Friday, January 31, 2014


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!

Sunday, January 26, 2014

"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):

(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 a positive way" - which is better than before!

Thursday, January 23, 2014

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!

Saturday, January 18, 2014

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??!!

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'

Friday, January 17, 2014

Optimistic eyes

I've missed a couple of days... partly because I have stuck to my painkillers + energy drinks (+ sheer stubbornness) = ability to do things and go places; and partly because 2 days of that meant I slept all day yesterday.

Today was a beautiful day - the kind of winter's day I really love here: cold, but with a bright blue sky and the sun shining.  Mum and I went out a walk.  Or, as she calls it, at my pace, a stroll (definitely more accurate).  It's the first time I've been out a walk for several months and we did walk slowly, but an estimated ~2 miles in total.  A two mile stroll is a major achievement for me - and focusing on the little achievements (anything that makes us smile!) is important, when life becomes 'step-by-step' or 'day-by-day'.

It wasn't an easy walk for me - and it really was at snail's pace, with some rests and pauses - but the fresh air felt really good.  We did a circuit around our neighbourhood, and then continued and did another one across the main road, and back home.  It's amazing how natural it is for our bodies to adapt in ways we don't even think about.... until we can't do it - only then do we realise how much of an effort we make, entirely unconsciously, walking up and down little slopes or hills.  I know walking uphill (I'm talking a slight incline here - nothing major) is hard, and I know it requires rests because it makes breathing more painful and my 'stuck' rib cage attempts to expand further so my lung can expand, and it can't.  I know to stop, take some breaths (sometimes hunched over) and then I can go on - but it is much more reassuring to walk with someone beside me, just in case.  I hate saying that, but unfortunately, right now, it's very true. (Even more unfortunately, also justified.)

However, today I learned that going down a steep hill is harder than going up one! (Even a tiny, short one, it's the incline that tortures!)  It came to one of those points where my brain knew what to do, and my body didn't.  If these didn't hurt so much, they would be almost funny... describing them is quite difficult.  I've tried to explain it by suggesting to someone: imagine doing a somersault (I was speaking to someone who couldn't somersault) -  you know the motion, the movement and the shape, but you can't just do a somersault.  A better example would actually be to imagine what it feels like to do a somersault underwater (everyone's done that, right?  Is it only me who thinks that's incredibly normal...?) - you can't hurt yourself underwater, it's fun, easy, and anyone can try it - but you can't just transfer that to a gym (or a park) even if you know what it feels like.  It's not the best example, but it's the closest I've come to feeling like the person I'm talking to might, possibly, be able to imagine what I mean...  Except that I'm talking about something really simple - walking down a hill - which shouldn't really be comparable to a learned skill like a somersault.  But it is.  As strange as it sounds - and it felt stranger! - my body didn't know how to walk down a hill.

Everyone knows when you have an injury, often another part of your body compensates for a while until the injury heals.  Quite often, we're not really aware of it until the other part of the body that's doing more work begins to niggle too.  This was like that, except I was slapped in the face with it - my body's 'compensation attempts' failed miserably.  To go down a hill, we naturally lean backwards to distribute our weight and walk without losing balance.  My muscles don't have the strength to do that (plus it hurts so much that they start to spasm - it's not a case of just sucking it up and dealing with an achy muscle type of pain; it's more of a black-sparkles-dizzy-nauseating-blackness inducing pain).  My brain seemed to be trying all sorts of ways - my right foot on tiptoe (didn't work); twisting my hips (didn't work); various ways of limping (I really never knew there were so many) - I actually stopped and had to think: how can I do this?  Ridiculous! It wasn't a big hill, we were nearly home, so I let the weird twisty-tip-toed-limping movement take over and got to the bottom of the slope as the black sparkling darkness really was descending.  After refusing to take my Mum's arm for the hill, I clutched at her for the last minute until we got across the road and to the front door and I could lie flat on my back on the sofa.

I'm counting that as a win......

Tuesday, January 14, 2014

Lyme disease: one size doesn't fit all

Well, as planned today was 'A Day Out The House', mainly because I had physio - but we also stopped in at a couple of shops, then coffee and a bagel, and some time just wandering round the mall afterwards.  I did set multiple alarms on my two phones (one UK, one US) and put a 5-hour energy drink ON TOP of the first phone so I HAD to move to get it and pick up the drink to put the alarm off - it worked in waking me up anyway........ even followed by 30 minutes fighting the snooze button.

I actually felt better today than I have for a few weeks, generally (not shoulder-ly).  I'd run out of my antibiotics, probably about a week ago when I really thought about it - last week was one big blur of sleep.  I didn't really plan it, but I figured I'd see how I did without them and I guess the answer is still not good.  I did have a whole host of symptoms flare up - it's really hard to tell though, whether it is an active infection of borrelia bacteria, damage it has caused in my body in the past (which may or may not go away), reactions to chronic pain (which are complex and way more systemic that I ever could have understood before - especially when nerves are involved), or - at this time of year - a bug I might have picked up.  Or, more likely, a combination of any of the above.  

On the plus side, previous times I have stopped the abx, within days the Lyme headaches are back, and I feel like there is a pair of giant hands inside my skull, squeezing my brain - I didn't have those headaches this time, which I suppose is good, although instead I felt like I wanted to pull my left kneecap off, and the pain in my ankles, left hip and wrists has never been as painful as this week.  If just one day (two now - I guess if I still feel better tomorrow it might be a sign) of abx is enough to make me feel a bit better, that's also a big improvement. If it continues, it will be more telling.  Here's hoping!

I re-read this article on the Huffington Post's website today: "The search for global education: The 300,000 - Ticks" which was published last November, after the CDC in the US estimated there were an estimated 300,000 cases of Lyme a year - a significant jump from its previous estimate (which I can't remember right now, but it was far lower - perhaps a tenth of that).

It's an interesting interview and a good read for Lyme patients, or their family and friends as two Lyme Literate doctors discuss the complications of treating Lyme, and present their ideas on why it can be so difficult to treat.

One of the points in the article is that Western medicine has a strongly held belief - 'Pasteur's postulate'  that each disease has one cause and one cure (I have read of this being called 'germ theory' too - credited to Louis Pasteur) - not that every patient is different.  In the article, Dr Richard Horowitz, a well known name in Lyme circles, and an advocate for Lyme patients, discusses co-infections and other factors (e.g. a weakened immune system) which have to be addressed in order for patients to recover.  This is difficult to treat because each individual has different environmental factors, diets - lifestyles really; and treating each patient as an individual is far more appropriate than trying a one-size-fits-all approach.

It's a shame that something so obvious is such a revolutionary idea, but with increasing awareness about Lyme, within the general population, and the medical community, hopefully this will help create new treatment protocols, and more doctors will listen to those few doctors who are leading the way.... hopefully to a real breakthrough.

“We shall require a substantially new manner of thinking if mankind is to survive.”

   ~ Albert Einstein

Monday, January 13, 2014

Dance fairy

I think it's fair to say I spent more time asleep last week than I did awake.  Sometimes I just can't explain why, even in my own head - my body just takes command and I don't seem to have much control over it. It's usually when my Lyme symptoms flare up, my joints ache and my head begins to hurt - add that to everything related to my shoulder and I should probably be surprised I don't spend more weeks asleep!  Hopefully now with the really cold weather lifting (and finding another packet of antibiotics in the cupboard, after I thought I'd run out last week... oops...) I can wake myself up a bit more effectively!   I am now more than half way through my visit here, so this week - fuelled by energy drinks, caffeine, painkillers, and whatever else I can find to give me a boost, I plan to do more than just sleep!

I'm not exactly sure what, but I thought this little tea bag tag went perfectly with my 'dance fairy charm' and hopefully will subliminally inspire my brain to embrace consciousness and find some exciting stages to dance upon for the rest of my trip... metaphorically, of course.  My pirouettes are currently an exercise in 'letting go' in attempt to teach my brain to relax my muscles and loosen them up, since I can't stop the spinning and have to 'flop' at the end - it might be good for physiotherapy, but it's certainly not at any kind of performance level!

Here's to a (hopefully) much more exciting week than last week!

"Life is not about waiting for the storm to pass, it's about learning to dance in the rain."

    ~ Vivian Greene

Sunday, January 12, 2014

Don't slip

Sometimes the wisdom of tea bag tag philosophies is questionable....

Bed-time medications say otherwise!

While I completely disagree -  in my case 'slipping with my feet' was definitely a very very bad thing, and I am sure there are MANY people who are agreeing with me here, after suffering the consequences of a 'slip' or fall; I do get the point. This one sounds more like something that has come out of a fortune cookie than my usual tea bag tag philosophies!

I will agree 100% that 'slipping with your tongue' can be highly damaging and upsetting at times too; but (especially right now - and from past experience), 'slipping with my feet' is NOT a good option either!

Moral of the tea bag tag - just don't slip!

For people with 'invisible illnesses' - who put in (at least) twice the effort getting ready and at least five times the effort just doing 'normal' things; it can be difficult when people, even well-intentioned, say things like "but you look really good" or "what do you do all day?"  This often feels judgmental, even if it is not meant as such and it can make us feel as if we have to defend ourselves to 'prove' that even as we sit and have coffee, or dinner, and chat, that it is always a case of 'mind over matter' - with a limit on the time we can 'survive' it.  The intensity of the invisible icy-burning metal rods being pushed into my shoulder like a torturous version of kerplunk doesn't go away when I socialise, I just have to ignore them as much as possible, and (when possible) socialise on days where they are a little less aggressive; the sparkling lights in the room, and the nausea that accompanies them have become almost normal - the nausea is kept mainly under control with tablets and the sparkling lights are now ok until they get darker - but sometimes it makes it harder to concentrate and take everything in as normal because of the mental energy required to suppress the urge to lie down in a quiet place and instead focus on the conversation. 

Sometimes I almost wish there could be some sort of running commentary for an hour - just to  explain what's going on in my body... maybe even 10 minutes would show how many things I'm actually dealing with all at the same time.  It might seem like I'm just sitting having a conversation, but I can also be assessing how nauseated I feel, and working out when I last took a tablet and when the best time to take one so I can eat dinner is; thinking about whether applying my pain cream, or a lidocaine patch would address the burning feeling that radiates from under my scapula and feels like it could burst out of my chest; the funny movements - neck stretching, arm extending and twisting - are because my hand is going numb and I'm attempting to stretch out the nerves to 'decompress' them and hopefully relieve the burning, icy numbness in my hand; I'm frequently adjusting my position, trying to get comfortable on chairs designed for people at least 2 inches taller than me (really!! my feet never touch the ground, it makes for very uncomfortable pulling on muscles); and trying to make sure I move when I feel spasms starting in my neck so they don't transform into a horrendous headache.  

On top of all the constant assessing, working out, and attempting to relieve symptoms, I am working hard to suppress the pain for a while, long enough to be social - considering different ways to ignore it, or ease it - if possible.  Going out anywhere is like going out with a baby. I have to make sure I have my meds, my TENS machine, my numbing patches, water; I need to have a plan so that I know how many tablets to bring - I don't like carrying loads with me, but I need to have enough to cover the planned time out, plus an extra dose (always a 'just in case' plan); I also have to consider how warm or cold I'll be - I can't carry a jacket with me, so if I don't need to wear it, I'll just make sure it's in the car, but if I DO get cold, I start to get shaky and then my pain increases, so I have to make sure I have something warm, but light, because if I'm walking about and it's too heavy, I'll get sorer faster (this usually just amounts in throwing half my wardrobe in the back of the car to cover all eventualities); and then decide whether I need my sling; if I have pockets, will they be enough, or should I also wear an infinity scarf....? (Again, usually the answer is just to make sure it's all in the car!)  So while I love socialising, going out for dinner, sitting and chatting - my brain has to constantly evaluate and balance the pain it feels constantly, decide how I can mediate it, and hide all of that while I also attempt to pretend everything is ok and I am having a good time......... and it's not that I'm NOT having a good time - I love spending time with my friends and family - it's just exhausting.

I found this on someone's 'chronic pain' board on Pinterest the other day, and it made me think about all that in more detail, and it makes sense in my head, when I split it up like that, why I DO get so exhausted when I do anything..... my mind never gets a rest (and that's on top of its normal never takes a rest!)

And even writing that, attempting to explain it on here (to myself as much as anyone who reads it); it feels very much like complaining - which is why, ordinarily, every day I do all that silently.  I don't want to be the person who complains all the time - and I try very hard not to complain, I don't think it achieves anything.  It can be difficult to distinguish between complaining and explaining, if the circumstances are wrong.  Since my blog is supposed to share the honest truth about dealing with Lyme disease, and dealing with my shoulder recovery, hopefully that all seems more like an explanation than a big long moan!

Going through Pinterest boards that deal with these issues is interesting to me because there are so many graphics, like the one above, and others I've posted, that help to visually explain what is going on.  In a way, it's almost comforting to see that so many people dealing with pain and/or invisible illnesses post the same, or similar, graphics.  I'm sure we all wish we weren't paying any attention to them, but the idea that it is 'normal' within all this abnormality to feel a certain way brings with it a strange kind of comfort.

Be kind, for everyone you meet is fighting a harder battle
   ~ Plato