Pain, Health and Existentialism

I am being referred to our local pain clinic.  I'm not exactly sure what it will entail, or what outcome I should expect, but one thing has been made clear.... I will NOT get an appointment without filling out their forms.... (Referral to a chronic pain clinic; question on form: do you have pain? Well, at least that one was easy to answer.)

However the question that has caused all kinds of strife inside my head tonight was this:

It seems simple enough, but really............ it is not.  Is is just not.

First, my brain screams - define health? Do they mean pain, my life, my quality of life, my health in what context... actually, HEALTH in what context?

I think the problem is perhaps the word 'imagine'. It kind of works in my brain the way saying 'don't think of an elephant' does for everyone - it's impossible not to.  So when someone says 'imagine' my brain is very very good at just taking that instruction literally.  And of course, imagination knows no bounds....

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

Then.......... Answer everything about TODAY

What if I feel worse tomorrow; next week? By the time the appointment comes? Surely THAT would be a better time to answer. That's usually when they give you these forms.  Then at least you know you have put your 'right' answer on that day, and can explain it when asked.

My brain goes into overdrive...... all by itself.  I am really trying hard to think 'first number that pops into my head; first number that pops into my head'.......... but there is no number. 

Instead there is................................. Phenomenology; existentialism: is our only reality the moment in which we currently exist? (I curse my undergrad dissertation.)  If that is the case, then do the future and the past truly exist?  What about living in the moment? Zen? Pain being subjective?  How can I compare something subjective to the "worst I can imagine" or "the best I can imagine"

OK, reel it in....  So what is the worst imaginable state of health I think of?

• Locked In Syndrome, I definitely think that could be the worst. Ignore the could.  Just start here...no need for a whole list of alternatives.... So, that's at zero.

• A coma with no awareness would technically be a worse state of health (I think - considering HEALTH, not LIFE), but there would be no awareness about what was happening, therefore where would that actually stand on this scale?  How many times have I said I wish someone could just put me in a coma, let me heal, let the pain go away, and I could wake up when it was all over. A lot.  I even dreamed this. It was a very disappointing dream to wake from.

• Does that make my current state of health worse than being in a coma?  Is a coma preferable? (Yes, right now it holds some appeal.  For me - purely because I wouldn't be aware of my pain.) Does that mean if I would prefer to be in a coma, then I should consider my health to be almost as bad as I can imagine?

• Except I can imagine much worse - terrible things happen all the time.  I'm not facing a terminal illness; I still have the ability to think and use my brain (not scoring high on the positive scale at this exact point in time).  The possibility of intractable pain for the rest of my life is still a horrifying possibility - a lifelong disability.... does that count as just thinking TODAY?  Or is that imagining the worst I can imagine.  I think the instructions are somewhat contradictory.

• Reel it in again....nobody knows where the pain path is winding; I prefer to just maintain a positive outlook on that one (My nerves will heal; my nerves will heal.... they are not damaged beyond repair). I would just quite like to be in a coma until my nerves do heal; or they figure out a way to take my pain away (that doesn't involve suggestions of experimental treatment with bio-terrorism agents)…….. circle back to this idea.... not really making progress....

Again, I wonder out loud  (yes, I am talking to myself) how HEALTH is defined…. Is it simply the ability to live a 'normal' life? (Does anyone do that?)  Should I be thinking about the best life possible versus the worst possible - in that case, I consider myself very lucky; there are people all around the world dealing with unimaginable challenges simply to survive every day.  I have a sore shoulder and very limited use of my right arm.  It's not good, it hurts like hell; but it's not like I suffer life-threatening discrimination for my beliefs, or the fact I'm female; or am a refugee fleeing war in my country - does that count as quality of health?  I suppose that would more be LIFE, not HEALTH.  So where does HEALTH lie between LIFE and PAIN?

….. But, if I'm supposed to imagine MY best health possible compared with MY worst health possible - subjectively - and mark that on the chart, then I'm not very happy with my health just now - not at all happy, so should I put a really low number?

What do the numbers mean?  Using the word PAIN would have made this a bit easier...

I wonder if everyone finds these things this difficult……? (I doubt it.) I try so very hard to do the 'gut instinct' thing here - it's always what the questionnaires tell you to do.  But my 'gut instinct' is all these thoughts.  Really.  They just jump in my head all at once and the only reason it takes so much time is because I have to try to sort through them.

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

I wonder if I should just write an explanation instead of picking a number.  Picking a number is too hard.  I really do not believe humans should be broken down into numbers to be entered into a binary computing system.  We are too complex. (SEE!!?)

I want to pick a low number; I am NOT satisfied with my health right now at all…. It prevents any kind of normality… the surprise of 'waking up' and not knowing if today I will be attacked by the firey raging pain monster; exhausted because pain has prevented any kind of beneficial sleep; or feel (apprehensively) that maybe today I can finally at least LOOK at my to-do list without collapsing onto an ice pack.  But I hate seeming negative; I have coped with this entire thing (actually, that 'entire thing' would be my life....) by trying to focus on the positive. It goes against my attitude to pick a low number…. but I don't think that has done me any favours in the past -  unfortunately I think I am too good at slapping on some make-up, a cool hat (to hide the unwashed hair) and faking it.

Plus the girl on the phone laughed at me. (Yes, she actually did. It was a definite chuckle, to be specific.  It is impossible to give me an appointment without this terribly important form, apparently.)  If she needs this in front of her before she can assign me an appointment, then they must give it some degree of importance (hence my deliberating!).  Therefore I should probably pick a low number - be realistic instead of....... i don't know, what do I usually do?  I don't really lie........ my Mum once said she didn't think I was entirely honest about the severity of my pain.  I just assumed the various shoulder/ physio therapists knew, at that point - but here they don't.  I know they don't, so I really DO need to remove this innate desire to appear strong, and be honest about all this (possibly the best advice I've been given this week).  I DO need to be seen by someone at the pain clinic as soon as possible…. I DO have severe pain.  But I don't want them to think I'm a drama queen and a weak female, as seems to have been the general (clearly unjustified, as physical evidence later showed) opinion of other medical professionals.  Crap.  I have been emotionally scarred by too many judgmental medical professionals and it has rendered me incapable of actually picking a number on what is possibly an entirely arbitrary chart.  There's a cheery thought.

I wonder if I just declare I'm a phenomenologist and I can't answer this question on grounds of my philosophical beliefs, I could skip this one (hey, it works for religions).  I really don't see how rating ONE day on a scale, when realistically my appointment is going to be weeks (hopefully not more than weeks, but that possibility does exist) from now, is so important…. I could just write: I believe we live in the moment and exist purely in that reality and therefore cannot imagine anything other than what I feel now, making it impossible to compare this moment to anything else.

It's kind of my 'medically enforced zen' (i.e. don’t think about the future or you WILL begin to freak out and question the meaning of everything).

It's kind of true…. I've spent two years being told NOT to compare my pain today to, for example, how my pain was immediately after my surgery (which is definitely the WORST I can imagine, based on my own experiences).  Pain is subjective (so I am repeatedly told).  And right now, tonight, as I was filling in that form, I felt like someone had embedded a giant axe deep into my scapula that was cutting right through my shoulder blade area, all the muscles around it, and into the back of my ribs…. And somehow it was sending out little electric shocks from the axe-head in all directions.  Should I put something REALLY low?

That's not exactly what the instructions say…. I have experienced worse than this - should it go on my experience, rather than an imaginary best and worst?  I struggle to think where that would put me either.

I think back to the existentialist/ phenomenologist get-out clause……. I then consider just writing the link to the blog I wrote when I tried to meditate…. That seemed easy compared to this….

I look at the clock and realise it is nearly 2am; I am quite sure I have been having this conversation with myself for well over half an hour, longer maybe.  Perhaps I am crazy….

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

I decide my life is not 50% of what I would like it to be, nor is it closer to Locked In Syndrome than to 50%, and choose the number 40.

I imagine being asked why I chose to write 40.  I wonder if explaining it was 2am, I had been having existential arguments with myself for too long and I had to get to bed because I had physio the next day would be an acceptable answer for arbitrarily picking an arbitrary number on an arbitrary scale that someone I don't know, and who doesn't know me, will use to judge me. Or more likely, enter into a computer programme designed for that purpose.

I wonder if that is better than writing 'I'm an existential thinker.'  I really don't know.

And now, after I have written this all out, completed the formS (yes, that was just one) and sealed the envelope, I realise I should have written 42.  If asked to explain, that would have been simple.

"There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. 

There is another theory which states that this has already happened." 

     ~ Douglas Adams

Janus

Janus is the Roman god of two faces - one looking backwards and one looking forwards; the month of January, a time for reflection and a time for looking forward is named for Janus - and even more pertinently this year, winter storm Janus paid us a visit in the Eastern US, dropping over 13" of snow in Philadelphia, but just about 7" west of the city where we were.

After Winter Storm Janus

Now, at the very end of the month (as I am writing - likely it will be February by the time anyone wakes up and reads this, but I'm back in Scotland with a turbulence-traumatised-jet-lagged body(!), so I'm still counting it...), having travelled back after spending xmas and new year with my parents (and fitting in some doctors'/ physios' visits) it seems like a time to reflect.


Reflecting is easy.  Reflecting is what has happened, what's in the past; what we know.  What we would do differently if we encountered a situation again.  As they say, hindsight's 20/20.


Looking forward is harder.  I actually believe looking forward is harder for everyone, most people are just lucky enough not to be aware of that.  People make plans, set dates, book holidays, plan weddings, families, travels, even envision whole lives for themselves, for their loved ones -  and in a split second - a twist of fate, a mistimed moment, a misjudged movement, a slip - anything, whatever we want to call it; those of us who have experienced that split second - in all the disguises it wears - know.  We know that planning is a joke.  Looking forward is a joke.  People tell us exactly what they have planned, month by month for the next year and we smile and nod and hope it happens for them, but - and I know this from talking with some close friends who have all experienced some sort of personal trauma which has turned their lives upside down - 'we' don't really believe them.  We've learned that plans are great - they're exciting and appealing and, sure, we'd love to be making life plans too, but we're always aware they are really just ideas - things we'd like to happen, but we have learned nothing is guaranteed.

And it's not that we don't make plans in a negative way, or even that we don't attempt to make plans, but we just have this awareness that we're making a plan, it sounds great, but if it changes, we're also ready for that because we know how fickle the universe is.  We know.

January is always a time of reflection for me.  Even when I try really hard for it not to be, I simply can't help it (a bit like making plans!).  If I really think about it, I can go right back...

January 2005:  This is actually the year that my life was turned upside down. NINE years ago now.  Not that I really knew that at the time...  I got a virus - my mum had it too - mine just didn't go away.  I truly never understood what fatigue was until this time - it's NOT like being tired.  Mum moved back to Edinburgh and between the support I got from her (in every possible way) and the support I got from my wonderful tutors and lecturers on my MSc course (who staggered hand-in dates, let me run my MSc experiments from home, and offered every kind of support that was available to me, I was able to push through and finish my MSc.  Despite not being happy with my overall grade (and having been repeatedly told I should be proud, not disappointed!), I DID complete my MSc.  I then suspended the PhD for a year, went to Florida to stay with my parents for a year, with every intention of returning to Edinburgh and beginning the PhD in 2006.

January 2006: By this time I was ILL.  This was my worst year, with all the (as yet unknown) Lyme disease symptoms continually getting worse, spreading throughout my body and causing cardio and neurological symptoms along with a complete depletion of energy levels.  Looking back to that time is surreal.  I remember not being able to walk; spending all day in bed with the sole goal of making it downstairs for dinner.  I remember sliding down the stairs on my bum, holding on to different things to support myself so I could walk to the kitchen table,  that absolute minimal effort taking so much out of me that I could not even chew my food; and my Dad carrying me back upstairs again.  I remember it with such a strange 'detached-ness' - surely it didn't really happen to me, but it did.  I remember needing to borrow/ hire a wheelchair anywhere we went; not going to sleep at night for fear my head was going to explode with the horrendous headache I had.  I look back on that time and it very much seems a surreal blur, but somehow, I survived it.

January 2007: This was the year when things began to change... kind of.  I learned about the microbiological theory of chronic fatigue syndrome - still my 'official diagnosis' (i.e. we don't know what's wrong, go to bed and waste away; better yet - see a psychiatrist, actually, I wasn't even offered anything like that - I know people even now, who are though).  I learned about allicin, my very foggy brain attempted to learn microbiology and I took some supplements that began to change things.  Ultimately they definitely stopped me getting worse; they gave me improvements with some things, but looking back - they seemed huge at the time - they were minimal.  What they did was give me hope - this wasn't going to be this bad, forever.  It was the year I got kicked off an online forum for daring to suggest to people diagnosed with CFS that something might actually help them.  Honestly, sick in my bed, a member of a website (lets call it 'cloudy chums' - a reference to the difficulty in thinking and sharing those experiences with others in the same position) and eager to share my progress, and maybe help others.  The NHS's approach to CFS/ME/CFIDS was to 'convince' people through cognitive behaviour that they had to accept they would never get better.  Turns out they were pretty good at that - shame they didn't put the same resources into some actual helpful research....  My improvements may have been minimal in the big picture, but were HUGE at the time.  I could stand up and have a shower, wash my hair on my own, walk for short periods without a wheelchair being required.  Those WERE the first steps of that recovery.  Even then, I never knew how complicated THAT recovery would be.  Everything required careful calculations (and still does) - how much energy did I have?  How would I feel after doing X? Were the repercussions worth it? .... etc.

From 'The Spoon Theory' by Christine Maiserandino
(Click for her wonderful analogy)

January 2008:  I had continued to make progress throughout 2007, albeit very slow and careful progress.  I was unable to suspend my funding for my PhD any longer  - I had been ill too long - another reason part of my potential was taken away from me - no more PhD funding, it's only acceptable to be ill for a short period of time.  However, I didn't want to go down without a fight.  I spent 3 months (almost) at the beginning of the year trying to get back into it.  I moved back to Edinburgh and ran a set of experiments.  I was living on anti-nausea medications and red bull - and pro plus.  I would get home at night and have no energy to make or eat dinner.  I completed a set of experiments, but I undid all the hard recovery work I had done leading up to that.  I made the decision to give up the funding that year.  Ultimately, it wasn't a hard decision because my health had to come first, I just hated that I had to do it.  This was the year I had my official Lyme diagnosis - confirmed by spirochetes in my blood cultures.  Suddenly a whole new world of microbiology - with treatment! - opened to me.  Of course, my NHS tests were negative and that door slammed almost before it opened.

January 2009: In the first few months of 2009 everything changed.  My Dad's job took him to Pennsylvania where Lyme is common - PA has one of the worst infection rates in the US, and one of the highest deer populations.  A friend recommended a Lyme doctor, and an immigration attorney.  Wow! A place where there are actual Lyme specialists.  I had never heard of that - as dumb as that sounds now; there is a HUGE amount more information available online about Lyme now than in 2008.  The visa I had was actually the same one required for medical treatment and therefore I could move forward that way, with an awesome Lyme doctor, and an awesome immigration attorney - both of whom are very special friends to me now.  It might have been  positive news year, doesn't really mean it was a good year - basic logic.... if you have an infection (one of the most complex known to man) running freely in your body for 4 years (or likely longer before I became symptomatic), it's going to be a lot harder to get rid of than if you catch it early (YES!! IF YOU FIND A TICK, GET CHECKED AND GET ON ANTIBIOTICS ASAP!! I CANNOT STRESS THIS ENOUGH.  AND YES, I AM SHOUTING!!). The first choice of drug is an IV antibiotic - these are about $1000 a week, plus a PICC line (a permanent IV - to prevent a zillion injections a week, which is also expensive); this was simply cost prohibitive for us, with no health insurance for me, as a visitor.  Using regular antibiotics is still effective, there are just more side effects, especially in trying to get higher doses into the body.  2009 was spent dealing with horrendous 'herx' reactions, vomiting, and changing to a different antibiotic when my stomach could no longer tolerate one type.  There was improvement though.  I knew it was going to be a slow, rollercoaster-ride of a process.

I'm pretty sure I've put this in before, but I really can't stress to anyone enough how important it
is to get early treatment for Lyme disease - if you have ANY of these symptoms (especially in combination) and have been in a Lyme-infested area (almost anywhere now),
PLEASE harass your doctor until you are sure you are ok!

January 2010: This pretty much continued as the latter half of 2009.  I was getting better - the head-exploding headaches had eased; my resting pulse was under 100bpm, I could shower, wash my hair AND shave my legs in the same shower! (This was a big deal).  My energy levels were still not great, and every now and then we would get 'stuck' and take a break from the abx, switch to a different type; try different herbal supplements mixed in, etc.

January 2011: Lyme-wise, I had tried stopping my abx a couple of times only for the giant hands to reappear under my skull, squeezing my brain and causing the horrendous headaches again.  I also would just sleep - constantly - at those times.  I started on one abx (azithromycin - which had gone from $800 per month after its patent expired, to a more affordable amount making it an option), once a day, and it seems to keep things under control now.  I recognise the symptoms of Lyme 'taking over' and at these stages, an extra dose for a month usually stamps it back down again.  There are many issues in the news about the overuse of abx, but I have never had side effects because of long term use (the ones that made me sick can make anyone sick, used normally - or even used as a prophylactic against malaria for travellers).  I do keep a careful diet, take a good probiotic and digestive enzymes, but I don't eat red meat (at all), or factory farmed dairy products - I eat organic.  It's possible people eating a conventional diet are exposed to more abx - in the US 80% of abx use is in farming.  THAT never comes up in the news when doctors are discussing they won't give out abx (this doesn't change for a cold/flu - they are viral, so abx are genuinely useless there).  

In early 2011, I decided I could, and wanted to, go back to University and get my PhD - it had been my goal, my focus all along.  I was accepted back on to the programme and started in September.  Unfortunately almost all the funding had dried up, there were very few scholarships (and I did not get one - really, having done nothing for several years).  However, my plan was to fund my PhD with my 'accidental' jewellery business, borne out of my hobby, that had the potential to carry me through.

And then, of course, came June 2011 when that split second happened - I slipped on the stairs.  It was 11am, I was carrying some laundry downstairs in my left hand, flip flops on, hand just resting on the top railing as I took my first step.  I can remember it like it happened in slow motion - I slipped, felt my feet completely disappear from under me and swung and dangled from my arm, all in a second - landing a couple of steps further down, sitting on my bum, still holding the laundry in my left hand, and with my right hand still holding the upper railing.  When I went back, much later, that railing is about 2 inches higher than my arm can stretch to (I later tested with the left one).  I screamed out as I fell - got a fright, honestly saw myself tumbling, head over heels down the entire wooden steps.... probably why I gripped so hard.  My mum was home and came to see what the noise was.  I also remember this in a very surreal way.... the main bits being "why is your arm in the air?" - I looked at my arm as if I had no idea it was my arm.  I didn't know why it was there, and I couldn't move it.  My mum asked if I wanted her to try to move it.  She did - very carefully.  We now know she 'reduced' it - and that it was an inferior dislocation:

From Wikipedia:
Inferior dislocation is the least likely form, occurring in less than 1% of all shoulder dislocation cases. This condition is also called luxatio erecta because the arm appears to be permanently held upward or behind the head.^[7] It is caused by a hyper abduction of the arm that forces the humeral head against the acromion. Inferior dislocations have a high complication rate as many vascular, neurological, tendon, and ligament injuries are likely to occur from this kind of dislocation.

Strangely, it wasn't instantly agony.  I did say to my mum as I sat on the stairs and she had just put my shoulder back into place "this doesn't feel good".  She now says that was the understatement of the year.  I had zero movement, and the pain built as the day went on.

Of course I was supposed to fly back to Scotland the following week (see this 'planning' thing.....) and that was delayed.  There's a lot that happened after I did go back which I feel ready to write about soon, but for the most part, my 'shoulder story' in on here, so I don't need to go into detail about all that now.

January 2012: 6 months into my shoulder injury, things were not healing, I was not getting appropriate treatment and I was struggling with everything - my PhD, university, living alone - life in general.  I actually can't believe it has been two years since then.  I went to PA for 6 weeks over xmas (Dec 2011-Jan 2012), with research work to analyse, and I was there until September 2013.  I think the full details are for another post - I was unable to write them at the time.  And with the pain and stress on my body, the Lyme symptoms were reactivating and becoming more erratic too. That journey definitely was not (is not) over, and little did I know the shoulder journey was actually going to be worse.

2012 was an unbelievable year.  I swear when I tell people I think I wouldn't believe myself either.  Definitely quote of the year, by the wonderful Dr G Williams who diagnosed me in Philadelphia: "There's pretty much one guy in the world who can fix this for you and he's in Kentucky. I think you need to go to Kentucky and see him." Cue cartoon style *jaw drop* from my mum and me. Turns out he was right....

Surviving 2012 was the biggest challenge I have ever faced.(maybe until 2013)  Looking back, when I remember the true pain and horror and unknown that I felt every day, I would have gone back to 2006 - and that's really saying something.

2013: January came and it became 'I can't believe my surgery was a year ago and this isn't any better' - an expected 8-12 month recovery was clearly not in sight.  Much of that is documented here, although I tend to write about the positives on my blog.  Last year I was facing the possibility of never being able to use my arm again; of not knowing WHY things were happening the way they were; of being in severe pain forever - researching ketamine comas and botox therapy, both experimental, but with a possibility of easing pain, even if it was by changing the pain centres in the brain, and by paralysing muscles (respectively) - nobody had better solutions.  The future seemed to be a big black wall just staring me in the face, with no indication of what shape or form it might take.

Towards the end of the summer, I found a new nerve doctor, also an orthopaedic surgeon and  at the moment, this is the hope I have found.  Everyone seems pleased with a feasible answer to the 'puzzle' about why I have not been healing; but it is still going to take time to see if it IS the final answer, or simply another piece of the puzzle.


So......... January 2014.  Here I am.  I can look forward with hope, hope that finally, the best doctors and physios I have working together for me have found the reason for my severe pain, and for my slow healing; I can hope that this will lead to better pain relief - although in what form, nobody has any idea - I am already taking enough meds ("these should knock out a horse" kind of meds), and not getting true relief, only a slight easing of pain.

Ha ha... not even joking though!

When I look back and I reflect upon what I HAVE managed to come through, it should give me encouragement that I CAN keep going.  But in all honestly, it is exhausting.  I am going to try to be more honest about things this year.  Waking up and feeling the agony searing through my body before I even open my eyes is wearing.  Making any effort to sit, to be sociable, to go anywhere - and before that, simply getting washed, dressed, finding the right clothes that are comfortable enough for the pain that day before I even contemplate what I'm actually going to do makes the simplest things into huge challenges.  Having an outfit planned before I go to bed the night before seems like a good idea - but getting dressed, and realising that the top is too tight for today, a strap presses a sensitive part of my shoulder which has become inflammed overnight; or the top presses a painful part on my ribs that have come out of place again; or squeezes my upper arm if it's swollen, making my hand go numb... and more... these all mean I have to change and find something else - this involves getting undressed again, then trying something else, seeing how that feels (sometimes repeat, repeat, repeat..... sorer, sorer, sorer) - it doesn't matter how organised I think I am, something else always takes over.  Sometimes it is the sweat, caused by the pain, which means I have to change before I've even left my bedroom because I don't want to wear sweaty clothes all day.  The effort required for all that makes me feel like I've practically done a workout before I've even left my bedroom...... which requires a rest, a lie down - something to calm my racing heart, stop the sweating, wait for the black sparkling lights and dizziness to subside, and beat the overriding 'let me just go back to sleep' feeling........... it IS hard; and it IS frustrating.



So as I look back to where I have come from, I know that I have survived things I would have never thought possible and when I look forward I hope that on those tough and challenging days, that is the thought that always remains with me.

.... for something BETTER!

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

"Changed in a positive way"

Yesterday I saw my physio at UPenn, Marty, who has been overseeing my 'progress' and treatment because he is considered the best and most experienced physio in this area, specialising in scapular issues.  I was referred to him by my surgeon, Dr Kibler, 17 months ago now.  For the first visit, my regular physio (in PA), Angelo, came to my appointment with me (a real illustration of how wonderful he is) and I was evaluated by Marty.  I was in a very bad way at that initial consultation.  I saw Marty and Dr Kibler together at a conference in Philadelphia in November 2012, and Angelo (and my Mum) were also there - I felt very lucky to have had the opportunity to have them all in the same room, sharing opinions and discussing the way forward at that time - especially as they all work hundreds of miles away from each other.


Seeing Marty has been incredibly helpful.  In all honesty, the appointments are good, the information is top class, but the general opinions on my progress and the state of my shoulder are not fantastic (possible understatement.... dire would probably be more realistic).  One of the main benefits of seeing him every 4-6 months is that he can offer some real perspective which is difficult to get when I am dealing with my shoulder every day, or other therapists are seeing it weekly, or even multiple times a week.  


My physio in Scotland (I'll call him R), felt it would be helpful for him to have a scapular-issues-expert give some feedback to help guide him with his treatment.  He is also a fantastic physio, and has the advantage of knowing my body well, as he has treated me throughout my life for the many injuries I sustained as a gymnast.  He also has strapped my injured ankle for competitions, and watched me fight through injuries to return to training and competing as quickly as I could - basically, he knows me; he knows I am not someone who is beaten by my injuries; that I have the ability to battle them; that I know I have to work to recover; and he has watched me go through that process multiple times before.  So on a personal level, he knows my capabilities and determination, therefore he really does know that I am not the type of person who will not bother with exercises, or fail to adhere to my rehab programme - he will never accuse me of being weak, or neurotic, or not able to deal with pain because he knows that is not me.

Generally I am described as a 'compliant patient'! Although the 'resting to heal' bit seems to require more mental effort than the 'pushing through' bit - I have learned that the physical response really should dictate this... I'm just working on applying it a bit more effectively.


Despite his expertise, and experience in dealing with unusual sports injuries, R hasn't encountered my injury before (I really don't think anyone has - not all of it in combination) and he said it would be helpful for him to have some feedback - and some perspective, which is exactly what Marty can offer, having evaluated me from August 2012.  So I am sure he will feel both delighted and relieved that Marty said I should keep doing what I'm doing just now - it is the greatest improvement he has seen (have to qualify, that IS relative).  He felt that my scapula is moving better than he had seen it move before.  That's the good news.  And it IS really good news  -  it's been a long time coming; it still does not move anywhere close to 'normal' (and nobody knows if it ever will); it does not move in the same way as my left (good) side and (in my opinion) it really can look quite deformed in some positions (I don't think anyone would disagree, they just steer away from words like that!) -  BUT I have many hurdles to overcome and still a long, probably bumpy, road ahead of me filled with unknown challenges, heading towards an unknown outcome.


One step at a time - still the necessary advice.

I did take a copy of my dynamic neuromusculoskeletal (NMS) ultrasound reports to my latest appointment (I only got the reports in November; scans last August) and the specificity of the reports is something very new in dealing with nerve injuries.  The scans, and the fact it is possible via these ultrasounds to view the soft tissue - muscles, tendons, ligaments, nerves - as my arm was moved, confirm what was really just a suspected issue beforehand.  It seemed to be clear to the physios that I had nerve issues, but the standard nerve testing at the moment is an EMG (electromylograph) where hollow needles, filled with electrodes are inserted into the muscles and the electrical conductivity is measured.


This involves sticking the needles into different muscles (one at a time), testing at different depths of the muscle, testing with passive movement (the doctor moving the arm/hand/thumb etc.) and active movement (me moving, or attempting to move).  I'm sure I've said it before, but just to really reiterate - these HURT.  These hurt like hell.  As in crying out and whimpering and squealing throughout the entire process. Imagine having a needle pushed into the muscle between your thumb and first finger and contracting the muscle so it actually feels like you are squeezing a mini metal rod inside the muscle (feel sick yet??) - that's about the best way to describe how that feels; then imagine having an injection, but instead of a 'slight pinch' and 'over in a second', imagine the needle is inserted and then wiggled about at different depths - pushed deeper, wiggled, pulled out a bit, wiggled.... get the idea?  I have to stop.... the memory is actually making me feel sick!! -  I had four EMGs.  The first one took about 45 minutes and I think I had 14 needles sticks.  There are also nerve conduction studies which send little electric shocks from one point to another via electrodes stuck on the skin.  I have read people say these are sore, but compared to EMGs, they are nothing - a little electric shock, and over very quickly.


What these tests can show is whether or not a nerve is conducting electricity - i.e. sending messages to the muscles and telling them what to do.  All of my EMGs were negative, meaning I didn't have any severed nerves - a really good thing.  BUT.... that's pretty much their limit.  My later EMGs (6 months post-injury) showed "slow firing" which was attributed to pain and hesitation - I don't know enough about the actual numbers and measurement, I'd guess that was probably a factor, but what is impossible to tell (as far as I'm aware) is what other damage that might suggest.


With the dynamic NMS ultrasound, it is possible to see the damage in much more detail - on video; and to see what happens with movement - which I feel must be incredibly helpful, because most injuries DO feel better at rest. The dynamic testing has to be an enormously beneficial step forward.  With my NMS ultrasound, when someone lifted my arm, my 'thoracic outlet' (where the nerves split into the various nerves that transmit messages to the arm/ shoulder) was completely crushed to the extent that it disappeared on the video screen.


This video from Dr Fried's article (linked below) shows a normal scan, and a positive scan and is almost exactly what my scan looked like when comparing the left (good) side with the right (injured) side (it is short and features a simple, explanatory commentary):

• 
  

HAND

September 2013, Volume 8, Issue 3, pp358-365

Dynamic neuromusculoskeletal ultrasound documentation of brachial plexus/ thoracic outlet compression during elevated arm stress testing

Scott M. Fried, Levon N. Nazarian

(Click for the journal article - if the video doesn't load, it is available on the webpage under "supplementary material")

The reports from the scans (I had three areas scanned) are very specific - showing scar tissue within the body of the muscle, scar tissue/ adhesions wrapped around the nerve(s), inflammation of various muscles, nerves and tendons, and also changes/ abnormalities in the tissues, indicating evidence of injury.  And possibly most importantly, they show how movement affects these structures - by compression, or other abnormal effects of movement.


That's all a bit medically complex, compared to my usual blogs, but it's necessary to explain because ultimately it reassures my physios that they were right - they can see nerve injuries from movement patterns, pain descriptions etc., but there isn't any 'scientific evidence' in many cases, which Western medicine has placed on a pedestal and considers necessary for confirmation of any diagnosis.  Unfortunately, it makes confirming nerve injuries and verifying the extent of a patient's pain very difficult for doctors.


I do understand that - pain is subjective and what might rate as a 4/10 for some people may be described as an 8/10 for others - how do doctors differentiate between this?  And perhaps more pertinently, is it necessary to differentiate?  If someone considers their pain unbearable, does it matter how someone else would describe it?  I don't know.

My scans, and reports do show that I have thoracic outlet syndrome (the crushed nerves in the video), brachial plexopathy and associated nerve damage; that I have scar tissue 'squeezing' my nerves, scarring in the muscles the nerves travel through; inflammation of the nerves at specific points, causing the burning and numbness, especially in my hand - and more.  In a way, it describes my pain; and, more importantly, it validates it.


None of this is especially good news from a physical point of view when everyone considers what this means for me right now - it means that my pain IS very similar to RSD/CRPS-type pain, except I have a cause that has been viewed - it still means my pain rates the same as the most painful chronic pain condition that exists (42/50 on the McGill pain scale - childbirth is rated at ~30-36/50); and I have that pain constantly - it never goes away.  The intensity fluctuates: sometimes is calms down and sometimes it roars, BUT knowing there is a reason for it does offer a little comfort - people with genuine RSD/CRPS do not (yet) have a medically understood cause for their pain, and it always comes with the possibility the pain can spread to other limbs, or in the worst case scenarios, throughout the entire body.

McGill Pain Index, showing RSD/CRPS (causalgia) pain ~42/50
(click to enlarge)

It does mean that my doctor can give me an estimated time on nerve healing (around 2-3 years from these scans) - again, this is not great, but it is better than being told "you could have this pain when you are 80" - which really might rank close to the top in terrible things doctors have said to me (it's a tough contest though!).  It means a lot of things are unknown; but it does mean my exercises and rehab programme can be tailored more specifically - so right now gentle nerve stretches (to attempt to stretch out the 'bad' scar tissue), massage to break up scar tissue within muscles, and maintaining a range of motion are the important things.  NOT attempting any kind of strength training, or resistance training, and resting when necessary, are all very important too -  because irritating the nerves in any way will only cause these problems to increase, and will prevent healing.


The outcome of my appointment yesterday was that Marty said, all things considered:
-  fracturing my scapula was nothing, 
-  the dislocated shoulder was not a big deal
-  the detached muscles were not even the biggest problem 
-  the torn muscles (all of them!) were not the issue
       (and those are some major things!!)

- all along, the brachial plexopathy is the WORST thing


I wasn't very happy that I scored 18% on the shoulder function questionnaire compared to 20% last August, although for 2 percentage points, that can fluctuate even within a day - it depends on exactly how my pain is when I answer the questions. I have been told NOT to focus on this!  I did think I'd have gained a few more points, but I still have very little 'normal' function in my arm - my passive movement has improved, but my active movement really hasn't - this all fits with the nerves not functioning so at least we all understand why things are the way they are (finally.... hopefully finally!).


For me there is some relief in that - having answers, hoping that this really IS the final answer; but it doesn't take away the severe pain, or the frustration of not being able to live any kind of normal life, and not knowing when that is likely to change.  It is also scary trying to look too far ahead - I do know (having been told by a couple of doctors, and also having read it in Dr Fried's book) that in some cases conservative treatment is not effective, and removing scar tissue surgically becomes necessary.  However, the fact I am seeing little (teeny tiny little) improvements now is a positive, and I am hopeful that it is an indication that we have finally found the right information and the right rehab programme, and that these will combine and give me the best chance at avoiding any kind of nerve surgery - inherently risky, for obvious reasons, and always a last resort.  But I just have to keep doing what I am doing; hope that I am creating an 'environment' that is conducive to healing, and that I will continue to see these small positive steps - and most importantly, will lead to a reduction in my pain level....... soon, please.


Marty's overall conclusion was that I am a little better - but "better is a relative term" and therefore I think the most positive thing he could think of to say was: "you've changed...in a positive way" - which is better than before!

Night night

I keep falling down the rabbit hole that is otherwise known as Pinterest....

I was searching for a little bit of inspiration, something funny, motivational - simple and quick because I've missed a few days posting due to increased pain (The Walk had some after effects, combined with a couple of other factors, my pain has been pretty bad). And I really have so many thoughts all interlinked that it seemed writing them down and separating them would be better left for another day.  So, determined to get to sleep earlier (failed) and to post something - I'm not doing too well with the attempt to write every day in January - I turned to Pinterest again, searching for something that clicked with me - I wasn't feeling inspired by anything - searching probably took longer than the writing would have.

Then my laptop fell backwards and I attempted to stop it in case it fell off my bed and since my right hand was on it, I tried to stop it with that, realised it's pretty useless and has zero strength, got my finger jammed right in at the hinges without managing to stop it from closing upside down and putting the computer to sleep (it closed THAT tight on my finger - THAT tight, I am amazed it is not PURPLE yet).  Then I found this and it clicked.... the perfect post for right now:

Sometimes, it's really the only option!  Night night from the insomniac.  Tomorrow is another day!

Lost in a good book

('Lost in  a Good Book' is the first Jasper Fforde novel I read; I bought it at Atlanta airport judged purely by the name and the cover, choice hastened by limited time, my impending flight, and nothing to read.  It's actually the second book in the Thursday Next series, and I'd highly recommend all of them to anyone who likes to push the limits of their imagination; but my Mum probably wouldn't because they gave her horrifying nightmares (although she still read on...). I am catching up on the series - reading book number 6 at the moment, and reminding myself how much I love these books and can get completely lost in them. We both saw Jasper Fforde speak at Bookfest in August 2011, in Edinburgh, and he was as engaging and entertaining in person as his books are to read.)

After writing about our natural ability to balance and adapt our bodies' movements almost unconsciously, I really feel compelled to share a little excerpt from 'One of Our Thursdays is Missing', the book I am reading just now.

To set the scene: the series features 'BookWorld' where everything that has ever been written exists; and where all written and fictional characters live.  Just go with it - it's too wonderfully complex and imaginatively crafted to even attempt to explain in one sentence (I recommend reading the books for more detail!).  In this particular part of the book, one of the fictional characters is crossing over to the 'RealWorld' for the first time.  On arriving, she struggles to walk, (because gravity is not usually a detail written into books by authors):

     "'Why does my face feel all draggy?' I asked. 'The underneath of my arms, too, and my boobs -   everything feels all, well, weighted down.'
     'That'll be gravity,' said Square with a sigh.
     'We have gravity in the BookWorld,' I said.  ' It's not like this.'
     'No, we just talk as though gravity existed. There's a huge difference...'"
     (One of Our Thursdays is Missing, p198)

After mastering the art of walking, and balancing (which takes a few pages of hilarious description and observation), she has to master another challenge: crowds.

I can empathise with this.  In fact, I can empathise with this so much that I feel it would be a fair conclusion to reach if, after reading this book, I decide I am actually fictional.  Somehow, I have escaped from BookWorld (or been transferred by the Blue Fairy); had my memory erased (it happens); and now my body is trying to figure out how to exist in the RealWorld. (It's really not much crazier sounding than waking up from an anaesthetic and telling the nurse I came from Scotland to have surgery in Kentucky... she thought it was the medication talking; when she found out it was true she actually said, "wow, you really do live in Scotland." Yup. I bet she hears some funny stories though...)

Back to the book. The crowd lesson:

     "'...By using subtle sensory cues and working to a set of basic rules, you can enter a crowd all heading in different directions and come out the other side, without touching anyone or causing an accident.'
     'How?' I said, looking suspiciously at the swirling mass of humanity."
          (One of Our Thursdays is Missing, p203)

Personally, I think that only applies to some people - the bit about actually using the subtle cues... In fact, I can guarantee that some people (the swirling ones, maybe!) don't even pick up on less subtle cues - like the big, black, blatantly obvious sling-contraption I have attached to me frequently (my arm is not strapped in now, but if I am going to be out, or on my feet a lot, with the weight of my arm pulling on my nerves, the nerve specialist recommends a similar support with just the 'cushion'.  Since my sling collection is big enough, we adapted this one to do the same thing).  If I saw someone wearing this (or a cast, or with a walking stick, or in a wheelchair - whatever), I would carefully step around them/ make sure I was not in their way/ hold a door open/ realise they might be going slowly - at anything - for a reason!

But in my people-dodging experiences (my preferred term for crowds these days)... I have indeed been forced to sidestep, stop, or (when there is no other option) make some sort of "excuse me/ look out/ ahem"  -type noise as someone (always bigger... everyone's bigger...) comes hurtling towards me along the pavement, eyes down, usually looking at their phone.  I have even had to 'jump' (ouch!) out of the way to avoid being bumped (sorer ouch!).  Walking and texting is dangerous!  Imagine we were all doing it and just assuming other people would jump out the way! Everyone would just be walking along bumping into each other... 

How can you miss this??!!
Seriously?!

And back to my favourite part of the story:

     "'The old "back and forth" happens a lot when real and fictional people meet,' said Square when I had returned to where he was waiting for me.  'If the Outlanders had any idea we were among them, it would be the surest way to tell...'"
               (One of Our Thursdays is Missing, p204)

Postcard of 'BookWorld', Jasper Fforde© & tea-bag-tag to fit

'A relaxed mind is a creative mind'