Mindful November

I had this plan to try to really focus on my blog this month. A project, a post a day - something to aim for, however small it may seem. My health seems to be dominating everything right now, and making it a thousand times more difficult to be even the slightest bit productive… or organised, or tidy, or really 'functional' on a daily basis.  It feels like I am either at some form of medical appointment, most often physical therapy; infusing my medications or flushing my PICC line; or sleeping.

I thought taking photographs would be an easier way to set a realistic goal, and then I came across this 'MindfulNovember' on instagram so adding a little bit of guidance and ready-made inspiration seems like a good combo! Plus actively employing some mindfulness everyday has  to be beneficial.

"Mindfulness is to keep our consciousness alive to present reality"    

~ Thich Nhat Hanh ~

It's October!

Really, October! I guess most people are well aware of that fact, since it's a very common and normal thing to know...plus shops are full of Halloween 'decor' and pumpkins, for those of us who do need a reminder since I seem to have 3 day weeks (physical therapy) & 4 days sleeping... or close enough! Time seems to just fly past, in one way. Some days do seem reeeeallly long. So it's probably not necessary to remind anyone else, but... my blog, my title, my reminder.... my exclamation mark! My:  'I can't believe I last posted in AUGUST!'

I really thought I would at least manage a blog post a week... then a month.... then, well I guess I slept a lot! (It's healing!)  I have had various ideas - mainly: I should blog with photos, it's easier. So I do have collections of photos from various things we've tried, along with a few stories and I'm aiming to 'catch up' to the end of October... by the end of October 😀.... mainly by organising and posting the assortment of photographs I've been planning to use.   Hopefully afterwards, I will actually manage to take advantage of my good days and engage a bit more !(Although good days are somewhat fewer right now, but I'm hopeful that means we are getting to the deepest parts of spirochaetal infection and pulverising the little Lyme-hell inducing buggers!). 

So, an overview of the past 3 months...

When I arrived here in May, we began 'deconstructing' my body and its somewhat obstinate, definitely obscure, health issues again. We made a plan (by that I mean I had about a dozen medical appointments) and we moved forward ... then we adapted, made a new plan and pushed on with that.... I blogged a few times about what we were doing and... now it's October!!

We kept going... made a plan, pushed on....then we stepped back, puzzled over some stuff, made a new plan and pushed on with that... then.... we remembered why the word plan has never really been the best word dealing with my body and its rollercoaster recovery. We 'decided' (like it was a choice) to go with my gut - which has been pretty damn good in this whole saga; it's so important to remember to listen to your body and trust your instincts when it's your body that you can feel.... screaming at you!

So right now, and for the past several weeks, physical therapy has been purely working with 'how I feel today'. There is no doubt that the ongoing IV Lyme treatment has systemic effects - it's going directly into my blood to target infection at the deepest possible level, and spirochetes can affect the entire body, especially when left to run (spiral/ drill) riot, unchecked throughout the entire body AGAIN - of course it's affecting everything!  


But my PT can "feel a difference" in all my muscles  (good side included) on weeks that the Lyme treatment affects me more (it goes in cycles). That wasn't really something I had thought about, but it's a HUGE validation of something usually only I can feel - most importantly,  it means it's working (torturously!).

So, I have continued to infuse Lyme medication every day, as part of my protocol (I have oral meds and some herbs & supplements too); I have continued to go to PT three times a week - sometimes I make it into the gym-area, mainly for some lower body strength training; other times I hardly move from the treatment bed while knots and spasms are worked out of my muscles; and dislocated ribs and twisted bones are eased back into place. (Yeah, that's fun.)

And so I continue on this path for now - things are so much better than at the beginning of the year - unbelievably so! - but they still have a long way to go. We have positive and encouraging signs that things are working. And I have complete trust in my 'team' of medical professionals here,  who offer such fantastic support - even after all this time.

The photos are more interesting, I promise. And coming soon....!

t minus 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

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  ~

t minus 18 days

I very much realise that there are people living in a far more hellish situation than I am; but right now, today, I am going through my own kind of hell.  My body is screaming at me again, but I am using every ounce of mental effort not to question that; to focus on the physical effort for now - persevering, determined to give this my best shot, to see if I can break through this pain barrier and create a return of 'normal' movement patterns.  But it is hard.  Today, my body is paying for being pushed to its limit at physio yesterday; but I have to keep at it and push it to its limit again today.  I genuinely don't know if it is "killing me or... making me stronger" but I have to work at it, give it time and effort before we will know.  So it does feel like working through my own, physical, hell - the pain is my hell and if working through it will get rid of it (even improve it slightly), right now, that is my incentive, my reason to keep going.

"If you're going through hell, keep going."

~ Winston Churchill ~

t minus 21 days

Well, I went to physio.  And not entirely under duress (unless you count my brain forcing my body out the door).  If I'm being entirely honest, which I intend to be this month, there is one image that overwhelmingly sums up today:

Definitely feel like I am working towards the impossible just now; so this quote seems entirely appropriate.  Really looking forward to the 'suddenly' bit.  He's a saint - he has to be right... right?!

Start by doing what’s necessary;

then do what’s possible;

and suddenly you are doing the impossible. 

~  Saint Francis of Assisi  ~

There's no such word as CAN'T in the gym....

Thinking about pain, physical therapy, surgery recovery, pain... again - it's hard not to think about it when you feel it 24/7, screaming at you above everything else; stealing your concentration and attention away from something thought ought to be infinitely more interesting and therefore effortlessly hold your focus; but the screaming from your body just never takes a break.  So….. I have been reading about pain; pain tolerance; pain threshold; pain scales.  Trying to learn about pain, and realising that as a chronic pain sufferer, I probably know just about as much as researchers know; from a different perspective, perhaps, but the point is I did not find any groundbreaking, life-saving solution to any of my problems.  Even trying to figure out what I should be doing - at what point is it good to push my body, but still let it heal? - doesn't have a simple answer.  So if nobody can tell me, how do I figure that out?  And how do I figure that out?

http://www.pinterest.com/gmun22/once-a-gymnast/

Finding the limit is the problem now...

 I'm genuinely beginning to think gymnastics - especially from a young age -  makes your brain form differently.  This is suspected (supported by a few studies) regarding learning a musical instrument; and research into bilingualism shows language learning definitely affects neural development.  I suspect starting gymnastics at a young age is a bit like learning a language.  If you learn a language before the age of ~7 years, your brain learns it as a first language - neural connections are formed differently.  I learned the language of gymnastics well before the age of 7.  Despite the fact I haven't trained or competed for 14 years in gymnastics, or 10 years in trampolining, those things don't leave you….. No matter how much you try!

http://www.pinterest.com/gmun22/once-a-gymnast/
(Typo not mine!)

  

The language of gymnastics [abbreviated]:

"There's no such word as can't in the gym"

"If you think you can't, you won't"

"Always end on a good one"

And things like this make perfect sense:

http://www.pinterest.com/gmun22/once-a-gymnast/

*"you're in the air"
Typo not mine... again!

Because that is how you get results: 

My last British Trios Finals 2001
(before I broke another bone & had to quit)

But now…...

"There's no such word as can't in the gym"

To physio:

"Yes, you can push my arm as far as you want... did I tell you my gum is bleeding because I'm biting on it?  Just saying…"

"Yes, I can do this - I can still see in front of me, it's only black behind me, so I'm fine."

http://www.pinterest.com/gmun22/once-a-gymnast/

"If you think you can't, you won't"

To physio:

"Yes, this is ok....... should I be feeling sick though?"

"Yes, it's going - how sore should it get before I stop you? It's beginning to sparkle now…"

http://www.pinterest.com/gmun22/once-a-gymnast/

"Always end on a good one"

To physio:

[Eyes closed, sweat dripping off me, breathing increased, heart booming, room spinning]: "But I didn't do the full set... I'm not finished...*Will this actually do more damage...? No? OK. Finish then."

*(Um, yeah I confess to doing this one on Wednesday - yesterday.  It was 'only' two more reps... out of a total of 5.... for a muscle that hasn't really worked that way for 43 months. I slept in the car on the way home.)

[Ditto]: "But that last one was terrible..... I'll just do one more." [Collapse on floor]

http://www.pinterest.com/gmun22/once-a-gymnast/

So apparently I have 'syncope without loss of consciousness' - that means fainting without actually appearing to faint.  This adds to the confusion - have I fainted?  Or not?
THEN WHAT DO I DO??!!

Lesson:

Physios do not count any of those as "cans". (Sometimes they shout at you, actually.  Nicely.)  'Trying' when it is sparkling or black behind you or you are seeing black dots; you can taste vomit, or blood; you are dripping with sweat after lifting (holding, really) a ONE pound weight; you can only do it if you close your eyes……..  do not count as 'trying' either.  They are generally regarded as doing too much and produce orders like "Stop. Now." or "Lie down….. Lie down NOW." or shouted to their interns - "get me a chair!"  and "get me water!"

In the gym, bleeding gums, spinning heads and feeling sick may be the norm; recovering from an injury is not the same as gymnastics. (Mantra: repeat ad infinitum.) 


Second Lesson 
[doctor/ physio attempting to enter my head]:

"If you worked really hard at training one day, you would take a rest day the next day.  This is like that."

"It's like anything: work a day, rest a day, work a day, rest a day…."

"If you were sore after training one night, you would take the next night off, wouldn't you?"

Umm……. I'm really trying, and I know what you're saying here…….. but I don't understand………..

Yup.  I think gymnastics skews your perspective on life.  It means we learn young how to work hard, develop great time management skills*; we are trained to demand perfection from ourselves - on top of a natural instinct; to never give up (and in our heads, we still think our bodies have the capabilities it had when we were teenagers).  Getting injured (severely) is not a good idea.  Physios and doctors - you will probably hate any ex-gymnast patients you have! (Also because we also know exactly how we like our ankle/ wrist/ knee/ elbow wrapped; what tape we want to use, and exactly where we want it...)

*Yes Mum, I know this does not apply to me right now....... I have good reasons! And I really do try!

Just for fun.... things that are not really 'normal' (apparently):
(All from: http://www.pinterest.com/gmun22/)

I'd kind of forgotten about this, but it didn't strike me as
abnormal until I read this on Pinterest.  Last year!

As do gymnasts!

I didn't realise this was weird until the first time we did a group project
at uni and everyone was kind of staring...

It's incredibly difficult to resist this.  Still.

                                     

This is not normal? I still don't understand.... it's natural!

A little nostalgia:

Yeah, see below!

What a feeling........!
(Yes, that's me.)

 And too true:

However, I also think - a little bit of that stubborn determination built in may just feel like it's saving you sometimes.

http://www.pinterest.com/gmun22/

‘The greater danger for most of us is

not that our aim is too high and we miss it,

but that it is too low and we reach it.’

~ Michelangelo  ~

Two years, Many Lessons

Two years ago today I slipped and fell down a few stairs, well and truly wrecking my shoulder.  Never for a moment did I expect I would still be dealing with the consequences today..... and, I now know (details for another blog entry) I'll be dealing with them for a lot longer.

The past two years have brought with them tears, pain, fear, worry, anxiety, stress, feelings of failure and inadequacy, doubt, and more.  They have also brought many positive lessons, so today I want to focus on those.

~ PATIENCE ~

 ~ STRENGTH ~

~ DETERMINATION ~

~ RESOLVE ~

~ PERSONAL GROWTH ~

http://pinterest.com/gmun22/

Rainbows

Enough said!

From My Pintrest Board

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!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Chaos

Tomorrow marks one year since my surgery.  When I look back over my blog, and my diary, to this time last year I was filled with such optimism - a sense of excitement that, finally, I was going to be 'fixed'.

It's really hard for me to compare then and now.  If everything had been the same, and I had still to make the same decisions, I know I made the right decisions and would make them again - without the surgery, I would never have regained the use of my right arm.  But honestly, I thought I'd be handstanding by now!

My case has been unique, at least... I suppose... my doctors tell me it is "fascinating" and "interesting" for them, and that they are learning from it so at least I feel it will help someone else with a complex case in the future.

And I am getting there, it was probably better that I did not know how hard it would be, how long it would take, or, worst of all, how much pain I would continue to have now - one year on.  But nobody knew how my body was going to respond.  And nobody knows how much of a part Lyme plays in recovery from surgery either - there is some speculation, but there is no solid scientific evidence that gives any proven information on possible effects.  It is easy to feel low, to feel I want to make faster progress, but I always remind myself that I would have made exactly the same decisions if I had to do it over.  And at least that makes me realise that even although I wish I was more in control of it all; I wish I could speed up the healing; I am in the best possible place I can be in, given the circumstances I had to deal with.  

At physio on Monday, I was complaining of increased headaches and neck pain and after a thorough assessment, Angelo said, "your neck's in the wrong place".  Great... another super-weird thing I've been told this year. He told me I am trying to do too much again -  a small improvement is exciting, but then trying to push it too much can have a negative effect.  Sometimes it seems never-ending, but all I can do is keep at it, work hard (as appropriately as I am allowed) and still give my body time to heal... which, it still needs lots of, apparently!  One of the hardest things is accepting that trying to do everything for myself is not the best thing for my body and accepting help with day-to-day things (as simple as filling or pouring a heavy kettle, even left-handed) is something I really need to do.  It is just so difficult to feel like I have to say "I can't do this" a hundred times a day.  I have always been determined and independent and I hate the feeling of failure and inadequacy that produces.  At the same time, I then have to go back to the advice I was given last year about thinking of resting as "enabling healing" and that (sometimes) helps.... a bit...

I saw this on Pintrest, and given my life over the past year has been chaos (physically, emotionally, actually I think in every way imaginable!) I am therefore hopeful that this magic little bit of wisdom from cyberspace is correct and great changes will come from this.

Gotta keep some hope...........

It also reminded me of one of my very very favourite quotes, which I used exactly a year ago too:

“You must have chaos within you to give birth to a dancing star.”

   ~   Friedrich Nietzsche