t minus 13: Inspiration Required

Looking ahead towards my physio session tomorrow, all I can think about is how hard this is.  Not the exercises, the passive movements, the assisted movements; not the pain, the frustration that I can't make my body do more; not even suppressing the constant urge I have to throw things at any other patient (especially new ones!) doing 'advanced' shoulder exercises that I have been working towards for 3 bloody years! 

The hard bit is trying so f*****g hard and not making any significant progress; of feeling like things had been going "relatively ok" - as in during week one the room did not spin or go black; nobody had to come running towards me with a chair, a cup of water, or to catch me before I fell; and importantly, my physio did not make his 'what the hell is going on with your body?' face - that is definitely what would be termed 'relative progress'.  With those baselines, it really shouldn't be that difficult to make some 'relative improvements'.  So, I guess for a whole week, I did. 

I think it's fair to say this philosophy seemed to be working last week

Until Monday.  When I found my knees curling themselves into my chest and my left hand trying to 'soothe' my right shoulder by just touching it, unable to leave it alone; when I tried to 'hold up' my arm and it just flopped, as if lifeless, back into my physio's hand; when I had to give up on a couple of exercises for that reason; when I could trace the exact location of the long thoracic nerve the entire way down my physio's back to show him exactly where my pain was; when doing one exercise made it feel like that nerve was filling with icy cold water; when I had to keep checking the walls to make sure the sparkling wasn't turning into big black dots (only a couple); when I told the new intern that if I looked like I was just staring into space and not doing anything, it would probably be necessary to get a chair close to me asap, "Why?" he asked. "So I don't hit the floor." and explained my weird 'syncope without loss of consciousness' ('fainting without fainting'); when I realised mascara had been a ridiculously optimistic idea - sleepy half-shut eyes would have been better.  Oh, and when the 'what the hell is going on with your body?' face appeared far too often.

I guess 'relative improvement' is that I didn't need that chair, and the black dots didn't last long.  However, 'significant improvement' it is most definitely not. 

Because, like it or not body, brain says you are going back!

As I think about my next physio session - honestly wondering what surprises my body is going to throw at me next, I also wonder sometimes: how long can I do this for? 

But I remind myself of this quote, because it is the truest one I know:

Nobody can argue with that

At different times, my physios and doctors have acknowledged this difficulty - which quite honestly I think stops me from totally losing it, or feeling crazy.  When someone you are trusting with your health, and therefore your life, acknowledges how you feel - even shares in those feelings with you, it is one of the greatest comforts I think any health care professional can offer.

SURGEON

"Once something goes on this long, it becomes a mental challenge as much as a physical one.... for all of us." 

Said my surgeon, to both my physios, my mum and me - 8 months after my first surgery.  So that would be just over 26 months ago now.

Reckon the words "indomitable will" might sound good on a CV.  Proof? I have this blog...

PHYSIO

"Why have you not gone crazy yet?"

My specialist physio asked....... or rather half asked, I just filled in "crazy" as he struggled to search for a more appropriate word - around 18 months ago.

I sent him this.  He liked it.

DOCTOR

After another attempt to 'push through' failed and various discussions followed, I grumbled to my Doctor, 

"If I wasn't going to try hard, I think I would have thrown myself off a roof a long time ago."

"Probably something much higher."

He replied, as if we were having a perfectly normal conversation - sometimes it feels like his sense of humour keeps me sane. That would be about 20 months ago.

Because my awesome doctor is as crazy as I am, apparently

I think back over everything I've tried - I've had some little successes, like the incredibly significant shoulder shrug that held so much optimism and brought so much excitement to everyone - myself included, but that was 26 months ago too.   I really feel like I'm still waiting on the next 'shoulder shrug' - the next significant thing that lights the way with optimism again; that whispers quietly to me, "this is working".  And even more importantly, I believe it.

Inspiration is always good; actually sometimes, it's essential:

Not planning on it.......

"Success  and  failure.  We  think  of them  as  opposites,  but  they're  really not.  They're  companions - the  hero and  the  sidekick."

~ Laurence  Shames  ~

Spot the Difference

It has been a couple of weeks since I blogged.  It feels like March has just disappeared this year.  I have probably spent half of it asleep and the rest of my awake time split between physio and lying on my bed with my ice machine anyway.  I really did have a rotten bug, coughed far too much for anyone, never mind the current state of my shoulder - I still don't feel like I'm completely over the bug yet, the cough is kind of lingering, but not too bad anymore and my glands still feel a bit swollen, my throat's still not quite right - not enough to really make me say it's making me ill, but definitely enough to say it's still hanging around. And I know any extra stress on my body just makes me exhausted just now, so not much more I can do about that... apart from the sleeping!

Friday was my birthday.  It definitely led to a lot of reflection, thinking about this past year and how much I really have improved, but also realising how far I still have to go and this time last year, as I've said before, I really thought I'd be back to normal by now.  It was, however, a big improvement on last year's birthday - not that that would have been hard!

I was comparing photos, so I did this:

On the left, last year's birthday.  Turning 30 with my super-sling on was definitely not a high point of the year.... Note the arrows: 

 - My SLING!! Permanently attached at this point

- You can almost see my socks and leggings - I couldn't put my own socks or shoes on at this point, and even the leggings were awkward and a bit of an effort to get on - but I could only wear those, or sweatpants, because I could not fasten buttons or ties; also my leggings were pretty much the only thing that fit me properly because I had lost so much weight in the time between injury and surgery because the pain made me feel so sick all the time.  This year I am about a stone (14 pounds) heavier - I am a size 2 now; no more double zeroes! - and I am delighted about that, so I am announcing it here.  In public!!

- Top: a vest/ tank top that I could actually step into and then put my arms through the straps - with help - getting anything over my head on my own was impossible, and even a baggy T-shirt required help... so I lived in the tank tops and cardigans (which I also needed help getting on)

- My hair:  washed in the kitchen sink by my Mum the day before so I would have clean hair for my birthday, and obviously just left to dry on its own since I couldn't style it; also spotty face from the stress, no make up because it was almost impossible... and also, I really didn't have the energy to care!

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On the right, turning 31, one year and 3 weeks after my surgery... These arrows:

- NO sling!! In fact, my right arm is 'holding' the cake box (actually it's not really taking any weight yet, but it can reach it...)

- Boots! With laces! Tied by me! (I do still have to sit on the floor to tie my laces/ put my shoes on, but it's still progress.)

- Tights! Try to put on tights one-handed and then you will appreciate this achievement!

- The arrow on my shoulder is actually pointing to my dress - which goes on over my head, no zips or buttons (that might still be a good thing), and which I can get on and off on my own.  I actually bought this dress last summer and I tried it on in the shop and had to call my mum to come and help me take it off - again, marked improvement.  The little things add up!

- Also, given that my entire health details are available for all to see anyway, why not point this out too.... I am wearing a BRA under that dress!  Still soft and wireless and carefully selected so the straps don't press against my sore bones, but this is also progress!! 

- Styled hair, pink hair (dyed with my own left hand), the ability to wash my hair on my own, style my hair on my own, and put on make-up.  To be fair, these are all currently done left-handed (totally ambidextrous) but last year even that was painful - actually, I wasn't even supposed to use my left hand for much at this point last year according to the Dr's instructions as it could still pull against the surgical area across my back.

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Plus, we went out for dinner.  I still had one pillow with me, and I do still have to make sure I am adequately drugged to survive any trip out, but again, it is all baby steps and they add up.

It can be quite frustrating for me trying to examine my progress day-to-day, as it is slow.  I don't see big differences, because it's not happening like that.  Having a visual comparison really helps me to look back over the past year and realise that I have made huge steps forward in what I can do now - all because the baby steps add up.

And, yes, I wish it was faster, I wish I could just work harder and see results quicker, but I think it has been pretty much established that isn't going to happen; this surgery doesn't work like that. So being able to play 'spot the difference' between the photos was a pretty positive mental exercise for me.  And I hope that next year's birthday photo will just be a normal photo of a normal me ... actually, being upside down or hanging from a flying trapeze or something similar would be even better...! Watch this space!

A day to look forward to:

“When you realize how perfect everything is you will tilt your head back and laugh at the sky”

  ~ Buddha

Grumpy

Today I feel grumpy. I had a decent amount of sleep, but really it was very broken by pain with every movement, I couldn't get to sleep because the pain was making me uncomfortable and then the more annoyed I get the more elusive sleep becomes.

However, I made it through the day (with a little help from my drugs), read some news, watched some video, obsessed over how much snow might fall in the Philly area - disappointed about this too! Four inches.... ok, so four inches might have caused London Heathrow to shut down a few weeks ago (ridiculous) but four inches here is nothing.  It is not exciting.  If there's a snowday and blizzard watchs only slightly farther north of us, I'd really like some decent snow too!

Managed to play bananagrams after dinner but I do still struggle to sit for long.  Joining in the party now, are my re-connected muscles that have started throwing their own temper tantrams as soon as they get tired. BAM. SPASM. F**K. So, off I went to bed feeling decidedly grumpy, in pain, and struggling to find relief.  

Got myself all sorted into bed, ice machine plugged in, velcro-ed around me, pillows built up around me, computer on knee, tea in left hand and then something fell off the bed..... please don't let it be important.... please don't let it be important..... I looked and, most definitely out of reach, lay my phone: my all-in-one flashlight, alarm clock, time in the dark etc.  Kind of necessary.

I eased my left side over until I managed to perch the tea on the box on my nightstand; especially there for that reachable purpose (after coffee went everywhere last week - should've thought of it sooner); un-velcro-ed the ice machine; considered trying to reach the phone without getting out of bed, decided that was too dangerous, climbed out of bed, got my phone.......... climbed back into bed (this is exercise in itself), re-velcro-ed the ice machine's shoulder pack around me, fixed my pillows, got my computer back up on my lap, reached for my tea......... and knocked my just-about-to-eat packet of popcorn off the bed. And here we go again....

It's so annoying, just simple simple thing being such a process... well, usually it's just a bit annoying, but today, in the depths of my deepest, darkest grumpiness I was really frustrated.... OK, I wanted to break things.

I went on Pintrest to search for a grumpy quote and - typically -found all sorts of inspirational ones.  I'm not sure if this made me feel better, or annoyed that even the universe can't just entertain my grumpiness for a couple of hours!!  Anyway, I did find a few worth sharing... more of the funny or inspirational kind, and they did make me smile....

I have the ingredients for this.... perhaps I should try it....!

Yup, it's all about perspective.  Universe: I feel I deserve a few more good ones than bad ones for a while please?

I have also seen this a few times on Buzzfeed - the title is "19 People Who Are Having a Way Worse Day Than You" and to be honest, I don't think it really applies to everyone (unfortunately I'm quite a good contender for that just now) but I simplye adore number five.  As wrong as it is, I can watch this clip over and over and over and over and over and laugh more each time.  Having hit a couple of bad springboards in my life, I do have sympathy for the guy too, but I've never seen it done like that before!!  Actually, here it is on YouTube:

I dare you not to laugh....!

And this little rhyme just made me smile.

Nothing is permanent.

   ~ Buddah

Happiness

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!

“Live the life you've dreamed”

  ~ Henry David Thoreau

I AM A FIGHTER

I've always loved this song for its phenomenal feel-good, tough girl, motivational lyrics and beat.  It's just the kind of song that should be offended by being left out, so here it is!

This song makes me think of my fight with my body.  It's a really difficult thing to realise that your body is not infallible; that it can let you down with such emphatic defiance.  I know lots of people who have coped with that in different ways, each has gone through (and is going through) his/her "fight" to get back to that thing we call normal (does it exist, anyway?!)

The reason I called my blog "out of the lyme light" was, obviously so the world "lyme" was in it, but because I really did feel, when I started writing and reflecting, that I was emerging as a different person from the person who began the journey.  I feel the same about dealing with all my shoulder issues and I think this song captures that idea - that when something bad happens, we can choose how we deal with it; and we can choose to let it break us; or we can choose to fight, emerging from the battle... or maybe the war... a different person - someone who has proven to themselves what they are capable of; learning new things about themselves; and using their newly found skills to help other people too.  Not despite it all, but because of it all.

"Fighter"

 Christina Aguilera

[Spoken:]

After all that you put me through,

You think I'd despise you,

But in the end I wanna thank you,

'Cause you've made me that much stronger

  *        *        *        *        *        *        * 

But uh uh, oh no, you're wrong

'Cause if it wasn't for all that you tried to do, I wouldn't know

Just how capable I am to pull through

So I wanna say thank you

'Cause it

[Chorus:]

Makes me that much stronger

Makes me work a little bit harder

It makes me that much wiser

So thanks for making me a fighter

Made me learn a little bit faster

Made my skin a little bit thicker

Makes me that much smarter

So thanks for making me a fighter

  *        *        *        *        *        *        *

I am a fighter and I

I ain't gonna stop

There is no turning back

I've had enough

[Chorus]

You thought I would forget

But I remembered

'Cause I remembered

I remembered

You thought I would forget

I remembered

'Cause I remembered

I remembered

[Chorus]

(As usual, I don't own any music/ videos etc. All linked to Youtube and artists accredited)

“Dwell in possibility.”       ~ Emily Dickinson