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!

No comments:

Post a Comment