I’m now always wearing a float belt, as a lung or back spasm can strike at any time, leaving me floundering for air and at risk for drowning. Coaches want me to swim without the float belt as they are focused on tightening my core or some other nonsense, and it’s embarrassing to have to explain to strangers why the belt is there and why I’m not in a “special ed” swim class (they mostly don’t exist). When snorkeling, I use a snorkel designed to help people with lung problems avoid exacerbations and water inhalation, and I’m out of the water much sooner as I get sunburned and chilled much faster than I used to from lack of stamina as well as the photosensitivity of medicines that I take to remain healthy.

Being confronted with my health reality and having to talk about my change in abilities irritates the crap out of me. I know what abilities I no longer trust or have outright lost, like horseback riding. Still doing as much as I can when I can, but I run out of energy and patience with others well-meant intrusion, and usually need extra rest, which alarms them. I *hate* being helped and hovered over.

I know my own competitive nature is my biggest curse. The very thing that allowed me to work multiple jobs and succeed in the working world is a curse, too. I hate admitting I can’t do something or keep up, so I have to be careful when socializing to not push myself into feeling worse by trying to hide my exhaustion. When I was still working, I loved contributing goods and services to many worthy causes. I miss being able to contribute and help others. However, I learned my limitations during one of my “day of service” projects which involved weeding a hillside in South San Francisco. As a gardener, I thought we’d be driven / drive to the spot, and then weed. Surely, I could do that and have fun with my co-workers? Instead, we had to hike an hour, uphill, before we ever reached the weeding location, and I cannot / do not hike. However, I was there so I wasn’t quitting. I was humiliated to have it confirmed in front of others that I couldn’t keep up (October 2014). It was distracting for the organizers to worry about me, and it was a point of fury for me that my body was failing me. That event demonstrated to me that I was no longer safe or steady on my feet if I pushed myself while trying to keep up appearances. That event, plus multiple car accidents from pushing myself to keep up when tired, also pushed me to seek additional medical assistance from doctors to try and figure out if there was anything more that could be done to help me regain my stamina, fight brain fog, sleep well, and deal with my breathing frustrations (there wasn’t). That effort, however, ultimately lead to my COPD diagnosis being confirmed in black and white.

Mostly, I do much of what I used to do, just at a much slower pace and over a longer period of time. I often wake up, spend a couple of hours in the bathroom dealing with those daily morning issues, and then am freezing cold after being up for a few hours. I can get chilled on the hottest of days, which makes me very sleepy and forces me back to bed to try and warm up.

I *know* all of this, and concentrating on what I cannot do any longer leaves me in a state of angry mourning that isn’t healthy for my overall well-being, so I simply try to avoid thinking about my limitations.

I’ve now taken to wearing a fitbit to try and keep moving each day, as the tiredness can be endless. I am very aware that sitting around will kill me faster. The newest pain with a liver issue is also keeping me less active, and it’s adding to the overall hassles of my chronic health conditions as I’m very aware that I must move and participate in the world to remain as healthy as possible, but I also can’t be too far from a bathroom. The aggravations with this disease are endless, and I prefer to avoid thinking about my limitations.

* * * * * * * * * * *

I’m not holding my breath that this will help (ha, ha), but I got it done.  Win or lose, I’m getting through the b.s.

Unsupervised

Jesus Knows I'm right

I am spending a lot of time doing yet another round of paperwork for the Insurance Company, as they are trying everything they know to deny me my matching medical benefits.

Since I’m already in a pissy mood for having to justify my existence, seeing pictures all over the media and facebook about man’s inhumanity to man is draining the last bit of civility from me.  I’m in my own head without adult supervision, and it’s not helping.

In particular, I’m having problems with everyone (which says that the problem is my own piss-poor attitude) and their reliance on Jesus-Christ-as-their-PERSONAL-savior, to the point where some of my family and friends are calling on their “prayer warriors” on an hourly basis for everything including a stubbed toe.

Debate on Gods Favor 2017

Don’t get me wrong, I know I have it better than many as I have a safe place to live, adequate food, and enough funds to enable a life of luxury any way one looks at it.  Because, in a capitalistic society, anyone who sits on their duff and doesn’t work has a luxurious life.

But, as I read calls for “Prayer Warriors”, and referring to God as “Dad”, and bemoaning the fact that everything from a case of deteriorating sight to a new roof on the inn can be fixed by prayer, it just leaves me tired.

I don’t have the answers.  However, I do believe that prayers can’t hurt and should be a silent thing.  I don’t believe that prayers help anyone except the person praying offload a burden (kind of like writing this blog).

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And, while I’m not a fan of the atheist point of view, as often it’s confrontational and argumentative, I also believe in being practical, which many atheist/s appear to be:

 

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At the end of the day, I don’t know if Jesus knows or cares what any of us are going through.  But I have made the conscious decision to be the best person I can, and try and ignore all the rest of the “I’m right” b.s. about everyone’s invisible friend as the bible also says that “God helps those who help themselves”:

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Truly, I just don’t think that Jesus has a facebook account:

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Echoes

It may be close to fifty (50) years after I last dealt with a young man who helped shaped my impression of men and boys, but his effect on me was the gift that keeps on giving.

Violent.

Cruel.

Carelessly abusive just because he (and they) could be.

Keith Roberts 01 1979

So, last night (since I’m already frustrated and ticked off anyway with legal b.s.), I finally gathered the courage to send him a message challenging his abuse of me.  Abuse just because no one stepped in to protect me.  Abuse just because his personality was aggressive, and my personalty was more cautious.

After being attacked, repeatedly, the drama didn’t stop until I got violent back.  I got in trouble, but it was worth it.  Because they never once got in trouble for touching me.  Bothering me.  Hitting me.  Abusing me.

Let me just say, reciprocal violence is not the answer.  It should never HAVE to come to that.  Even if it works to end the abuse.

In a tit-for-tat exchange of violence, men and boys will likely win 90% of the time simply because of their personality and stronger abilities.  A smart woman realizes that and acts appropriately and with caution.

While women aren’t without defenses, I am glad that society has evolved enough in the last 40-50 years to enable me to speak up and be heard vs. just leaving the matter at an exchange of violence.  I am glad that I had a kind of ability to face my accuser down, even if it’s only through the safety of the internet and facebook.

Keith Roberts 02 2017

He hasn’t responded, and he may never do so.

He may share this as hot gossip with the members of our class that he still speaks to.

Frankly, I don’t care.  He was a violent jerk in high school, and he’s likely still a jerk.

But, I got it off my chest.  Even if he doesn’t remember me, and/or never acknowledges that what he did was wrong, I’ve finally stood up for myself in demanding an answer vs. just leaving it as a violent episode in my past.

If I get an answer, should he remember those times and choose to respond, I will use that as a learning opportunity as not knowing that answer has always bothered me.

Getting an answer from him doesn’t mean it was my fault.  It also doesn’t mean that it will be a truthful answer.

But, getting an answer is the start of healing.  Just like demanding an answer was also part of my overall healing.

Tired. Sapped. Wrung out.

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The 100+ degree temperatures experienced each day over the last couple of weeks are taking their toll on me.

I’m sleeping away most of the day, and still tired at night – but not tired enough to sleep well.

I’m snoring more, and wish that I could get out of my own way for getting things done.  But, it’s hotter than heck so I’ll continue to do what I can when I can while enjoying the nice weather.