Rare disease day... the perfect date!

Today (Feb 28th) is Rare Disease Day - it also happens to be exactly 6 years ago since I had my scapular muscle reattachment surgery (very rare! I was the 270th person in the world to have the surgery, performed by the surgeon who created it & was the only surgeon performing it in 2012). It was the first step on what is still a long journey of rehab & recovery.

(N.B. I will try to fix these photos at some point, my photo editing programme on my tablet kept stopping; they do show my dimmed screen.... explained below. Not deliberate!)

'Shoulder stuff'

I write this as I am infusing IV antibiotics into the PICC line I've now had for 9 months to treat Lyme Disease - another rare disease... or under-diagnosed, even Google is a bit confused here: 

??????????????????????

Newest Lyme treatment - hard-going, but I think I am slowly...
tentatively... making some good progress

In the past 6 years, following my shoulder surgery, as we 'peeled back the layers of the onion'; I've seen many doctors, surgeons, physiotherapists &  other medical practitioners. I've been given various other rare diagnoses including Thoracic Outlet Syndrome & Complex Regional Pain Syndrome (CRPS/ RSD).  All from a simple slip on the stairs, 'saving myself' as my body weight hung and torqued from one arm - my once-strong arms, wrecked by several years of severe illness, combined with still-hyperflexible shoulders was a bad combination. On my list of identified injuries (suspected incomplete), some chronic or ongoing, others transient: 'inferior shoulder dislocation' (0.5% of shoulder dislocations) - my arm stuck up in the air, still holding the railing about 3 inches higher than I can actually reach. One physiotherapist summed it up best: "if you didn't have skin, you'd have ripped your arm off."  Some other injuries that occurred in that split second: brachial plexopathy & 'overstretching' injuries to my entire upper right side nerve network; various muscle tears, pulls & strains; other soft tissue damage, including damage to my fascia; & bone injuries, including a scapular fracture (they account for <5% of fractures, just FYI). So dear every doctor I may see in my life - if you hear hooves, think freaking unicorn!!

Photo excuse: sometimes being ill means being stuck in bed.
(I did not seek this out for this post!! I did play with silly Facebook filters. 😜)

Just to reinforce this point, in case it needed it, I've started to sweat in colour... neon yellow and light orange, specifically. I'm pretty sure it's linked with my nerve injury, which can cause very localized sweating; although initially I guessed it was perhaps linked to medication - nope! When I eventually decided to ask another crazy question neither my mum (in her professional capacity), my doctor, nor my PT had ever heard of it.  Although the response now is 'of course you probably have it... if it's a thing' ... And guess what?! It is. It has a name: 'chromhydrosis'  (the linguist in me would like another vowel in there).  I hadn't even turned to Google, it seemed so ridiculous; a PT student searched for it and my PT laughed (maybe with kind exasperation?!) as he read "very rare, incidence unknown". So, UNICORN!!

Added to the messy shoulder + Lyme mix has been post-concussion syndrome (/'minor traumatic brain injury' - 'minor' refers only to the amount of time spent unconscious /disoriented); a delayed diagnosis, but caused by my car accident 2+ years ago when my tyre blew out at 70mph and my car did an actual side somersault. Isn't my karma fantastic?! Urgh!  I haven't really talked much about that. I don't think I've written about it on here at all.  It's hard to think about, honestly; but getting some answers I didn't know I was looking for, and realising things I didn't know I'd been thinking (/worried) about has taken up a large part of the past few months.  Essentially I spent almost 2 years just trying to 'power through' a brain injury.  The post-concussion treatment I just started last November has been incredibly challenging, but it made me realise I have many head injury symptoms I hadn't even realised were symptoms - and they've been really severely affecting my life. Knowing they can be treated, and seeing some good improvements in some areas already has actually brought me a lot of relief. Not recognising symptoms in yourself is actually a symptom - I think that is a perfect definition of 'headfuck' - in every way!

It's one (huge) reason I've struggled to blog much... or to read, write, or use my laptop - my 'screentime' has been limited to a smaller tablet screen, dimmed, with an app that removes blue light to prevent my headaches hitting the highest intensity. I'm seeing little signs of improvement, so hopefully I can keep that going and get back to writing again.

 Additionally, the accident sparked my major Lyme relapse (not unusual); this really blurred the lines a lot between head injury symptoms, and fatigue & headaches that Lyme disease causes.  There is a lot I need to untangle - physically and figuratively.

  

Ultimately, I am making progress. I'm extremely grateful for the help & support I have, and access to treatment that is working. I'm grateful for the doctors & medics who think outside the box and look for the crazy things when nothing else makes sense. Progress seems slow, but when I think of how things were a year ago, 2 years ago, 6 years ago... I am still moving forward, I am still working hard, and that is all anyone can ever do.

Real progress!
Working a lot on flexibility,  lower body strength,
and increasing my shoulder & arm movements with supported movement 

There are many types of 'rare disease' & they suffer from reduced funding & awareness because they are rare. Diagnosis takes longer, and treatment is often trial and error - I am well aware!  The majority of illnesses are 'invisible illnesses' (or can be hidden); please, where you can, be kind, choose to listen to someone & believe them, even if they 'don't look ill'; support is sometimes the best thing you can offer a friend.

t minus 11 days

"And those who were seen dancing were thought to be insane by those who could not hear the music."

~ Friedrich Nietzsche ~

t minus 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

t minus 14 days

Monday:

Monday Me: "If I had working arms I would punch you."

My physio: "I would be delighted if you could punch me."

So.... it's not just me getting impatient and feeling frustrated!

Today my arm started to shake uncontrollably.  In an incredibly strange way - even held still, it was visibly shaking and felt not exactly sore (well it wasn't making my pain worse), but horribly unpleasant not to have any control over my own arm.  My fingers were numb with pins and needles ind it felt like I'd been whacked in the funny bone with a mallet - right at the beginning of the session.  "Make it stop! Make it stop! I can't control my arm!" (Drama queen?  Me? Never.  This was weird though.) 

 My physio started working up my arm - very calmly, massaging and trying to 'release' different nerves in my lower arm, elbow - nope, it just kept shaking uncontrollably.  I felt a surge of empathy for those with neurological disorders who deal with this frequently - I often feel like I can't 'control' a body part just now: hand, arm, shoulder - I can't make it lift something, or I try and involuntarily throw it instead (usually breakable things when that happens) and that's a strange feeling; also a feeling of no control over my muscles.  This was entirely different - I had absolutely no control and it was moving all on its own.  I was also feeling shaky and nauseated and using all my willpower not to hit the panic button in my head!

Finally, he reached my neck, started to twist my head and it slowed - eventually, with my head in what had to have been a contortionist position, it stopped.  He was trying to massage out any tightness in my neck - I was touching it, trying to pinpoint the spot - "here, feel it here - my vein seems to really be sticking out." (You know if you have really hot hands sometimes your veins stick up and you can feel them?  It was like that - a big vein right down my neck........ or so I thought.) "That's your vagus nerve." my physio told me - from what I've found so far on Google, it's not supposed to do that...

It actually calmed down and I very carefully went through movements and exercises gently today - no fight from me there, I have learned angry nerves are best left alone.  It does however offer a possible link for some of my weirder symptoms - but I'll leave that for another day, and some more research.

It remains to be seen whether this is a cumulative effect of trying to raise my arm - impinging on the thoracic outlet (just about the collar bone where nerves split to innervate the arm); aggravating my thoracic outlet syndrome, and the nerves I have that are wrapped in scar tissue; or whether there was an odd movement, something just slightly 'off' with either a way I moved, or one of the first couple of movements we did before it went crazy.

For now, (with hope) we chalked today up to a bad nerve pain day - and I'm really hoping it was -  just one bad day to leave behind me and move on from here.

"Never look back unless you are planning to go that way."

~ Henry David Thoreau ~

That kaleidoscope...

After reading my last blog post, my mum said she thought my kaleidoscope of butterflies  description was a bit tame - did it really describe my pain?  The answer to that, which was her point, is a resounding NO.  And it wasn't what I meant - it's definitely not all unicorns and butterflies chucking up glitter and pooping rainbows while I lie (in between torture sessions.... and by that I mean physio and daily exercises.... and generally moving) and recuperate from surgery.  Nowhere close!  When she finds me lying on the floor (the sit before I crash logic), or doubled over in pain in some contortionist position, trying to put pressure on a painful area - "It feels like I need to hold my scapula in place" or "my rib has popped out, I'm just pressing against it"; it is easy for me to understand why any kind of symbolism conjuring up nice pretty happy butterflies does not seem adequate to her.  And it's not. It does not describe my pain at all.   In truth, I loved the words, the imagery it conjured up as I was trying to describe a fluttering sensation that occurs with the spasming I get frequently; but the colorful idea spoke to me regarding my pain - my pain is like a kaleidoscope.

The butterflies are a description I have used before to describe strange fasciculations I get - kind of like that weird twitchy feeling you occasionally get around your eye; - that's a fasciculation.   I get them in the muscles right up the side of my body, often immediately after severe pain, accompanying spasms; or sometimes as a sign it's about to begin.  It's as if there is a closed space and million butterflies, all fluttering their wings within my body. Sometimes you can actually see it (freaked my sister out once!) It's not exactly painful, it's a strange sensation, unpleasant mainly because it always accompanies severe pain.... Which - it goes without saying - is painful!

Thinking a bit more about it, the kaleidoscope is a perfect way to describe my pain.  I love kaleidoscopes.  I've always wanted one of those test-tube type ones with confetti stars suspended in some form of liquid, the ones you just tip up & down to watch the colours and shapes through the viewer. Like these:

http://www.moon-dog.com/oilwandscopes.htm

My pain is colourful and fluid - ever changing. It's proved impossible to understand and this has been one of the reasons it is so difficult to treat.  "It" - apparently it is quite common, after a certain point, to talk about the painful part of your body; or the pain itself in the third person.  I've read various forums, blogs and other stuff about it online, and also become aware of other patients I talk to at physio doing the same.  I've commented recently that 'chronic pain' - or even 'chronic injury', which feels more accurate for me; but medically it's 'chronic pain' - needs its own name.  It's not like breaking a bone and being back to normal in a few weeks; or like getting a migraine; ripping off a toenail; stubbing your big toe; falling out a tree; flying over the handlebars of a bike; tripping up a kerb... (yes, this is a list of personal experiences; enough to make my point I think) - some of those things hurt more than others, some do take longer to heal than others, but they all heal. Properly.  Afterwards - and during - they feel totally normal (just sore), still a part of your body, and you never suddenly realise you've started referring to your stubbed toe as Timothy*.  

*Not a personal experience

http://www.pinterest.com/gmun22

My physio in Scotland, before he retired last year, told me that I "felt different" every time he manually worked on me, and that didn't make sense to him.  In his wealth of experience in treating injuries, he didn't know what to do with that.  My scapular-expert physio (I'll start calling him 'M') here has said the same.  It's not logical - you get injured, you start to heal.  There may be hiccups along the way, little bumps or plateaus in the road, but ultimately there is a relatively steady upward slope of some sort.

'Normal representation of healing'

Mine looks more like this: 

Representation of my 'healing' journey

(Currently optimistic that my recent surgery has been highly beneficial; unfortunately I do
know I can plummet into the negative very quickly.... but I'm being an optimist right now...)

 At home, my physio treated me as I 'appeared' each week. He focused on doing what he could do to try to keep my pain levels as manageable ('bearable' is more accurate) as possible; to calm the 'angry nerves' and inflamed tissue  - because he had no guidance, no further diagnoses or investigations into what was happening; no feedback from any orthopaedic, nerve or musculo-skeletal specialists.  Although so much is still unknown, here I have a world-renowned physical therapist who specialises in chronic pain and crazy shoulder/ scapular issues; I have various specialist doctors, and a wonderful PCP who all know my case well, and my awesome physio who has been treating me, literally, from the day I fell.  And - amazingly! - they all talk to each other! Groundbreaking idea!  What a shame they don't do that at home.


When I was back in Scotland last year, I had virtually no other medical support and without my physio's treatment, I know I would have been in a far worse position than I was last July anyway.  To be honest I didn't actually realise how bad I was until I got here.  I knew I'd been struggling at home, but it wasn't until I saw my mum's face, and cried at the airport (not something I usually do); had those first few days of having food made for me; not having to do anything like get to a supermarket to get food; or drive myself to a doctor appointment that I realised exactly how bad things had become.  I was indeed, treading water.  When I went to see my physios here and both physical therapists' measurements and assessments of my shoulder were so awful, it really just fit with the rest of my life.  Except my shoulder was stuck together instead of falling apart, like the rest of me.

Treading Water

Back to the kaleidoscope.  I have previously described my pain as colours.  I am a visual thinker; I dream vividly in colour, and the different feelings and sensations I get do make me think of specific colours.  Thinking of a kaleidoscope turning, constantly changing into different shapes and patterns of different colours seems the perfect metaphor for my pain.  And just to be clear, I'm not thinking pretty flowers and butterflies - think more daggers and nails, live wires, meat cleavers and claw hammers all slipping and sliding unpredictably into different arrangements.  That probably gives a better illustration of my pain.

The kaleidoscope image also works when I think of my body being the slowly turning kaleidoscope, where my ribs, scapula, arm, hand, fingers, neck, vertebrae are constantly changing positions - contorting into interesting patterns with body parts all in the wrong place.  That is kind of the way it feels - ribs dislocating, scapula winging, head of humerus sticking out the front of my shoulder, superior angle of scapula looking like it could pierce my skin, twisted vertebrae, visible muscle spasms, fasciculations, shaking muscles….. new 'pain patterns' with each position.

http://www.pinterest.com/gmun22

So when I read kaleidoscope of butterflies and thought it was a beautiful expression; I also thought 'kaleidoscope of pain' - that's a good way to describe it! It came loaded with meaning for me.  Even more so, with a kaleidoscope, you have to constantly turn it, or move it in some way - the patterns are constantly changing. I think that is a good way to explain my pain; to attempt to visualise it - yet also the most difficult thing for someone to try to understand (including me).  It is forever shifting into different shapes and patterns without warning - I don't know what is coming next, but the patterns of pain are as bright and clear as the patterns created by a kaleidoscope.   Although they certainly don't feel as pretty.

http://www.pinterest.com/gmun22

“Words have no power to impress the mind without the exquisite horror of their reality.”

     ~ Edgar Allen Poe ~

My Soulmate

An entirely accidentally appropriate topic for today....

I think the person who created this is possibly my soulmate.  I am not alone.  I am not the only one who overthinks simple things!

http://www.pinterest.com/gmun22/just-me-my-thoughts/

However, I think I can win.  Paper is a metaphor. It represents the written (and spoken) word, which has resulted in old sayings such as "the pen is mightier than the sword" (scissors or rocks, if we're talking about violence) and "sticks and stones may break my bones, but words will never harm me" - not something we hold to be true anymore, but I'm pretty sure it also works with the metaphor.  'Paper' is words, writings, ideas - everything; it can even be used to represent diplomacy versus a violent war.


 So Mr Anti-paper, as much as I love your thought process, I think you didn't quite finish it, perhaps we are not soulmates after all! Paper all the way! 

Just to weigh in, you can't beat some genius thinking from Sheldon........:

Rock, paper, scissors, lizard, Spock

From The Big Bang Theory

Sheldon even uses 'paper' in a broader academic sense! 

And since it's after 6am..... I think this might be my favourite thing I've found on Pinterest EVER (so far.... so much more to discover....):

http://www.pinterest.com/gmun22/just-me-my-thoughts/

"There  is  a  drowsy  state,  between  sleeping  and  waking;  where  you  dream  more  in  five  minutes  with  your  eyes  half  open,  and  yourself  half  conscious  of  everything  that  is  passing  around  you,  than  you would  in  five  nights  with  your  eyes  fast  closed  and  your  senses  wrapt  in  perfect  unconsciousness."

    ~ Charles Dickens

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!

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