I should be up and hustling to get to the new place and start working, but I’m dealing with my normal morning congestion and lack of umph. My arms have been tingling all morning (I started today at the lovely hour of 5:45am, and only now am I even close to being ready to get started), and now my right shoulder is spasming again. Psychomatic? Who knows? I just know that it hurts, and I try meditation and other biofeedback measures, along with gentle movements, to get it unkinked every day. More pills and their side effects (never mind the expense) are not my first choice for anything that’s bugging me.
Anyway… as I’m going through the legal case gyrations for preparing to sue my employer for not recognizing my disability, I’m continuing to challenge myself about whether or not I’m sick “enough”.
The whole challenge of fighting to be as well as one can be involves living in denial. The absence of a wheelchair or a white cane plays right into Society’s suspicion that I must be faking it, as I continue to try to live every day instead of retiring to the sidelines, waiting to die.
Seeing all the “Fault is in our Stars” updates on CNN about the passing of the male half of the couple at the tender age of 25 isn’t helping, either. None of us knows how long we will have in this world, or the qualities of our lives, and I prefer to LIVE vs. simply to exist, waiting out whatever time I have available to spend on this big blue marble in space. But, living is expensive, and I want my money or need to find a new way to make more that will accommodate my failing abilities.
Last night, driving home after I pushed myself too hard, I caught myself weaving on the road a bit (thank heavens for those noisy Doc’s Bots to let you know when you’re crossing the white line or drifting). It was a clear indicator that I was too tired to be driving, but with my home 45 minutes away from my apartment, and my stuff at my apartment, there wasn’t a heck of a lot of choice in the matter.
Didn’t get a whole lot done while working on the new home as the energy wasn’t there, and climbing the ladder is scary when trying to work on the windows (I’ll have to find a better, platform-like solution, if I’m going to continue to try and do the home repairs myself). I did figure out, though, that I’m not too proud to go all white-trash-on-parade and staple the screens to the window frame INSIDE the house (pictures to come later), vs. continuing to try and put it up improperly/properly on the outside of the windows and risk falling.
But, this is what happens when one is determined to stick to a schedule and get moved, and the budget and stamina says, “Ha!”
This morning, I need to pack a bunch of light weight boxes, get them into the car, and then get over to the new place and put them into the storage shed so that I’ll have room here to keep on packing, and after that I’ll continue painting. Oh, and to also take measurements of where the baseboard will go on every wall, as I think I’m being taken advantage of for outrageous pricing. But, instead I sit here double- and triple-checking myself, very introspective, trying to make sure that I’m confident I’m not goldbricking because of having to deal with the lawyers.
I don’t think I am exaggerating the effects of this disease on my life, but knowing what I can do at times with 26% lung capacity (very Russell Winwood, of http://www.COPDathlete.com fame for trying despite the reality of the challenges we face), I also believe that no insurance company can put restrictions on what I can or cannot do in my fight to remain as normal as possible despite the challenges of my breathing.
When I wrote my declaration this time, I put in a bunch of stuff about doing a walking tour of the Grand Canyon the day after getting the stitches removed from my skin graft following my cancer surgery in 2013. I also put in there that I later damaged my left knee and right leg trying to protect the site of the healing wound, when I flipped over the kayak. Yeah, I was angry. Yeah, I was grandstanding to try and illustrate that sitting on my butt is not my first choice, and will NEVER be any kind of choice that I will easily make. I like challenging myself, and I resent very much being told to sit down as trying to pass for normal (something I’ve done relatively well my entire life) will ruin my case.
My declaration may be grandstanding a bit, but I think it also serves to show that I’ve been very active all my life for an overweight, basically lazy and always stamina-challenged person, and that I resent very much being forced to curtail my activities due to the toll this disease is taking on my life. Memories of my childhood include all those times when I could escape my mother’s tender cage, and actually go camping, ride a horse, jump off the dock for hours practicing my diving (which, yes, later sent me directly to the hospital with pneumonia).
Hearing my Mother’s shouted admonitions to, “Walk ! You will walk, young lady!”, being yelled at me from across the girl scout’s campground now coming from my lawyer’s mouth is just that much more unsettling and nightmarish, you know? (That’s not a slam against my sainted Mother – the lawyer’s motivations are profit driven, and Mom’s were a combination of desperation [not another hospital bill !] and love driven. I get it and am truly thankful for all her heartbreaking sacrifices).
That being said, though, I’m angry to be trapped in this life, damnit. And that anger is before one realizes that I hate being told to sit by folks that don’t understand that it’s the LAST thing one should do if one wishes to remain stable and somewhat independent and well until the end of life. Camille is the last thing I should aspire to be during whatever time I have left…
I also wrote that I’m stuck in limbo, unable to go on with my life and pursue options such as “a ticket to work” for finding handicapped people jobs that work with their illnesses, because I’ve had to focus on getting moved into an affordable place (and buy a home – horrors) because I’m not getting the benefits I earned and the inconvenience of financial poverty has smacked me full in the face.
Not sure how the lawyer is going to take all this drama, but I felt better writing about that, and getting it off my chest than about bemoaning how sick I am every day and how much time it takes me to get up and moving. Plus how inconvenient it is to worry about blood sugar spikes, having the runs, and dealing with the exhaustion of not feeling my best yet trying to keep engaged in life.
I’ve probably come across as some sort of crackpot (that’s ok, as long as I get the benefits I worked to earn), but certainly it makes me Ms. Crabby most days. But, if crabby keeps me in there keeping up the good fight, I really can’t complain.
For today, though, I have got to get up and get my butt in gear. Too much to do to waste any more time on introspection today.