I keep falling down the rabbit hole that is otherwise known as Pinterest....
I was searching for a little bit of inspiration, something funny, motivational - simple and quick because I've missed a few days posting due to increased pain (The Walk had some after effects, combined with a couple of other factors, my pain has been pretty bad). And I really have so many thoughts all interlinked that it seemed writing them down and separating them would be better left for another day. So, determined to get to sleep earlier (failed) and to post something - I'm not doing too well with the attempt to write every day in January - I turned to Pinterest again, searching for something that clicked with me - I wasn't feeling inspired by anything - searching probably took longer than the writing would have.
Then my laptop fell backwards and I attempted to stop it in case it fell off my bed and since my right hand was on it, I tried to stop it with that, realised it's pretty useless and has zero strength, got my finger jammed right in at the hinges without managing to stop it from closing upside down and putting the computer to sleep (it closed THAT tight on my finger - THAT tight, I am amazed it is not PURPLE yet). Then I found this and it clicked.... the perfect post for right now:
Sometimes, it's really the only option! Night night from the insomniac. Tomorrow is another day!
Every day I time I write this blog I wish I could start it with something really positive - some amazing progress in my movement, or the magical disappearance of my pain... or the magical discovery of a drug or concoction of drugs (herbs, teas, whatever... I try them all) that has made my pain vanish (not only would that be great for me right now, I reckon it might make me rich too...) However, every time I sit (lie) down with my computer and start to type it always feels like my reflections are negative. I hate to seem negative, and most of the time when anyone asks how I'm feeling, they rarely get the full, honest answer. It seems so much like complaining. Although writing feels more like reflecting; therapy... even if I still have to look forward to the time the reflections are more positive. This week feels a bit like it's just been one of those weeks again. My pain got worse on Tuesday night and really hasn't eased in that specific area since then. When the pain increases, all I want to do is sleep; except (as yesterday's blog explains) I don't sleep at bedtime - I take all these crazy drugs that I HATE that I'm still taking, sometimes they work well, sometimes they just take the edge off for a short time and it's not enough for me to fall asleep; I end up topping up my ice machine at 4am; topping up the drugs at 6am and then eventually falling asleep.... all damn day. I've tried the very logical - just make yourself wake up early and you'll go to sleep early. Nope, doesn't work. I've even tried - several weeks ago - just giving up on sleep. One day, late last year, I went to physio on zero sleep, had a normal day and then still couldn't sleep until after 4am. I think I said this before, my Doctor reckons I should just give in to my body's time zone and try living in Hawaii or Tahiti. Good plan. In the meantime, trying to get comfortable in between (literally) a dozen - maybe more actually - pillows, hot water bottle and ice machine shouldn't be THIS HARD!!
Every day, I always do my exercises - I do have a new one this week. I have to try to strengthen my subscapularis (muscle under my scapula) by pulling on red tubing. Doing this with my right arm makes me feel like I am getting really strong - I can pull! - I'm improving! - and then I do it with my left (just for balance) and my new-found illusion of strength quickly dissipates. The tubing is not very difficult to stretch. Anyway, I'm taking what I can get, I could barely tie my shoelaces a few months ago! And the plan behind this is that it could... possibly, maybe, perhaps, theoretically, be the case that if my new pain is actually the scapula 'unsticking' and the pain is perhaps, maybe, possibly caused by the bone pulling on all the weak muscles, then it could... possibly, maybe, perhaps... be reduced by strengthening the subscapularis muscle which would hold it in place. This would be a good thing. Well, really, it's absolutely all relative, but in my case, right now, IF that is the case, it would mean what my physio has been trying to do for 3-4 months is actually working. It was working before; in a gentle way, my measurements slowly increased at the end of last year; my arm movement (i.e. the head of the humerus was moving and not stuck) was better and very s - l - o - w - l - y, certain arm positions were achieved, mostly with assistance at the moment IF, however, this pain is coming from scapular winging, it means the scapula is no longer completely stuck down by scar tissue and I'm hoping that might mean more options, faster. I see my specialist physio, Marty Kelly on Tuesday morning in Philadelphia so I will be all prepared with questions and hope that he will see some small improvements since November. However, I tried to read up on "frozen scpaula" again today and found that on Google, Ask and AOL, my blog is the first hit in "frozen scapula". So, that's kind of cool, but totally not helpful in my quest to find more information! I've love to hear from anyone who stumbles across my blog while searching for their own information - I believe we all have useful things to share. In the meantime, all I can do is TRY - as can anyone, everyone, with everything we all have going on. So I have selected Pink's song and I'm going to see if I can find the live dance from the AMAs to put below the lyrics. Let's consider it a motivational PINK (who's just awesome anyway) song of the week. This week is about TRYING.
"Try"
PINK
Where there is desire
There is gonna be a flame
Where there is a flame
Someone's bound to get burned
But just because it burns
Doesn't mean you're gonna die
You've gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
*
* * *
* *
Ever worry that it might be ruined
And does it make you wanna cry?
When you're out there doing what you're doing
Are you just getting by?
Tell me are you just getting by, by, by
* * * * * *
Where there is desire
There is gonna be a flame
Where there is a flame
Someone's bound to get burned
But just because it burns
Doesn't mean you're gonna die
You've gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
Gotta get up and try, and try, and try
Gotta get up and try, and try, and try
You gotta get up and try, and try, and try
Gotta get up and try, and try, and try
And for some amazing extra super motivational PINK :
(As usual, I don't own any music/ videos etc. All linked to Youtube and artists accredited)
A more literal choice tonight.... pretty self explanatory! I have had such awful insomnia this week due to some pain that we think might be the lateral edge of my scapula coming 'unstuck' at the bottom. This would really be a good thing because that has been the point of all my drug-enabled-therapy, but it also means that one tiny fraction is coming unstuck and the rest seems stuck still, and the muscles have no strength in them, so it feels like one edge of my scapula is trying to constantly pull away from my body but all the other muscles are not strong enough to "hold" so instead it's just pain and pulling and burning and much unpleasantness... It really has been keeping me awake so I've resorted to all combinations of drugs that seem to work sometimes, then not others. I am sure I would feel much better if I could just get some sleep - so, thank you Morven, this song is perfect!
"Sleep"
Spend my nights howlin' at the moon,
Never wake before noon,
When the sun, it rises,
Oh, it always rises soon,
'Cause I spend my nights howlin' at the moon, yeah,
I never get sleep, sleep, sleep,
No, I just reach, rea-, reach,
I can feel it on the ends of my fingers,
And taste it on the tips of my teeth,
So you see why I never get sleep,
(I can't get no sleep,
Don't know why,
I can't get no sleep,
Don't know why,
I can't get no sleep,
Don't know why,)
Spend my night shootin' at the stars, yeah,
Tryin' to change the world with this guitar,
And I know it's a long shot, but it's working out so far,
So I spend my nights shootin' at the stars, hey,
I never get sleep, sleep, sleep,
No, I just reach, rea-, reach,
I can feel it on the ends of my fingers,
And taste it on the tips of my teeth,
So you see why I never get sleep,
I can't get no sleep (never get sleep),
Don't know why,
I can't get no sleep (never get sleep),
Don't know why,
I can't get no sleep (never get sleep),
Don't know why,
I can't get no sleep,
(Count sheep),
I've already tried,
(Drink whiskey),
It makes my throat too dry,
(Smoke weed),
It makes my eyes all red,
(Take a pill, Al),
What, and end up dead?
I can feel it on the ends of my fingers,
And taste it on the tips of my teeth,
So you see why I never get sleep, hey,
I never get sleep, sleep, sleep,
No, I just reach, rea-, reach,
I can feel it on the ends of my fingers,
And taste it on the tips of my teeth,
So you see why I never get sleep, yeah,
Yeah, you see why I never get sleep,
Oh, so you see why I never get sleep.
(As usual, I don't own any music/ videos etc. All linked to Youtube and artists accredited)
At least I am fortunate enough to be able to sleep all day when sleep at night eludes me.... like today. Today, (despite setting my alarm clock for 2pm - reset to this at 9am, I'd had a little sleep before that,but not much; got up to get ice packs and reset alarm) I woke up, first thought is still always "ouch"; tried to pull myself into the world of consciousness; noticed it was still light outside (I could see a sliver of light above the curtains), reckoned I'd woken up before my alarm went off (a rarity), reached for my phone and it was..... 5pm. Couldn't believe it. Oh well, at least the nights are getting lighter...
They who dream by day are cognizant
of many things which escape those who dream only by night.
