Tuesday, December 31, 2013

New Year

I have neglected my blog a bit over the last few months, but I plan to start writing much more regularly again.  Last January my song-a-day project really helped me through a rather bleak time of year, so although it may be a bit last minute, I am hoping to come up with something that I can write about this January too.

In the meantime, I would like to pass on a sentiment stolen from a friend's facebook page:

I could get all philosophical and argue that every tomorrow can be the first blank page of a new future, or a new journey, but of course it is especially at this time of year we think about it.  So to all my friends, both online and in 'real life', I wish you a good life story in 2014. 

Let's look forward with optimism:

“Dwell in possibility.”
   ~ Emily Dickinson

Wednesday, November 6, 2013

Backtrack: September, a busy month...

I'm really not entirely sure how it's November already. I think possibly because I slept a lot of October away - and now with the dark nights, frosty days and Scottish winter looming, I am absolutely wishing I could hibernate for the next few months!

As planned, (eventually) I made it back to Scotland for the beginning of September.  September was just a crazy-busy month - planning and hosting my sister's surprise hen weekend (the weekend after I got back), my sister's wedding, lots of catching up with friends and family, including some who had travelled internationally to be at the wedding........ AND then moving house at the end of the month - the day before my Mum's birthday this year (and despite my best intentions and attempts to not stress my parents out - especially after planning and hosting a wedding! -  with another house move, and my (slightly idiotic/ delusional) insistence I would to do it myself after they left, it was pretty apparent that wasn't going to work, so I was extremely grateful for ALL their help).

I think that could be considered a busy, stressful, tiring month for anyone, so I definitely crash-landed back home. I'll leave the health talk for another post.

Overall, September was a month full of celebrations and they do say a picture is worth a thousand words... So, to save about 22,000 words, here are 22 photos!

Hen Party

Jill's surprise 'Hollywood Hen Party" at the wonderful Crieff Hydro Hotel

*          *          *          *          *


The Munro-Milligan wedding, at The Vu (near Edinburgh)

In a very kind gesture by my sister and her new husband, in lieu of favours at their wedding, they chose to make a donation to a UK Lyme Disease charity - personally I think it's a wonderful idea, generally, to consider a donation to a charity for that purpose, and it was very touching that they chose to donate to a Lyme charity because of my journey. Thanks :-)

“Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”

       ~  Buddha

Saturday, August 31, 2013


I'm a little behind here, so going for a few summaries to update my life. This was written at the end of August.... 

Well.... so much for attempting to post every day.  Rather like the month of August, that feels like a failed attempt.  In fact, if anyone creates time travel in the next few hours, I would very much like to go back to the beginning of the month please....

Given my complete inability to summarise, I am still going to attempt it.
  • August was supposed to be 'packing and organising' month
  • Organising really involved making sure I saw all my doctors and was up-to-date with everything prior to leaving for Scotland
  • This started off ok.....

  • 5th August:
  • I had my "dynamic neuromusculoskeletal ultrasound scan"
    • This needs more discussion ... for another time, it was a very cool, new way of looking at what is going on in my muscles/ nerves/ soft tissue as my arm moves
    • Basically, my nerves are covered in scar tissue; being compressed with movement and swelling (hence the numb/ burning hand) and it showed signs of lots of damage to all the tissue - nerves/ muscles/ ligaments/ tendons/ fascia etc. in the area
    • This visually confirmed the diagnoses of Thoracic Outlet Syndrome and Brachial Plexopathy
    • Upshot is:
      • Nothing will heal until nerves heal
      • Nerves need time, rest (and patience) as they heal at a rate of 2mm (yes, millimetres) every 4-6 weeks
      • I still have a long recovery ahead of me; doctor estimates 2-3 years until my arm is "functional"
    • Good news is:
      • I do not have an inexplicable pain syndrome and can stop researching ketamine comas now
      • My pain has been 'visualised' - I SAW it; and saw it compared to the other side; it IS real pain, with a REAL physical cause and can now be very specifically pinpointed
    • Bad news is:
      • Nobody knows if my right arm/ shoulder will get better, will gain full function again, or to what degree; nobody knows what my pain will do, if/when it will improve, or by how much
      • I am not the most patient person..... give me a hundred exercises to do every day and I can happily (even through those tears) work on that; give me some simple, gentle stretches to do "only on good days" and I'm not so good with that... (Doctor: "when you were training at gymnastics and you had a tough night in the gym, you were sore afterwards, you'd have a day off the next day, right?" Me:"..... ummmmm, I know what the answer to this question should be....")
    • Plan/ Advice:
      • Adjust lifestyle accordingly
      • Healing is the most important thing
      • Try meditation (I'm still trying.....!)
      • Use pillow part of sling so that weight of arm is not pulling on nerves
      • Exercise, but do not raise pain level in doing so - e.g. if the pain is always a 5/10, do not push things and spike to a 6 or an 8
      • Use various modalities to try to stretch out all the scar tissue that is 'binding me down'
      • Drink lots of (good) green tea.... super super super anti-oxidants, apparently.  I think I actually like it now. I even made citrus infused iced green tea - this actually tasted a lot nicer than I thought it would!
    • Success(ish):
      • 'Swimming' in a heated therapy pool
        • I can (kind of) do this.  It gets me the best exercise I have found, as there is no weight from my upper body.  I can doggy paddle and float on my back..... baby steps.
        • I CAN however, somersault underwater - that was the most fun I'd had in AGES!!
      • Steam room - heat helps break up scar tissue with gentle stretching

  • 6th August :
  • Just as we were about to leave for another of my appointments Mum fell downstairs... 4 days before she was due to fly home to Scotland
    • She slipped on the 3 bottom wooden steps, kind of arched her back as she fell, so hit lower back then shoulder and in that split second where you watch to see if someone is going to get up, or not, she started crying out
    • This was not good
    • I was home alone with her and really felt I was not much help (physically) - I couldn't help her off the stairs, but did manage to get ice, pillows to support her and call a friend, my Dad, and then when things were definitely not improving, 911
    • EMTs and Paramedics (I guess from Kimberton Fire Company and then associated with Phoenixville hospital) were fantastic
    • She did go to hospital strapped to a backboard, with neck-brace on, in the ambulance
    • Diagnosis: Badly bruised ribs (told this is not really different from strain/ sprain/ fracture and had to delay her flight in case microscopic fragments of bone came loose with the change in air pressure
    • She was in agony, in bed with strong painkillers for a few days, but started physiotherapy very quickly with a lower back specialist.
    • I am pleased to say that she has made a REMARKABLE recovery - still has some twinges and spasms, and has to be careful with how she sits and things like that, but she will definitely be dancing at my sister's wedding next month!

  • Same day, I had my appointment at Penn with the specialist physio I see; very kindly, our friend took me (she was such a wonderful help)
    • He was very interested in the new scan, the paper that Dr F has written (first paper on diagnosing Thoracic Outlet Syndrome with visual confirmation - published in May) and showed me his notes from my first appointment with him where he had written "brachial plexopathy".  I never doubted he was right - but nobody had the tests to prove it.
    • My shoulder function is now at 20% of a 'normal' shoulder.  That's 5 points increase in 11 months.  12 points increase is significant.  He is not happy - frustrated that it is not going faster (not frustrated at me), but I am trying (very very hard) to focus on the fact that is is at least heading in the right direction..... S-L-O-W as it is.

August kind of split into 3 parts:
  • Before Mum's fall - trying to get things organised (where her biggest concern was how many pairs of shoes to pack)
  • After Mum's fall - where things kind of stopped, time seemed to freeze for a few days,  Dad had to take time off and try and help, and I tried to do more, but had had a week full of sore appointments, so I was pretty sore and tired, so not very helpful, really.  At one point my Dad was going to make tea, I said I could do it, I was going to get some too....  "And how do you plan to carry two tea cups upstairs?" Ummmmm....
  • Then, After Mum Left although, to be honest, I could also call this After My 'Incident'...
Mum left on 17th - a week made a huge difference to her, so we were all delighted to see her improve so quickly.  And very relieved.  It did, of course, bring up many strange comparisons between what I did - a simple slip, gradual building pain and causing so much damage; and what she did - seeming instantaneously horrific, but getting better relatively quickly. I genuinely was just delighted to see her make good progress so quickly - it was quite a scary thing to watch, and to deal with as well.

With Mum away, and Dad working, I have to drive myself to my physio appointments etc. now. I've been driving for a couple of months, I have adapted so that I am doing it with pillows supporting me, and... well, my physio did say "people with one arm can drive, you should be driving" - so ok from the physios, doctor and insurance company (and passed my mum's little driving test!) and I'm ok with short journeys - in an automatic (i.e. no gearstick to drive with).

My 'Incident'

The Monday after Mum left, I was driving to physio and my back started to spasm, with the pain travelling from under my scapula around my ribs. Uncontrollable, squealing out loud in the car-type pain.  I really don't know how I got to physio; it was a very conscious "not long now", "breathe... count your breaths..." - I was probably talking to myself.  I made it to the clinic, collapsed on the front desk and was helped through to a private room, given some ultrasound with my medication, and laid on ice and TENS for a good hour... maybe two hours.  When I was numb enough, the pain was under control, and I felt ready, they let me drive home.  Looking back, it all seems a blur.  I know I was there, I know I couldn't stop sobbing, I had no idea what was happening, but it was agony.  The next few days saw packing completely abandoned, and I was back in bed with my ice machine... no packing and organising happening as planned...

I saw my orthopaedic doctor here a couple of days later and he has diagosed a strained muscle in my ribs. Great.  He was actually more excited about the movement in my scapula(!) - having not seen me since he took out my staples.  Even although he said it is completely abnormal and movement may never be normal, he was amazed to see it actually moving at all.  I guess I am so immersed in this now, that I forget how new and amazing this really is.  The muscle pull could have happened any way - Dr said people can do it sneezing, or coughing, but it is throwing the rest of my ribs out (not that they needed another thing to help them dislocate themselves...).  So my right rib cage is in entirely the wrong position - and seems to be moving more each day - , scar tissue seems to be breaking up a bit because of it, and it kind of feels like I have a back-brace on, inside me,back to front.... my flight home has been changed to Sunday 31st now, and I am planning just to take all my painkillers and hope I sleep!

And............ in between all that, I have been attempting to pack my life into 3 bags and decide what I really need - HOW have I accumulated all this stuff?!  Let's just saw it's a slow process..... pack for 20 minutes... ice for 20 minutes.... lie down a bit longer... wait on drugs to work.... pack for 20 minutes..... 

And really, that's been August!  Think this says it all.....

Very busy.... trying very hard!!

Sunday, August 4, 2013


Well, it's been a while.  Not because I haven't had anything to say, but because when I start writing, I really don't know where to start and when to stop with everything that has been going on lately.

August is my last month in the USA, and a difficult time in many ways as I know some pretty big challenges and changes lie ahead; so I am going to try to blog more, daily if I can manage it, to update things, help me focus on the positives, and to help me keep things a bit more organised inside my head...

However, as usual, it is 3.17 am, I am not asleep and it is this time when it feels like my brain comes alive.  I have  journal called "I can't sleep" (It's from this company HERE.

(Inside the journal the copyright states that "brief quotations embodied in critical articles and reviews" can be used without pre-obtained permission; so I intend this to be considered a review and critical article that discusses the journal, journaling, and insomnia.)

This is the journal:

Personally, I think it is fantastic.  My mum got me it for my birthday.  It is also filled with famous quotes (and now many of my own thoughts) from famous writers, philosophers, world leaders and others, many relating to sleep.... or rather, the lack of it.

Tonight I have picked my very favourite quote, from Dostoyevsky: "To be too conscious is an illness - a real thoroughgoing illness." I think I might take that page to my doctor.... I am definitely "too conscious"!

One of my favourite Scottish authors,  Alexander McCall Smith, often writes on his own facebook page. He gets up in the middle of the night to write, then goes back to bed when the sun comes up. This made me think about him:

"You never have to change anything you got up in the middle of the night to write." - Saul Bellow, a nobel-prize winning novelist.

Personally, I love this next one, as it conjures up ideas in my mind of all these thoughts simply floating about, looking for a conscious mind in which to enter and be realised: "Nighttime is the best time to work.  All the ideas are there to be yours because everyone else is asleep." - Catherine O'Hara

Att the beginning of the journal, there is some information about insomnia and it says "we sleep only when we need to and are awake when we're most productive."  Well, I sure as hell am not productive during the day!  So I'll definitely take being productive in the middle of the night.... it has to happen at some time - right?!  And lying in my bed writing definitely counts!

It also goes on to say that Marcel Proust and William Shakespeare wrote when they couldn't sleep and that Winston Churchill, Benjamin Franklin and Napoleon Bonaparte were famous for "conducting their affairs in a sleep-deprived state." I have also read in various places that Margaret Thatcher never slept for more than 5 hours when she was prime minister of the UK.  

As my insomnia as plagued me over the past few years, I have read more about it and discovered the world of chronobiology - the study of sleep and circadian rhythms which currently holds that we all operate on our own body's natural cycle - some of us are naturally night owls, some are larks (morning people); some of us may have a 24 hour cycle, but others may have a cycle that veers entirely away from what we, culturally, consider to be 'normal'.  Another 'listen to your body' piece of advice.  Funny how that makes so much sense in every context...

It also says "journaling" is highly beneficial and claims studies have proven that "physical benefits include stress management, strengthened immune systems, fewer doctor visits and improvement in chronic illnesses such as asthma..."

I wonder if blogging counts as a form of journaling... I do both, and have kept a journal or a diary since I was a child.  The intro also says journaling, "forces us to transform the ruminations cluttering our minds into coherent stories..."   Not only do I love the idea, but it's such a beautiful and eloquent way of wording it.  Plus 'ruminations' is definitely one of my favourite words.

It goes on to further explore the idea that writing your thoughts in a journal when you can't sleep "can be seen as a way of organizing the conscious stuff floating around your brain..."

Personally, I quite like the part that says insomnia "could just mean you are smarter than the blithely snoozing masses and have more to say than they do"!  I doubt anyone would disagree that I talk way too much!  It also goes on to say that apparently "studies have found that night owls are, in fact, more intelligent and have better memories than early risers."  

Perhaps this is just to make all the readers feel better about their lack of sleep... But perhaps I should not complain about my insomnia and embrace my enhanced creativity and capture all those ideas that seem to appear out of the darkness - in all honesty, the only reason it bothers me is because everyone else seems to operate on a different schedule!

I often tell people (really, I mean doctors) I don't have a problem actually sleeping, it's more the falling asleep and waking up (at a specified time) that cause me problems.  Sleeping when my body wants to sleep is very peaceful!  However, having given up my sleeping tablets, as my tolerance increased and they were not working as they should have; forcing sleep is close to impossible, and so as daylight appears and the birds start to sing, I usually begin to feel sleepy... ear plugs and an eye mask a necessity.

And now, as the cicadas have gone quiet and the birds are beginning to sing, I will quote the last quote in the book and hope sleep is soon forthcoming: "... and so to bed." - Samuel Pepys.

Good night!

Wednesday, June 26, 2013

Recovering from shoulder surgery: the BRA conundrum

This post is inspired by a search that showed up on my blog stats this week, and was something I have had to think about a lot over the past two years, but especially since my surgery....

Inspired by a search from google: 
"how to find the best bra for after shoulder surgery?"

This is a real issue! Since I have thought so much about it this year, and other people are obviously looking for the information too (and I've searched myself.... with not much success), I figured it was worth an entire blog post!  Finding a good, comfortable bra is never easy anyway - add in any kind of injury/ pain/ shoulder problems to the affected area and it's an entire bra minefield out there!

I can count 16 doctors and 5 main physios/ shoulder therapists I've seen specifically for my shoulder.  ONE of the doctors was female and ONE of the other therapists was female (and both were pre-surgery).  So, basically, the majority of my shoulder-specific, surgery-specific, and post-surgical care and rehab has been carried out by males..... most of whom, I am quite sure, would have no clue as to the best answer for this question!

To get a bit personal first... I actually lost a LOT of weight between my injury and surgery (mainly from the pain related nausea/ inability to eat, plus stress on my body, I guess) and was borderline underweight with a size 0 being too big at the time of my surgery.  At that time I was wearing soft lacy-strapped tank tops I could step into (nothing tight could go over my head).  I am very grateful that I didn't have to worry about the bra issue until a few months after surgery when I - healthily - started putting on some weight and getting a little shape back again.  However, I think I have bought 6 different styles of bra in that time - all of which have helped (or hurt) at different times.

My main requirements, at various times in the (ongoing) healing process:

1. no metal digging into my spine or shoulder blade

2. no wire digging into my ribs, or the lateral side of my scapula, or under my arm

3. no straps, or very very very very soft straps (and no metal bits in the wrong place)

4. or (some days) racer-back straps - depending on what part of the shoulder is sore (or the sorest), these avoid touching the shoulder blades and come closer to the neck rather than putting pressure on the actual shoulder capsule

5. no seams, or squares of thick material sewn together and digging into my ribs/ scapula/ shoulder

6. Something I can fasten myself!!

..........a) something I could initially step into,  then progress to putting over my head - no crazy reaching behind my back, or attempting to 'swivel' one-handed!

.........b) a front fastening - no crazy impossible reaching or swivelling required

..........c) no fastening - even better (e.g. bandeau style)

7. very adjustable straps...... perhaps not the best look for every shape, but definitely necessary to ease pain levels/ increase comfort levels either throughout the day, or on bad days ........ ideally without metal bits that dig into you anywhere - don't think I solved that conundrum really... just finding the right spot for the adjustable sliders has worked for me.

Bra #1: The ultimate in comfort
My favourite, definitely, has to be these rather shapeless, racer-backed, but wire-free, seam-free, can-step-in-and-out-of-them, don't-even-have-to-wear-both-straps by "Barely There" (note: it may say you can wear them strapless -this does not work.  Except maybe for 5 mins in a doctor's office to display your shoulder blade; but not under a dress where it may shimmy its way down to your belly button.  Lesson learned, lesson shared!  At least I had the dress on....!)

For anyone reading stateside, they come in a two-pack (the model has two on) I have found these at Macy's, at Kohls, at a Bali outlet, but even better - at half the price: "Barely There for Target" - exactly the same ($16 for two)!  They come in lots of bright colours, are extremely comfortable and are also less revealing than most bikinis, so being asked to strip off your top in a doctor's office really doesn't feel as embarrassing (although I think the more times you have to do that, the less embarrassing it becomes anyway....) - and as I said earlier, you can take one or two straps down, revealing a full view of your shoulder blades while keeping yourself covered and secure! 

(Just don't put them in the tumble drier - they WILL unravel and they WILL tie every single other thing in the machine together until the only solution is scissors. And a trip to Target.)

Anyway, those are my favourite and are comfortable to sleep in too, especially when weak muscles need support to stop any pulling causing extra pain. My only complaint with these would be when neck muscles get tight, then I give them a break for a day or two and opt for.....

Bra #2: the shaped bandeau
I went through a strapless phase for a while when I found any kind of strap pulling tightly on my shoulders to be painful (the strapless phase still resurrects itself when my neck pain increases and the racerbacks irritate it a little). I bought a couple of "Charmed" brand strapless bras from Macy's - with detachable straps, (so one strap could be added if necessary).  These ones don't have a clip at the back - so no metal to dig in to sensitive vertebrae; can step into it or get it over your head (if you can manage that) and it has a little more shape:

(Image from here)

I can't seem to find them on Macy's website, but I have definitely seen them there recently and also in a Maidenform outlet (yeah, we have a great outlet mall very close by...)

Bra #3: the totally strapless bandeau
The other bandeau-style I like is by American Eagle's "aerie".  It's a bit tighter around the top, with no strap options, so on days where I have some inflammation I prefer not to wear it, but generally it is very comfortable and stays in place very securely - moreso than the "Charmed" one (although neither of these have ever managed to slip down to my waist!).  Plus, it comes in very cool colours too...
(Image from aerie)

Bra #4: the 'some tops just NEED a 'real' bra

This one fits some of my criteria, but is definitely not an all-day bra for me right now.  Honestly, this is probably because of my rib involvement, so for someone with 'just' shoulder issues, it might not be an issue.  It is strapless, racer-back, front fastening, and has a bit of shape.  It does have little metal adjustable clips, but because of the racer back, these can be positioned in a way where they don't affect the shoulder blade at all. The lace is very soft and means the 'tightness' from a single strap is evenly distributed - much more comfortable.  My only problem with it is that it has thicker squares of material where the edge of the underwire would be and this presses on a sensitive rib 'trigger point' of pain for me.

(Pic from Maidenform. not the best but it shows it from the back... 
for the 'sexy model-in-a-bra' photo, click on the link)

Bra #5: the 'some tops need normal straps' option

Also from Barely There (appropriately named, I guess!) I have found this one to be the most comfortable when I need non-racerback straps.  For me, this means the 'normal' straps do go right across my scapula, which is still super-sensitive, so this is the most comfortable option I've found.  It does have a normal back closure and I probably couldn't have managed it for several months after my surgery, but my right arm can contribute a little something to that 'swivel' now, so it does work!

(Image from Barely There)

Bra #6: Intelliskin sports bra
My newest purchase.... I decided to purchase an Intelliskin zipper sports bra to see how it compared with the T-shirt (which I posted about here last year).  The T-shirt is helpful in supporting my rib pain, but it is still very difficult for me to get on and off - I can do it ALL BY MYSELF NOW!! - but it is pretty awkward, and it is very hot for summer.  The zipper collection came out after I already had my (complimentary - lucky me!) T-shirt and I decided I'd try the sports bra for the summer.

(Image from Intelliskin - there are better images of the back on their website, 
but it wouldn't let me save them)

I've only had it a couple of weeks and the instructions say to wear an hour or so a day initially to let your body get used to the posture and the muscles it supports and stimulates (more info at Intelliskin's website).  This was ordered specifically to help my scapula stay in the correct place, so it's going to take a while for it to get used to feeling different - it's been so used to being in the 'wrong' place for so long, and my muscles really don't know what's going on, so I am taking it slowly (both on medical advice and the 'listen to your body' advice). I do find the elastic strap begins to push in at my ribs (on the sore points) after I've had it on for a while - that will be something that will improve with time.

In terms of bras, I think it meets all my requirements - no metal bits, no uncomfortable straps, no metal to dig in, front fastening, no wire, and no seams that dig in, but it's definitely a full-coverage sports bra (which is what it is designed for).  It is very tight, so it feels like good support right across my back, shoulders and front, but that also means the zip is very tight - I can do it now, although it is still a bit of an effort, so it would definitely have been easier than the over-the-head option last year, but I might have needed some help with the zip.

I do feel when I am allowed to increase my exercises, it will be much more beneficial - at the moment the idea is it is 'helping' my body know the correct position to be in, and assisting with that while I do my very minimal exercise regime.

For anyone wondering about sizing - I am on the small side of the small measurements they give on the site, and it is a very neat (probably perfect) fit on me.  I did wonder about getting the extra small but I made the right decision, so I'd say they are quite small-made.

Also - an important factor (for me) is that all the bras above are not a chest measurement plus cup size - this makes them much more flexible for adjusting/ tightening/ loosening in response to pain as it gives them a bit more flexibility of fit and less rigidity.

SO.... to any men who made it this far - betcha never knew how complicated that could be!

I do hope that somebody somewhere finds the help they were searching for.... the help I couldn't find when I searched before.

And I'm not sure whether this entire post is actually helpful or crazy, so this seemed perfectly fitting:

~ Marilyn Monroe ~

Saturday, June 22, 2013

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.






Monday, June 17, 2013

Meditation Failure

I can't believe it's halfway through June! The last few weeks have been rather eventful, shoulder-wise.  I keep thinking about writing a blog post and then I really don't know where to stop or start... I'll try to update a bit soon... lots happening though, some not so good stuff for a while, so I am trying some new things.  One is seeing a chiropractor, Dr J - as it seems one of my ribs has been out of place and causing a lot of my pain.  The adjustments are temporarily agony - but just for a split second, and afterwards it does help my pain... also only temporarily though....it's complicated, so perhaps a post on that will come later.  Dr J also has a heated hydrotherapy massage bed, which is my new favourite thing since my new acupuncturist has recommended I stop using my ice machine... which I was seriously addicted to - and made no secret of that.  I feel a little like an alcoholic counting how many days without alcohol - it's been 13 days without ice now......

Dr J has also tried me on "guided meditation".  I told him I would be terrible at this, but I am trying everything and anything thrown at me so here is how the first 22 minute session went: 

(I have noise cancelling headphones on through which the 'calming' voices play and my eyes are closed, but with dark glasses on which flash coloured lights at different times.)

"Imagine you're on a beach"

Ok, favourite beach I've ever been to.. hmmm... I liked a couple in Australia a lot (played them through my head) decided they hadn't been that hot when I was there so went through a couple in Florida, then decided Grand Cayman was definitely my favourite, ok, I am lying on seven mile beach in Cayman... oops, missed what I'm supposed to do next...

"Imagine you are meeting your future self, 5, 10, 15 years from now"

Wtf? I'm supposed to be dealing with things on a day to day basis here - that's what everyone has been telling me ALL year.....one day at a time....  I can't imagine that....*panic!*...  missed that next bit....

"Imagine where you live, what kind of car you have....."

How is this meditation? Isn't that a bit superficial... I actually don't care about cars.... why should that matter? Oops.... missed another bit...

".... imagine walking into your hallway"

Ok, I can do this, I'd like a glass atrium with tropical plants.... a big palm tree, maybe a banana tree....it would be so cool to grow my own bananas....what other tropical plants are my favourite... oops..... pay attention"

".... Imagine where you see yourself living... Where in the world you would like to be.... What...

Ooh, where would I live if I could live anywhere (run through a dozen countries in my head).  If it was somewhere tropical I could grow bananas outside... I'd definitely pick somewhere tropical.... maybe...  I'd really like a fruit orchard, just a small one... Just think how good everything would taste right off the tree... Hmmmm where would I live? Actually, I think I'm supposed to be thinking of something else now.....

"blah blah blah"

I wonder why the blue light is being flashed into my right eye?   I wonder if it's because my left eye doesn't see as well or if it's supposed to have some neurological effect....  I wonder if it's like the binaural beats thing where it's supposed to induce specific brain waves to make your brain relax... Actually, the binaural beats do that much better, they just make noises, they don't make me think so much.... hmm... maybe if I squeeze my right eye shut tighter, I'll see what the left eye is supposed to see.... (tried it, eventually opened my left eye to see no colour there, felt relieved my left eye is not getting worse.... missed more of the guided stuff)

"Imagine you could go back in time and change something... What would you change?"

Right now?  Well, since the chiropractor has just tortured me by putting my rib into place using his 21st century rack because my muscles are unable to hold it there now and it seems to be pressing my scapula out of place, clearly the first thing that flashes into my head that I would like to change is that I would not have grabbed on when I slipped on the stairs... Actually, if I can change anything, I suppose it would be not falling at all.....

"Imagine what you would say differently, how you could take control of the situation and change it....

Ok.... Clearly not thinking about the right thing here....

"Imagine how you would replay that event in your head as a black and white movie, letting it go far into the past and letting go of it....

Well,  I've done this wrong.... (try to change my thoughts, realise it's too late and now the only image in my mind is watching myself fall downstairs on a black and white TV set... Which really takes on more of a slapstick effect than I think it it supposed to).... Oops.  Again... Pay attention....

"You are in control...

No I'm not, control is an illusion; nobody's in control, we just think we are until something happens and we realise we're not... Einstein said reality was an illusion... Stop thinking philosophically.... rein it in....  Try harder....

"You are in control of everything that is happening to you...

This is crap.

"You can make it all different by deciding you are going to take control of your situation, leaving the past behind you and moving on to the future you envision for yourself.... It is as simple as making that decision...

No it's not.  That's what I've been trying to do for nearly 2 bloody years now.... well, 8 actually if you count everything...  If it was that simple I'd be doing somersaults again.  Make a decision - go to uni, work hard, have surgery, work hard, go to physio, work hard - I've done that.... I've done that until I've cried and nearly passed out with pain.... I do my exercises every day, despite my pain.  I am TRYING to be in control but it's really not as simple as that.... Wouldn't it be great if it was....?  HOW is this helpful...??

"All your problems are behind you..."

Yeah, I really wish they were... But that's kind of why I'm here....

"You can move away from your problems, away from anything that is holding you back....

Well unless you've created some magic thing that lets my consciousness live outside my body right now, that's really not true....  I wonder why the flashing lights are getting faster.... I wonder what that's supposed to do.... it's very bright blue light, I thought that was supposed to wake you up, not soothe you.... I wonder if it's supposed to induce specific brain waves... I think it's delta waves that are supposed to calm you....I think that's what the Buddhist monks achieve through meditation... I must look that up....

"imagine yourself calm, relaxed, let go of any tension... (then two voices started speaking at once - that in itself is not calming.... one was talking about calming thoughts and the other one was talking about negative emotions)

This is weird, I wonder if I'm supposed to be paying attention to both... most people can't really listen to two things at once... I wonder if this is supposed to be subliminal... I remember watching old subliminal adverts before they were banned, I think that was at primary school... They were cool.....I wonder what voice  is supposed to be subliminal... Or maybe I'm meant to pick one to listen to....hmmm....  It also reminds me of that mobile phone advert that used to be on Classic FM before driving and using phones was banned at home.... oops, pay attention...

"If it is an appropriate time for sleep, you will feel yourself falling asleep, peacefully, with no stress and no problems...

It's the middle of the afternoon and I'm in a chiropractor's office... Am I supposed to fall asleep?  I'd rather fall asleep back on the hydrotherapy bed... It's amazing.  I wonder how much they cost... I wonder if you can rent them.... I must look that up too.... Ooops, again.... Pay attention....

"If this is not an appropriate time for sleep you will find yourself feeling awake, and lighter and free from the stress that surrounds you... Full of energy....

If I WAS supposed to fall asleep, wouldn't this wake me back up again... ?These seem very contradictory.... if it is subliminal and subconscious, how is my brain supposed to know what one to listen to.... Also, lighter and free from stress... I've just been told it's normal to be really sore after my adjustments and I generally feel beaten up afterwards...... Ok, it's finished... 

Well, that was a long 22 minutes...

So.... meditation + Gail = big failure! Although strangely I did sleep well that night.  I'm not sure if it had to do with the meditation, or the fact that I'd had 7 hours of sleep out of about 60 by that night....

I'm torn between two quotes here, I think they both apply.... one perhaps more meditation-y, the other definitely more fitting:

“You must live in the present, launch yourself on every wave, find your eternity in each moment.”
“This world is but a canvas to our imaginations.”

  ~ Henry David Thoreau

Monday, May 6, 2013

Chronic pain: golf balls, marbles, pebbles & sand

I saw a quote on  website recently that really made me think. It said:

"my life is full of pain"

I stared at it for a while, even kept the tab open for several days, going back to it every now and then and wondering what I really thought about it.

I thought a lot, so bear with me...

It made me think about this story that, throughout the cyberyears, has appeared in my inbox many times and (more recently) has popped up on various types of social media. True story, or urban myth, I like it.  It goes something like this:

A professor is giving a lecture to a large group of students.  He starts the lecture by holding up an empty jar which he then fills will golf balls.  He asks the students if the jar is full; they reply yes, it is full.  Then he opens another box on his desk with marbles inside.  He pours some marbles into the jar, watching them fill the gaps between the golf balls.  Again, he asks if the jar is full. (I'm hopeful here that being university students, they would see where this is going and not answer yes here, so in my version they're going to just watch expectantly as he produces another box.)  It contains tiny pebbles (I personally imagine these to be like ones used in a fish tank) which he pours into the jar and they trickle into the gaps between the golf balls and the marbles. At this point, the jar appears to be full, and there are no more boxes on the table.  He asks the students again: is the jar full? He then reaches into his desk drawer and pulls out a bag of sand. He slowly pours the bag of sand into the jar, watching the tiny grains fill every crack and crevice between the stones, marbles, and golf balls.  Now is the jar full?  At this point, the students agree: yes, the jar is full.  The professor, however, has one last trick.  He produces a bottle of beer from the drawer, opens it and pours it into the jar where the liquid is soaked up by the sand.

The analogy (in the version I have seen) is that the jar represents life.  The golf balls are the most important things in your life - friends, family, pets, health, people you care about and have a responsibility to.  The marbles represent other responsibilities in your life such as work, studying, volunteering or other important commitments.  The pebbles represent the smaller essentials - a social life, relaxation, hobbies - whatever is required for some 'me' time to keep you sane(!).  The sand is everything else - errands, tasks, bills, worries, stress - somehow, these things will fit in somewhere.  In the version I read, at the end one student asks about the beer.  The professor replies that no matter how busy your life is, there is always time for a beer with a friend.

I've always liked the analogy.  Strangely, being ill for such a long time, and being away from a 'normal' reality during a time when most people are just throwing themselves into it (i.e. our twenties), has given me time to really reflect on the important things in life.  So breaking it down visually,  I think, is very effective at making people really stop and think about what is important, and realise that you can alter your perspective, and your priorities, depending on what way you look at your life.

However, the quote at the top of this post made me think about this analogy differently.  I think it can also be used to explain chronic pain (or, by extension, any chronic medical condition).

Pain is a horrible thing.  Everyone knows that.  But most pain is transient - even the pain of a broken bone, or childbirth, is temporary, however painful it may be at the time; the searing agony of stubbing your toe is over in seconds; the sting of a papercut always feels like the worst thing ever when it happens (or when you get lemon juice or alcoholic hand sanitizer in it later!), but again, after a day or so, it's healed and forgotten about.  Emotional pain, depression, or severe anxiety, are harder to make comparisons with, as everyone has very different personal responses to different situations, or to internal emotional pain (although physical pain is highly subjective too); but I think the analogy has relevance here as well.

Chronic pain - physical or emotional (and/or both, as they can be inextricably linked) - is impossible to truly understand without experiencing it.  It is wearing, exhausting, draining, energy-sapping, emotionally challenging.  It can be mind-freezing, gut-wrenching, pillow-biting; for me, it has rendered me speechless, breathless, sobbing, nauseated, dizzy, light headed, faint, crying, moaning, whimpering... at its very worst; and at all times, a dull, constant, heavy ache - like another, heavier, body, attached like a magnetic imaginary twin, permanently pulling you down.

At my last specialist physio appointment, I decided it would be helpful to 'draw my pain', to map it out and visualise it - I thought it would be simpler than spending an eternity trying to describe all the facets of it.  Here are my drawings:

Left: Right scapula pain: top drawing - looking at the scapula from the back; bottom drawing - looking at the scapula from the front (as if you can see through the chest); Right: drawing showing pain in spine and ribs - as if looking from the back. (The colours correspond with different types of pain, explained in the colour-coded descriptions.)

To be honest, I'm not entirely sure what my physio made of it.  I kind of got the distinct impression most of his adult patients don't hand him pictures they've drawn and coloured especially for him...  He studied it silently for several minutes (as I quietly wondered if I'd crossed a line and might require psychiatric evaluation) and came to the perfect conclusion: "It's a mess.  Your shoulder's still screaming at you and everything hurts." In a nutshell.  But he kept my drawings.

So, back to the quote: "my life is full of pain".  Most of the time right now, I feel like my pain dominates.  No matter what I do, however much I (usually) enjoy it, or more typically right now, force myself to do it because I do (I WILL make myself) enjoy it - the pain is still there.  It can be ferocious, overwhelming, sometimes it hits me like a freight train - one minute I can be making lunch, the next minute I'm sitting on the kitchen floor, watching the black stars sparkle above me, sweating, and wondering exactly how I got down here (again).  The hardest thing for me is not knowing when that freight train is coming - sometimes it can be a tiny movement that I'm sure I did a dozen times the previous day; others it's fatigue - when I just push my(stubborn)self a little bit too hard; or try to do a little bit too much in a day.

And, yes, it's frustrating, it drives me crazy, I wish it would just simply disappear; sometimes I cry with pain - still; other times, with sheer frustration. But despite all that - and I've described it as much as possible to really make this point - despite all that, I would NEVER describe my life as being filled with pain.

Back to the analogy... Some days, the pain is in the golf balls - these are the worst days, where the pain is big, angry, dominating, and getting in the way of everything else; but on those days I still have space for some marbles and pebbles - emails from friends, that always cheer me up, a good TV show streamed online, some chocolate, and perhaps rather unhealthily (but unfortunately necessary) my concoction of pain medications and topical pain creams and gels... and my life-saving ice machine.  The sand - as in the life analogy, the annoying things are not priorities on those days, bills, emails, whatever I have to do, it can always wait until tomorrow.

(This should always go without saying, but my Mum is always a golf ball - the most important thing to me on bad days and good days, and a constant presence and support throughout.)

On other days, the pain is the sand - allowing me to enjoy the big things a bit more, but - rather like when you go to the beach - the sand still finds its way into everything!  But, if you go to the beach, you're going to get sandy... it doesn't stop you going.  Right now, everything I do increases my pain and I do have to judge how much I can tolerate and what is 'worth it' - and finding out where that line is has been close to impossible; it seems to change every day - however, it's is still not going to stop me trying.

So, for anyone who thinks their life is too full of pain to make space for anything else, remember the glass jar with the (almost) infinite capacity.  Life is what we make it, and no-one ever said it was easy.

And of course, there's always space for a cup of herbal tea with a friend... even if it's on skype... with me curled up in bed attached to my ice machine....

Be careful when you fight the monsters, lest you become one.
  ~  Friedrich Nietzsche