Good morning,afternoon and evening which ever it may be for you. I’d like to report in that all is well and feel like a million dollars. But in truth I’m tired, very tired and my body is very sore and has been for a week. Sore to the point where my tendons feel stiff like bone and the tension pulling them feels as though it will rip them from the very bone they are attached to. Yes, that kind of pain. Lol. But it’s okay right ? Everyday has its own set of challenges and obstacles to observe and concore. To I sit in the cold and rain, dark and wind of the morning thinking of my life. This time of year has a way of making one reflect on lives lived and things gone by. This year I must say a feel pensive detachment from the season. I’m still waiting to confirm that cancer isn’t a factor in my life and as I wait , I feel my body aching and my throat tighten with each passing day. The weight still dropping, mean while I prance around pretending that everything is okay.
It’s been hard this year to handle the changes as they come. I’ve failed once already this year at life as change took me by surprise not once but twice. But I digress the point is never to live in the PST but to learn from and move forward. Now does that mean we move forward alone or with others ? Who’s to say really, I’ve found that life, for me, is far to complicated to decern and as Parkinson’s destroys my ability to separate perceived fact from fiction I find these days I’m doubtful of every choice I make for the fear that I’ve make the wrong choice lingers. Blue or green, fish or chicken. Cable or electricity. All of which I’m finding I see only in shades of muddy grey. You see it shakes the very foundation of a persons soul when they are tossed aside like last weeks newspaper, old news, used, read, learned and unwanted. Be it from friends,lovers,family or stranges alike. We all need to feel validated and trusted.
Well…… Apparently I’m going to talk briefly about many things bouncing around in my head today. I feel like crap, I wish I had a more poetic way to say it. I’m sure I could one but the point would be lost in flowery words. Simply, I’m in pain.7-8 my shoulders have little range of motion, my hips cam barely sustain the pain to keep me upright and my balance sucks. Please understand there is NOTHING anyone can do. This IS PARKINSONS DISEASE. See Dr’s don’t really tell you what it’s going to be like because PD is different for everyone. Words like, stiffness,rigidity,cognitive loss, positional instablity,dementia,distonic cramps, dyskinesia. Normal people don’t know what to associate these words to, nor did I at first…. Honestly they don’t mean shit until you experience them with a neurological disorder. Imagine two cars, these are the messages your brain want to send to your face , one says smile,the others says,laugh. Well Parkinson’s disease derails those cars on their way. The car saying laugh made it just fine, but the car saying smile ended up backing into the pain center and sent stage 9 waves of pain down your foot making your to s feel like they are on fire from electricity. So you need up with a face that isn’t smiling and ends up looking a bit pained as a it laughs,but no smile, because remember one of those cars made it to its destination. So you get it, messed up brain signals.oh the joy lol.
Right then today. Ot and PT here in Portland Oregon then back home, clean, paint and sleep. I’m starting off this week not feeling well as this last Saturday and Sunday were very bad pain days, stiffness,rigidity,slow. So starting the week not feeling 100% can be tricky. Either I’ll gain strength from the activities of the day and week or it will kick my ass and make my symptoms worse. Sadly there is no real way of knowing what my bodies reaction will be. On to happier news I finished a small piece ..
Well sadly the last two hrs of this F’ing post was deleted somehow.probably me being a dork. But I’m tired. I’m home back from OHSU, goodday and goodnight. I’ve new paintings to show, so I’ll be back.
So sorry you are having a rough time. Sending positive thoughts your way.
Great to hear an update. Keep doing what you can
I love you more momma sweet dreams hope to see you soon. Be well.
and as always, i have my fingers crossed for you.
Hello Benjamin. Really sorry to hear you are having such a crappy time of it. You are plodding on the best that you can, you are being useful with your time when you are able to do things and that’s no mean feat. Looking forward to seeing your new pieces. Kate :0)
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Thanks Kate, I’m probably not it sung my time, energy wisely lol. I’m not very good at energy management yet. You’d think after nearly 5years of PD I’d have it sorted. Maybe in the next 5 I’ll get it 🙂
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