I think I'm going to make one of these mugs and carry it around everywhere with me, and then on a bad day perhaps other people's expressions will make me smile. :-)
Maybe a full range - wouldn't they look great on these amazing mugs from Fab?
'Magic Hat' Mug & Lid from Fab.com; drinks combos & text added by me.
I've missed a couple of days... partly because I have stuck to my painkillers + energy drinks (+ sheer stubbornness) = ability to do things and go places; and partly because 2 days of that meant I slept all day yesterday.
Today was a beautiful day - the kind of winter's day I really love here: cold, but with a bright blue sky and the sun shining. Mum and I went out a walk. Or, as she calls it, at my pace, a stroll (definitely more accurate). It's the first time I've been out a walk for several months and we did walk slowly, but an estimated ~2 miles in total. A two mile stroll is a major achievement for me - and focusing on the little achievements (anything that makes us smile!) is important, when life becomes 'step-by-step' or 'day-by-day'.
It wasn't an easy walk for me - and it really was at snail's pace, with some rests and pauses - but the fresh air felt really good. We did a circuit around our neighbourhood, and then continued and did another one across the main road, and back home. It's amazing how natural it is for our bodies to adapt in ways we don't even think about.... until we can't do it - only then do we realise how much of an effort we make, entirely unconsciously, walking up and down little slopes or hills. I know walking uphill (I'm talking a slight incline here - nothing major) is hard, and I know it requires rests because it makes breathing more painful and my 'stuck' rib cage attempts to expand further so my lung can expand, and it can't. I know to stop, take some breaths (sometimes hunched over) and then I can go on - but it is much more reassuring to walk with someone beside me, just in case. I hate saying that, but unfortunately, right now, it's very true. (Even more unfortunately, also justified.) However, today I learned that going down a steep hill is harder than going up one! (Even a tiny, short one, it's the incline that tortures!) It came to one of those points where my brain knew what to do, and my body didn't. If these didn't hurt so much, they would be almost funny... describing them is quite difficult. I've tried to explain it by suggesting to someone: imagine doing a somersault (I was speaking to someone who couldn't somersault) - you know the motion, the movement and the shape, but you can't just do a somersault. A better example would actually be to imagine what it feels like to do a somersault underwater (everyone's done that, right? Is it only me who thinks that's incredibly normal...?) - you can't hurt yourself underwater, it's fun, easy, and anyone can try it - but you can't just transfer that to a gym (or a park) even if you know what it feels like. It's not the best example, but it's the closest I've come to feeling like the person I'm talking to might, possibly, be able to imagine what I mean... Except that I'm talking about something really simple - walking down a hill - which shouldn't really be comparable to a learned skill like a somersault. But it is. As strange as it sounds - and it felt stranger! -my body didn't know how to walk down a hill. Everyone knows when you have an injury, often another part of your body compensates for a while until the injury heals. Quite often, we're not really aware of it until the other part of the body that's doing more work begins to niggle too. This was like that, except I was slapped in the face with it - my body's 'compensation attempts' failed miserably. To go down a hill, we naturally lean backwards to distribute our weight and walk without losing balance. My muscles don't have the strength to do that (plus it hurts so much that they start to spasm - it's not a case of just sucking it up and dealing with an achy muscle type of pain; it's more of a black-sparkles-dizzy-nauseating-blackness inducing pain). My brain seemed to be trying all sorts of ways - my right foot on tiptoe (didn't work); twisting my hips (didn't work); various ways of limping (I really never knew there were so many) - I actually stopped and had to think: how can I do this? Ridiculous! It wasn't a big hill, we were nearly home, so I let the weird twisty-tip-toed-limping movement take over and got to the bottom of the slope as the black sparkling darkness really was descending. After refusing to take my Mum's arm for the hill, I clutched at her for the last minute until we got across the road and to the front door and I could lie flat on my back on the sofa. I'm counting that as a win......
Another gem from Pintrest... and I really hope it is true.
Sometimes, when I am being super-optimistic (or perhaps when I'm trying to make myself feel optimistic) , I focus on the benefits. It strange to think there are benefits that come of out being ill, and/ or dealing with a horrendous injury (or with anything else that completely and totally turns your life upside down) but focusing on these is a positive thing to do - to accept that there are certain things that are different because of my illness. For example, I will never take my health for granted; it means I will always appreciate my family, more than I thought imaginable; I have learned that I some very special friends who have stuck by me through the very worst times; it means I have had time to truly think about what I want out of life and how I want to get there; and over and above everything else: I want to be happy.So I have a goal, a challenge, something to work towards. And if John Lennon understood that when he was five, he truly was a genius!
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)
Sometimes it just takes is a kind word, an email, a text message, a facebook post, or a skype call to remind us life is all about our friends. I don't feel I need to say a lot today, but sometimes I am reminded how incredibly lucky I am to have certain people in my life and this post is for them. And since they are SO awesome, I have picked two songs... although if I had more space I would have picked many more...
A little help from my friends
The Beatles
What would you think if I sang out of tune,
Would you stand up and walk out on me.
Lend me your ears and I'll sing you a song,
And I'll try not to sing out of key.
* *
* * *
* *
I get by with a little help from my friends,
I get high with a little help from my friends,
Going to try with a little help from my friends.
* *
* * *
* *
I get by with a little help from my friends,
Yes I get by with a little help from my friends,
With a little help from my friends.
(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)
And, of course for our generation that grew up with:
This photo (above) is from 1994. I remember when we'd actually be outside playing in the park - playing hunt or hunt on bikes, or rounders, or football, or bike races... and we always came in at 9pm on Fri night to watch Friends - sometimes as many as 12 of us crammed into my bedroom, watching on my tiny little portable screen TV. I love those memories.
It eventually moved on to this:
And F-R-I-E-N-D-S was compulsive viewing in our university flat (Ebru, you know that's why you - and your boxsets - lived there, right?!)
We definitely grew up watching friends, so this also seems at appropriate song for MY friends.
I'll be there for you
The Rembrandts
So no one told you life was gonna be this way
Your job's a joke, you're broke, your love life's D O A
It's like you're always stuck in second gear
When it hasn't been your day, your week
Your month or even your year but
I'll be there for you
(When the rain starts to pour)
I'll be there for you
(Like I've been there before)
I'll be there for you
('Cause you're there for me too)
* *
* * *
* *
No one could ever know me, no one could ever see me
Since you're the only one who knows what it's like to be me
Someone to face the day with, make it through all the rest
with
Someone I'll always laugh with
Even at my worst, I'm best with you, yeah
It's like you're always stuck in second gear
When it hasn't been your day, your week
Your month, or even your year
I'll be there for you
(When the rain starts to pour)
I'll be there for you
(Like I've been there before)
I'll be there for you
('Cause you're there for me too)
(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)
“Many people will walk in and out of your life,
but only true friends will leave footprints in your heart”
~ Eleanor Roosevelt
Always true:
Good friends are like stars.... You
don't always see them, but you know they are always there
~ Confucius (I've also seen this attributed to
Roald Dahl)
(Even though it's after midnight, this counts as my 22nd Jan entry - my computer crashed. Totally valid excuse.) I was listening to some Coldplay (always awesome) and this month I've really been paying attention to lyrics and really thinking what do they mean to me? Usually I'm very much a words person (as most people who know me are very well aware of) and quite good at the whole 'why use one word when twenty will suffice?' So, usually, I do know lyrics in songs and I can often think of entire lines of songs when I can't remember the title. But really paying attention to them makes them more like poems; I feel as if I am back in an English class, analysing the meaning of a piece of writing; or, very similarly, back in art class, analysing the composition and symbolism of a painting. It's always something I found really enjoyable and it always seemed to 'fit' with the way my brain worked - I always feel I can see multiple meanings in everything. Not that I didn't realise this before, but most songs are love songs - songs about relationships, getting hurt, breaking up, making up, being in love, wanting to be in love... however, it's interesting to interpret those in different ways; to think of love as being something bigger than two people - some love songs seem to speak about any relationship in general; others make me feel like love could represent many things. So while I was listening to Coldplay's Viva la Vida and really paying attention to the lyrics I was surprised at how I really connected with them. It's a bit of a strange song (lyrics-wise) and it has a lot of religious references, which don't resonate with me, but when I really really listened (and read) the words I felt that it also perfectly described this feeling of loss that I sometimes feel with regard to my life. "King" could represent anything - an achievement, an employment position, a relationship... basically he's talking about being king of his world - a ruler, someone invincible, feeling like you have it all... and then it all disappears. This really speaks to me a lot about how I felt when I got Lyme - of course, I didn't even know it was Lyme at that point - but when I initially got ill. Everything just changed. I honestly went from feeling like I had the world at my feet, I could do anything, my future was just laid out in front of me, waiting for me to take it by storm. And then, suddenly, there was nothing but fear, pain, uncertainty and sheer exhaustion. It took me a long time to really deal with that. After I found out in 2008 that I actually had Lyme and not the non-specific "chronic fatigue syndrome", which is a meaningless diagnosis with no treatment, a strange array of symptoms, a dreadful prognosis and suffers from a severe lack of understanding - from doctors, medical professionals, ordinary people and even patients themselves. Finding out I had Lyme made things different - for starters, there was actually a treatment plan - telling people about it, explaining it, reading research and solid information was so much easier than dealing with something unknown (and with remaining negative connotations). Although Lyme awareness has increased since 2008, it's still not well understood (again, by researchers, medical professionals, ordinary people and even "lymies") - it is really an "invisible illness" and is difficult for people to understand, because, as with other invisible illnesses, they are.... invisible. Often people don't look ill at all... or more accurately, on those days they stay in their bed and don't let anyone else see them; or when there is no other choice - layer on the make-up, hat and sunglasses, drug yourself up to your eyeballs and fuel the day with energy drinks and coffee - knowing that the next day(s) will HAVE to be spent in bed! But having an answer and a solution really gave me the idea of a future back - everything that had been swept away so suddenly slowly began to build in my mind again. Then I took a tumble down the stairs. Really not part of the plan. And, of course, nothing's ever simple, so obviously the full extent of that took a long time to become apparent. And, of course, I am a medical anomaly and have, in every sense of the word, wrecked my entire shoulder joint. But I have, at times, this year, had the same feeling that my future had almost come back; I had potential and possibility again and now I am back to taking things one day at a time; not looking too far ahead and facing the fact that I simply don't have all the answers (again) and that (here's that damn word again) patience is key. It's difficult to explain to people how hard it is to try to make plans when you can't visualise where you will be (physically, emotionally) the very next week. I know from other people who have had similar experiences that they say the same. Ironically, the way to build that up starts by not looking too far ahead either and just trying to make little plans each day until you are confident enough you can believe in the ability to make bigger plans. So there's a bit of me that feels like I've been here before... and I got through it last time, so I plan to get through it again.
"Viva La Vida"
I used to rule the world
Seas would rise when I gave the word
Now in the morning I sleep alone
Sweep the streets I used to own
I used to roll the dice
Feel the fear in my enemy's eyes
Listen as the crowd would sing
"Now the old king is dead! Long live the
king!"
One minute I held the key
Next the walls were closed on me
And I discovered that my castles stand
Upon pillars of salt and pillars of sand
I hear Jerusalem bells are ringing
Roman Cavalry choirs are singing
Be my mirror, my sword and shield
My missionaries in a foreign field
For some reason I can't explain
Once you go there was never
Never an honest word
And that was when I ruled the world
It was the wicked and wild wind
Blew down the doors to let me in
Shattered windows and the sound of drums
People couldn't believe what I'd become
Revolutionaries wait
For my head on a silver plate
Just a puppet on a lonely string
Oh who would ever want to be king?
I hear Jerusalem bells are ringing
Roman Cavalry choirs are singing
Be my mirror, my sword and shield
My missionaries in a foreign field
For some reason I can't explain
I know Saint Peter won't call my name
Never an honest word
But that was when I ruled the world
(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)
I also think the song is about the futility of life and how everything can change in an instant and nothing is ever guaranteed, no matter what plans we make. Sometimes that sounds a bit miserable, but sometimes it gives me great comfort - it always just makes me feel like no-one has control, everything is just hurtling through space and randomness, and we are all just along for the ride.... so we might as well do our best to enjoy it when we can.
And the day came when the risk to remain tight
in a bud was more painful than the risk it took to blossom.
After physio on Thursday I fell asleep, possibly due to pain, possibly with a migraine, and possibly because of the mix of drugs I had tried, but whatever the cause, I slept through Thursday's blog-post time and missed out on the lyrics of the day. Yesterday, the continuing pain from Thursday's session at physio really didn't see me in much of a more conscious state and so I missed yesterday too. As you may have gathered, Thursday's physio session was back to the experimenting. The drugs definitely worked in terms of the actual movement and managing my exercises a bit better, but I haven't quite figured out what combination of drugs will help my body adequately cope with the after effects, so it's been a quiet, extra sore, couple of days. With not much else to say other than to try to pull up some lyrics that are supposed to instill optimism - the entire point of this little personal challenge - today I've decided on these:
"Smile"
Music by
Charlie Chaplin Words by Turner Parson Sung by Nat King Cole
If
you smile through your fear and sorrow
Smile
and maybe tomorrow
You'll
see the sun come shining through
For
you
Light
up your face with gladness
Hide
every pain and sadness
Although
a tear may be ever so near
Smile,
what's the use of crying
You'll
find that life is still worthwhile
If
you just smile
(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)
