Rest, don't quit

And the best intentions always seem to be consumed by my body's utterly insatiable need for......... rest.  So January was not filled with blog posts/ positive inspirations/ etc. Honestly, what can I say except sometimes 'sleep happens' (and not always when I need it to happen; so when it comes in waves, I am taking advantage...... sleep heals? Right? - No. Honestly, I don't think so, if sleep healed I would be f***king superwoman by now; but everything else hurts less when I'm unconscious, so sleep still wins).

There was a time I would never have believed writing one thing a day could be too much.... but there's a lot I know now that I would never have believed 'before'. Erm, for example that I actually would learn to rest!

www.pinterest.com/gmun22

 When I am healthy, and fit, and energetic, and strong again (positive mantras); when my perseverance finally prevails -  I don't care that my body is probably going to try to remind me that 'we'* are not in our twenties anymore; I am going to remind it that ALL it did for the majority of my twenties, and so far much of my thirties, was battle with me when I needed to wake up and.... well, do stuff; do anything really - how hard every single physical and mental task is right now.  It* has to make up for lost time.

Therefore when it* is able, when I start bouncing places again, instead of trying to hide a limp and struggle to match the speed of a snail; I will remind my body about all that time we* have to make up for....  I will remind it about aerial yoga, acro-yoga, indoor trampoline parks with foam pits and parkour-trampolining walls..... actually, and parkour, slacklining, 'mainstream' breakdancing..... all of it - I will remind my body that it was just not an option when I first read about it/ watched it and longed to try every single thing -  that when I get my bounce back, I have over a decade to make up for!!  And sometimes, that thought is exactly what I need to keep me going - whether it's battling through one day, or accepting that - yes - 'resting enables healing'.

www.pinterest.com/gmun22

Yes, I have learned how important it is to rest.  I have learned that there are types of pure fatigue and exhaustion that nobody knows how much rest they really need.  That all the rest in the world can't fix 'tired' sometimes.   But because I have learned this; I have also learned I will never, ever take my energy or my health for granted when I get it back.  I have learned I need to rest.  I have also learned never to quit.  Because despite everything - every puzzle, every mystery, every obstacle that I have encountered, I have eventually learned enough to fight it (or sleep through it; cry through it - embracing honesty, remember! And it often feels far more like sleeping and crying dominate. Whatever way.... I have learned I can get through it; whatever that takes).  And one day, I want to look back over this and say I did enough to overcome it.  

And perhaps that is the greatest lesson having both a chronic illness and a chronic injury with severe chronic pain has taught me - never to quit.... and within that, never to give up hope.  One day, when I am back with the right people to help me and support me, I will win; we will win (there are more people than me invested in this journey - for them I am very grateful; but I need them.... and that's another post).  I will embrace my dreams, goals, and feel like I can take on the world again. One day.

I feel this truly expresses how it feels to fight Lyme
  and a chronic injury (/chronic pain).
I look forward to the day where I look at a fresh challenge and can smile.
( pinterest.com/gmun22 )
(It easily covers each individually! So double fight = double reward?! Please universe....?!)

"The danger is not that we aim too high and we miss it, but that we aim too low and we reach it."

- Michelangelo -

*Geek Moment:

*'we' - so the linguistic geek inside me finds this pretty fascinating..... it is very normal for someone with a chronic illness or injury to see it as something that is not a part of them and to talk about it either in the third person (N.B. This is not the same as just generally referring to yourself in the third person.  In some cases, it's batshit crazy.) or as something belonging to them: 'my shoulder was not happy today'.  It sounds a bit crazy, and when I became aware I had been doing it quite a lot (slightly questioning my sanity); I stumbled across an article on chronic pain that talked about it a bit (and said it was totally normal, not a little bit crazy!) I think it would definitely make a cool topic for a thesis (I declared 'geek' as a heading here, therefore 'cool' and 'thesis' can totally be used in the same sentence).

I've noticed other people facing severe health issues do the same thing too.  I just thought I'd clear up the use of 'we' as I do it quite a lot and I don't want anyone to think I've developed a second personality along with everything else.....  Personally, although I haven't really researched it much, the idea of separating yourself from an injury or illness, by not seeing it as a part of you, makes a lot of sense to me.  It's not the person I want to be, or how I want to be defined, but it does feel like a massive part of me, something that is permanently attached right now, so I do have to acknowledge it.  I think it's probably even more common in 'short-term chronic illnesses' - i.e. I fully intend to recover.  I do know that I may not ever get to 100% again, but I know I will improve way beyond where I am now with the right medical support and treatment. So right now, it is a part of me, and right now, I feel it defines me in some ways....... or defines the life I live (or don't live) right now.  It is a part of me; but not quite.  It makes perfect sense to me that it is psychologically healthy to see it as something you are living with, yet also battling; something you have to figure out a way to coexist, while also planning its ultimate demise, and your ultimate victory!

(If this explanation  has just made something you hadn't even noticed even more complicated.... #sorrynotsorry - it's good to exercise the brain! ;-)

July: Positive Affirmations

Today (July 1st), Facebook popped up with a 'memory' of this blogpost: 'Don't look back' - written exactly 4 years ago.

As always, it seems, Facebook has a knack for 'remembering' - & reminding me of - the passage of time with not entirely loved memories. It's hard to believe I wrote this post FOUR years ago; and that I fell FIVE years ago last week (yup, facebook reminded me of that too.....)

 I often think we are so very lucky we cannot see what lies ahead. I was so concerned with my 'lack of progress' in just 3 months; I wonder what that 'past me' would have thought if I had know what the following years would bring? Such an ongoing challenge.... bigger than I could ever have imagined: more surgery, the intense treatments, investigations,  ongoing severe pain, a resurgence of Lyme symptoms - on more than one occasion - the evil bacteria taking advantage of my weakened body.  And on top of 'just' the health issues, an array of other challenges, all indirectly caused because of this damn shoulder....


However, I shared that post again today,  because the message is as true and relevant now as it ever was. Perhaps even moreso in some ways..... 

"Don't look back, you are not going that way."  

It has been a tough journey, and that continues to be the case; often feeling tougher as more time passes. But the world IS still spinning, one day still follows the next, and although it is slower than I ever thought possible, I am still putting one foot in front of the other, and moving forward  (with maybe a few sidesteps included at times..... perhaps more than a few. .... and maybe add some cha-cha in there too!). However, it is most definitely a reminder of a very important life lesson - we have to keep going; to keep moving forward in order to make progress, however slow, and frustrating, it may be.

It's also a reminder I *really* should stop neglecting my blog! So, as I declared on Facebook today,  I am aiming to fill my blog with 'life lessons' posts for July, with a focus on positive philosophies. I certainly could do with searching for positivity just now and reminding myself I CAN DO THIS!!

So I'm going to kickoff my month of positivity by sharing this awesome music video by Rico Franchi, someone I am proud to call a friend because of LYME DISEASE - while I would never have chosen to have Lyme, I have met some amazing people because of it and I am truly grateful we all have each other -boosting each other up; helping each other out; understanding each other, because of (such an awful!) shared experience; and most importantly, working together toards the same goals: awareness, improved treatment, and ultimately: a cure.

Rico's positive affirmation, and the title of his single is

"I'm getting better every day"

It's available on iTunes and 50% of sales will go to Caudwell Lyme, a UK-based Lyme charity.
See Rico's details HERE on the Lyme Disease UK website and BUY his single, the first release from his album Auditory Dreams (fab name, right?!) for just 79p HERE - remember 50% of that goes to support a UK Lyme charity!

Way to start the month with some positivity - an optimistic, motivational song AND a charitable donation! Build that positive karma!


And remember......

"The journey of a thousand miles 

begins with a single step."

- Lao Tzu -

Janus

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

After Winter Storm Janus

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


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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Ha ha... not even joking though!

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



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

.... for something BETTER!

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

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!

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.  

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

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

I wish I could hibernate

I was really struggling for something to write about tonight since I woke up, ate, and fell back asleep again. Again.  In fact, again again again.  Really not feeling very inspired today - just sore and sleepy. Then I came across this, and I think it just says it all.

 I even got this PJ top for xmas... and I had it on today :-)

Unfortunately, unlike polar bears, I keep getting hungry and waking up to eat. Wouldn't it be great if all that over-indulging over the holidays really could keep us going until April?! Proper hibernation......so appealing..... I am definitely one of those humans!

And like the polar bear:

Although why I have suddenly become almost entirely nocturnal in a week, I have no idea.  At least I was usually awake for (half) the afternoon and evening before I developed some sort of seasonal, pain-related narcolepsy.  I wish it would hit me at an appropriate time - i.e. bedtime! Maybe it's just my body telling me I need to sleep for a reason.... I think that seems to be my lesson of the week.  Night night!

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

Lyme disease: an amazing article

Back to the original purpose of my blog for today: 

 to help increase awareness of Lyme disease, especially in the UK

Yesterday the Herald (a Scottish newspaper) featured this article:

"Scientists and doctors unite to beat tick-bite disease"

The article is pretty short and to someone who has not spent hours, days, weeks, and months of their life researching, reading, fighting for treatment and battling Lyme disease on their own, it probably doesn't seem like such a big deal.  Basically, the headline says it all - scientists and doctors are going to develop guidelines to treat a disease that is increasing in prevalence... doesn't sound like anything ground-breaking is going on there...


But it is!! Believe it or not, there are NO official guidelines on how to treat Lyme in the UK.  Many doctors don't really know about it (my own GP, when I first mentioned Lyme disease and antibiotics said "I don't know if you use antibiotics for Lyme" as he reached for a book).  I also know a friend at home who has had two positive blood tests for Lyme (in itself a rarity, as getting a positive blood test is dependent on timing and the body's immune response) and was referred to a homeopath and a psychologist.  That's right... that's like testing positive for MRSA, or TB and being sent to a homeopath and a psychologist.  Bacterial infections are treated with antibiotics (or anti-microbials) - something that kills the little buggers.  If you could talk them out your system, I'd have been cured long ago!


Not only is the announcement significant, but the details in this short article are reported as clear facts about Lyme.  Again - that's amazing.  Prior to reading this article, the only place many of these pieces of information were discussed was in the context of the 'Lyme debate' - the use of the word 'chronic' in reference to Lyme disease is extremely controversial, but the Herald states what Lyme researchers have known for a long time - catch it early and one course of antibiotics usually prevents the infection spreading throughout the body, and therefore prevents severe illness; but if it is not caught early, it can affect major organs, cause chronic health issues and has even been attributed as cause of death (many more times than the one example mentioned in the article).


The article also states that it can be passed from a pregnant woman to her unborn child.  Again, this has been controversial and is generally denied by mainstream media/ infectious disease specialists; but there are many documented cases.


It also states that Lyme can mimic chronic fatigue syndrome symptoms and those of MS - hopefully paving the way for earlier Lyme testing in anyone presenting with symptoms that fall under the CFS umbrella. I do not know if this is still the case, but NICE (National Institute of Clinical Excellence) did, in recent years, issue specific guidelines which recommended AGAINST testing for Lyme in patients with CFS - so, again, to have that information reported as facts by a mainstream UK broadsheet is a breakthrough for Lyme patients.

That's only some of the symptoms of Lyme.  For a more comprehensive list and great information, check out the two UK charities who have worked so hard to raise awareness and educate people about Lyme: LDA and BADA-UK.

I'm not naive enough to think this is going to create a magic response, present a cure and 'fix' everyone dealing with Lyme.  Nobody knows how to do that.  But simply having this information out there makes it clear to me how much progress has been made in the UK in the last 6 years - Lyme has gone from something virtually unheard of to something people are now aware of, and medical professionals and scientists are accepting they need to deal with it.  That on its own is a breakthrough.

What can really help is sharing the article - the more people who are aware of Lyme, the fewer will become severely ill, as time passes and allows the spirochetes to infect multiple areas of the body.  If you read the article, share it with one other person - if everyone does that, awareness spreads even faster.

And let's hope the guidelines formed by this committee - which will include Lyme patients too - will be forward thinking, educational, and beneficial in treating and preventing the spread of Lyme disease.

In order to demonstrate how Lyme can affect people, I'm going to post some pictures/ illustrations from Pinterest that really do explain how Lyme (and other 'invisible illnesses') can make people feel.  They're not my usual optimistic, inspirational favourites, but they are important in illustrating how serious Lyme disease is, and how people feel and cope with systemic disease.

http://www.pinterest.com/gmun22/outofthelymelight-blogspot-com/

Backtrack: September, a busy month...

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

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

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

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

Hen Party

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

*          *          *          *          *

Wedding

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

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

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

       ~  Buddha