Lyme awareness: Lyme is...

Lyme disease awareness

This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.

A few awareness points for 2018:

Lyme symptoms can vary greatly from person to person. It depends on what areas of the body the infection attacks. Rather like when some people get a bad cold they end up with a sore throat, and others may end up with sore ears - we are all unique. This can make it especially difficult for doctors to diagnose, especially when lab tests are not reliable, and even moreso, when they are not done in the small window of time that *may* show an immune response to borrelia infection.

The list above is nowhere close to exhaustive - close to 200 individual symptoms have been linked to Lyme disease (see ILADS.org or lymediseaseuk.com for further details). 

However, imagine the list described, and imagine feeling all of that at once. Add on the worst hangover you can remember, and then imagine you ran a marathon too. You're close, but not quite there.

#LymeDiseaseAwareness

Simple things...

This year I started off talking about honesty.  I had nose-dived into the deep, dark rabbit hole of a Lyme disease relapse. I want to paint a genuine picture of what that really means - recently, a few articles followed celebrities announcing they had Lyme disease and called it a "fad disease" (or similar). It is not. I haven't written as much as I would have liked, to date, but hopefully each post, shared with honesty and a little trepidation, dispels that idea,  way before it enters any cultural psyche. Nobody with Lyme borreliosis would wish this disease on their worst enemy, let alone view it as 'fashionable'.

I started feeling the too-familiar, overwhelming, systemic fatigue; intolerable levels of pain, in my shoulder and throughout my body; a lot of 'brain fog'; and an increasing inability to do very much at all. Simple necessities - like a shower - left me completely floored.  It felt like I'd erased years of hard work and treatment.

Since I came back to the US and restarted specialist treatment - Lyme and shoulder PT - I have felt overall more optimistic.  I have wonderful physical therapists and we have finally started to see tiny steps of improvement (even more importantly, they say 'we' & use words like 'team' - & they actually talk to each other.... how sad that is so remarkable). 

I have a one-of-a-kind Lyme doctor, also a 'primary care' doctor (like a GP, but who 100% lives up to the better label!) who genuinely cares for me, covering every aspect of my health - and essentially, is really making inroads with tackling my Lyme relapse.

But, as I've said before - it's hard. Managing a PICC line (peripherally inserted central catheter - it goes into my arm and sits inside veins, eventually resting close to my heart so my medication gets 'right in there') requires careful care.

From Wikipedia 

 I have 2 'tubes' coming from my line and they need to be flushed with saline and heparin twice a day; plus I have to infuse with my IV medication every night, and keep on top of oral meds as well. Obviously it's critically important to keep it clean, dry and carefully wrapped.

My nurse took this for me during a dressing change.
Ordinarily, it's always covered!

Lyme treatment is pretty brutal - as I've mentioned elsewhere, and in the 'Lyme pages' on here. Details for another post. 

Invisible illness?

On top of that, I have physiotherapy three times a week - we have to be careful with the PICC, which is in my 'good' arm; and focus on my right (injured) side.  We're still working on connecting my brain with the muscles around my scapula and getting them to work. Since I came back, the positive results have really helped me push forward.  Waiting 5 years for some positive results is a really long time! So those positive baby steps have felt like giant leaps.

On a good day:
Gravity... stretching lats while supporting body;
 this pops my ribs back into place too;
 aim is hand on the floor -'above my head'.
Physio's aim is:
 1) to hold me up & not let me push it too much
2) to NEVER let me attempt to backwalkover out of this
because the good hand does touch the floor now
Me: "I'm sure gravity will just carry me over..."
 Him: "NOPE" *sits me back up*

(For perspective: 
Once, this was barely a stretch for me;
Now, this is the best range of motion
 in my arm for 6 years -still assisted.)

But this past week, I plateaued. Right from the beginning,  they told me this would be the normal pattern.... except it wasn't. I didn't plateau so much as fall right back off the cliff and start climbing from the bottom again.  So many unknown issues were discovered following that first surgery. 

So, really, this is good. It's FANTASTIC!  Finally, I am doing what they expected.... I improved a little, and I've stayed there - no tumbling back down the cliff.

BUT - no baby steps this week AND it's been a horrible Lyme week, with lots of herxing and general 'I want to crawl under the covers and come out when it's over' days. It turns out that's not a good combo, apparently...

I think 'meltdown' was the word my Dad used... 

Thanks Dad.

 Most of the time (like 99%) my Mum is my chauffeur, coffee buddy, shopping buddy, pedicure buddy; my chef, nurse, pharmacist.... all round carer & companion.  (When she gets old, I feel like the routine is already established, we'll just switch roles. Although hopefully there is A LOT of living for us both before that happens!! *EDIT: she read this & didn't know whether to laugh or cry....!)

But today she had a migraine, and my Dad was home in the afternoon... (he's delighted about that, I bet).  I had no appointments today; I had a 'to do' list - not a general 'I hope to do this soon' list, an actual 'wash my hair' - because I'm not even going to write how long it's been since I did that - and tidy up just a little and some other very necessary *simple things*. 

Not that simple. I struck out at number 1 (and so the 'meltdown' (this is not my word!) took over. The 'I can't do anything; I hate that 'do nothing' is an actual 'to do' thing because it has to be.... I can't do aaaaaaaanythiiiing......' kind of .... um, ok, meltdown, I suppose.  

Ultimately, with the male need to *do something* my dad said he would wash my hair (my skin is sensitive to the adhesives - this sensitive skin is another fantastic new side effect of the new Lyme meds *urgh* -  so I have a healing sore just under the PICC line and I can't stick the adhesive plaster over it. The insertion site us covered, and it's bandaged instead right now; but - while the full adhesive dressing isn't waterproof, it's not fabric - right now I'm reluctant to sit in a bath and get condensation on my skin/ the fabric dressing etc.). 

 When I was severely ill, before I even knew about Lyme disease, I used to get my hair washed over the kithen sink, lying on the worktop...

... in a different kitchen. I made it downstairs to see my dad setting up his 'station':

Creative home hairdressing :)

A gym/ thick yoga mat over the hob, so I could lie on it, and also because I'd wailed something about the hard surface and a sore shoulder blade - it was to make the worktop "softer". So it turns out even the simple things can make you smile on a really, really, rubbish day. And more amazingly,  my dad actually embraced some creative thinking (that was NOT football related).

And while he played hairdresser, 'supermum' had woken up and was ticking off the 'tidy up' part for me. So, with clean, wet hair, and puffy eyes, I collapsed back into bed, in a tidier room, where I'd quite honestly like to say I'm resolving not to move for a day or two - until this is over - but I've got physio tomorrow afternoon.... yay!

😞


I'm not sure who this quote is attributed to, but I'm attributing it to my mum here, because she says it constantly:

"This too, shall pass"

*EDIT Physio was kind of tough... then I got a migraine from hell. In between, I was up, out, dressed, and so (always good to take advantage of that!) Mum & I had coffee & went for pedicures - it's always nice to do something 'normal'! However, as I collapsed into bed,  and she later helped me with my infusion, she said, "This too, shall pass".... have you been reading my blog? "Recently? A new post? No..."

Too funny.

#takeabiteoutoflyme - my final post, pics and facts

The Lyme Disease Challenge continues throughout March......... Maybe beyond.....

March has been about the Lyme disease challenge: #takeabiteoutoflyme.  I had a few 'issues' with my shoulder/ scapula last week so I didn't manage to do the editing and writing for the sequence I'd planned - but here they are, better late than never!  I'm wrapping things up - for myself - in terms of the challenge because I am having wrist surgery on Friday.  I plan to write a quick post about that before then, right now it's back to Lyme awareness

Here are my final two photos and facts:

I don't often crossover between the Lyme FB page I set up and my personal stuff, but it seems appropriate here.  This was written for GoLymeGreen - the facebook page I will use to bombard everyone with more information come May, while also trying to talk you into changing your cover picture or profile picture green for Lyme awareness (if you could like the page, that would be great! :-D

Obviously this blog was set up to share my journey recovering from Lyme disease - and what a journey that has been.  It is definitely known for being tough and challenging, but flying 5000+ miles and then driving 650 miles for shoulder surgery isn't usually part of the package - never mind multiple shoulder surgeries, and now wrist surgery...........  But back to Lyme.  

A very quick version of my story is: 

2005: I went from being totally healthy, bounced everywhere, was doing my MSc with plans (& a scholarship) to do my PhD and absolutely loving my life to barely able to walk within weeks.  My mum moved back across the pond to help me - and by help me, I mean literally walk me up the stairs and in the door to university meetings; to cook for me, to wash my hair while I lay on the worktop with my head in the sink.  I went from bouncy to zero in record time.

2005-2008:  I applied for a visa that let me live with my parents in the US for an *intended short time* so I could 'recuperate' and then return to my PhD.  I continued to get sicker and sicker. I lost my scholarship. I could not walk.  I needed to use a wheelchair when we went out.  I had days where I was completely bedbound.  I had a 'diagnosis' of 'CFS'  - here's a look at that: "But you don't look sick...."

2009: By sheer luck my Dad got a job in Pennsylvania. I discovered Lyme Disease. I had my blood cultured and found out I had spirochetes in my blood - a type of bacterium that can 'screwdriver' its way through every cell in the body with its spiral-shaped 'tail'.  This infection had been taking over my body for at least 4 years  - it was systemic, making it much harder to treat.  I found a wonderful Lyme doctor.  I discovered Lyme disease had caused my 'CFS' symptoms; and I discovered that EVERYONE here actually knows what Lyme Disease is - even if they are also a bit sketchy on details; but let's face it, so are the 'experts''.  There is simply not enough known about Lyme disease although it is the most complex bacterial DNA that has ever been sequenced, and it is emerging as the number one growing infectious disease in the world.  That means it's important to pay attention - and, PLEASE, bite that lime!

2009 - now: I continue to work towards better health.  My health has improved exponentially.  I have had some complications and some set-backs, but I am determined to get healthy again - and determined to do all I can to increase awareness of this disease - which can cause permanent disability and death, if it is not treated.  

From GoLymeGreen:

(https://www.facebook.com/golymegreen2014)

I'll be honest, I didn't know how the challenge was going to go - were people going to ignore it because they'd never heard of Lyme disease, or because they simply can't do every 'challenge' for every charity that they come across online?  Would it be confined to the 'Lyme community' - patients and those who are very close to us and see, firsthand through our own suffering, how destructive Lyme can be?  How much life it steals from us? And would that really raise much money - those people (us!) are so busy trying to pay for expensive treatments, as much as we wish we could donate so much more to ILADS, we need to get better - and that's expensive.  Would this challenge really raise awareness?  If it was simply circulating within 'our' community, would we really be reaching others?  Would we really be increasing awareness?  Would it actually work?

My personal view was to give it a go anyway, to try to swamp every social media account I have with photos and nominations, to share others' photos and messages on here, and to do my bit to try to make it work, because the wonderful organisers of The LymeDisease Challenge  have worked so very hard in putting this together.  And they have done it! 

The number of people from around the world who have posted photos of them biting a lime shows just how MASSIVE a problem this is.  It shows how much this challenge - and even moreso, awareness - is needed. It shows that #LymeISeverywhere - it IS in Australia; is IS in the UK (everywhere, not just the hills of Scotland); according to various sources, I have even learned this month that the bacterium that causes Lyme has been found in Antarctic penguins!

I am touched, personally, by my friends and family who have taken part, who have shared a fact, dressed up in funny clothes (sorry, 'normal' lime green clothes - you know who you are!) and who have not just bitten into a lime; nor have they 'just' spread awareness - they have helped to create *HOPE*. 

(And they will be featured in a collage very soon - watch this space!)

*HOPE*, that even this crazy, strange disease that can take years to diagnose; is inexplicably ignored; is too often untreated for far too long, wreaking havoc on people's lives - destroying people's lives -  IS being talked about GLOBALLY.  Famous athletes and singers and celebrity personalities have all added their support to the campaign too - increasing awareness and spreading *HOPE* by reaching their fans across social media.  We have *HOPE*, that by increasing awareness and by raising funds, there will one day, be an effective treatment for Lyme - and ideally one that isn't as bad as the bloody disease itself!  *HOPE* for a test that can accurately diagnose Lyme. *HOPE* for a treatment that doesn't take YEARS to eliminate years of bacterial colonisation, damage, and destruction in the body.  *HOPE* that people will understand a little more about Lyme because they are learning facts about it.  *HOPE* that this will create more understanding - for those of us dealing with an illness that we struggle so much with in every way.  That *HOPE* is so important. *HOPE* is life saving; it is what we live for. *HOPE* is what keeps us going. Along with those who support us. Sometimes, *HOPE* is what keeps our loved ones going too.

So please, if you read this, consider yourself nominated. Go to lymdiseasechallenge.org and follow the directions - #takeabiteoutoflyme, post a funny picture with the hashtag: 

#takeabiteoutoflyme 

and make it public so everyone can see. Share it on twitter, instagram, personal blogs - anywhere! - and don't forget to nominate others to do the same! Help us spread awareness, and please consider donating if you can. Please help us continue to *HOPE*.

Please visit www.lymediseasechallenge.org to learn more and please help spread awareness of Lyme disease.  

Lyme disease has stolen the last decade of my life - you can help prevent it doing that to anyone else.

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

  ~ Emily Dickinson

Empty Red Shoes: Increasing Awareness of Lyme & Invisible Illnesses

In memory of Australian Lyme patient, Theda Myint, the Worldwide Lyme Borreliosis Association (more info can be read via the link) held the second international 'Red Shoe Day' on 25th July 2014 (spanning multiple dates to accommodate global time differences)*.  Their goal is to create an annual day of remembrance for people who have lost their lives to Lyme Disease and other invisible illnesses.  The Facebook page created for the event listed almost 1000 people as 'attending' and invited people from all around the world to post photographs of them wearing red shoes to the page - of which there are now hundreds.

*Edit: 2014 was not the second international red shoe day, but the second time red shoes were worn to commemorate Theda - her friends decided to wear red shoes to celebrate her life on the day they said goodbye to her.  This year is the first year it went global.  


Reading Theda's story - and all stories about those who have lost their battle with Lyme disease - evokes an overwhelming emotional reaction in me.  I don't think there is a single time I have read about a stranger, someone I never knew, who has suffered and died from Lyme Disease, or CFS/ME (Theda's original diagnosis, and also mine) and not cried.  There is never a time when I haven't thought: that could have been me.  Because it could have been. 


And: that should have been prevented.  Because it could have been.


This reaction is why most people with any kind of invisible illness want to increase awareness and foster understanding as much as we want (a) cure(s).  Many people are unaware that Lyme Disease, for example, can be fatal.  Raising awareness means more people can get early treatment, fewer people will die from an infection that CAN (in most cases) be easily treated in its early stages.  And stories like Theda's will disappear.


If it had been me, I would be very proud of my family and friends if they started a worldwide movement to support others.  Her friends chose red shoes (not 'Lyme' green ones) because they were her favourite colour of shoe.  They also feel red shoes can be all-encompassing, representing all invisible illnesses.

I wore my own red shoes on Friday and hopefully next year anyone reading this will wear red shoes too.

(Actually, lacking in red shoes, I got creative this year)

I want to share a beautifully poignant photograph posted to the Red Shoe Day Facebook page.  It perfectly illustrates exactly what Red Shoe Day is about.


I wrote about it here on the GoLymeGreen blog: Empty Red Shoes :

Photograph by Marianne Verheyen

While this is not a painting, it is most definitely a work of art, and I feel this quote is both sad and beautiful, like the photograph.  They seem to go perfectly together, as well as reflecting life lived with chronic illness.

I never paint dreams or nightmares, I paint my own reality

~ Frida Kahlo

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/

Chronic pain: golf balls, marbles, pebbles & sand

I saw a quote on  website recently that really made me think. It said:

"my life is full of pain"

I stared at it for a while, even kept the tab open for several days, going back to it every now and then and wondering what I really thought about it.

I thought a lot, so bear with me...

It made me think about this story that, throughout the cyberyears, has appeared in my inbox many times and (more recently) has popped up on various types of social media. True story, or urban myth, I like it.  It goes something like this:

A professor is giving a lecture to a large group of students.  He starts the lecture by holding up an empty jar which he then fills will golf balls.  He asks the students if the jar is full; they reply yes, it is full.  Then he opens another box on his desk with marbles inside.  He pours some marbles into the jar, watching them fill the gaps between the golf balls.  Again, he asks if the jar is full. (I'm hopeful here that being university students, they would see where this is going and not answer yes here, so in my version they're going to just watch expectantly as he produces another box.)  It contains tiny pebbles (I personally imagine these to be like ones used in a fish tank) which he pours into the jar and they trickle into the gaps between the golf balls and the marbles. At this point, the jar appears to be full, and there are no more boxes on the table.  He asks the students again: is the jar full? He then reaches into his desk drawer and pulls out a bag of sand. He slowly pours the bag of sand into the jar, watching the tiny grains fill every crack and crevice between the stones, marbles, and golf balls.  Now is the jar full?  At this point, the students agree: yes, the jar is full.  The professor, however, has one last trick.  He produces a bottle of beer from the drawer, opens it and pours it into the jar where the liquid is soaked up by the sand.

The analogy (in the version I have seen) is that the jar represents life.  The golf balls are the most important things in your life - friends, family, pets, health, people you care about and have a responsibility to.  The marbles represent other responsibilities in your life such as work, studying, volunteering or other important commitments.  The pebbles represent the smaller essentials - a social life, relaxation, hobbies - whatever is required for some 'me' time to keep you sane(!).  The sand is everything else - errands, tasks, bills, worries, stress - somehow, these things will fit in somewhere.  In the version I read, at the end one student asks about the beer.  The professor replies that no matter how busy your life is, there is always time for a beer with a friend.

I've always liked the analogy.  Strangely, being ill for such a long time, and being away from a 'normal' reality during a time when most people are just throwing themselves into it (i.e. our twenties), has given me time to really reflect on the important things in life.  So breaking it down visually,  I think, is very effective at making people really stop and think about what is important, and realise that you can alter your perspective, and your priorities, depending on what way you look at your life.

However, the quote at the top of this post made me think about this analogy differently.  I think it can also be used to explain chronic pain (or, by extension, any chronic medical condition).

Pain is a horrible thing.  Everyone knows that.  But most pain is transient - even the pain of a broken bone, or childbirth, is temporary, however painful it may be at the time; the searing agony of stubbing your toe is over in seconds; the sting of a papercut always feels like the worst thing ever when it happens (or when you get lemon juice or alcoholic hand sanitizer in it later!), but again, after a day or so, it's healed and forgotten about.  Emotional pain, depression, or severe anxiety, are harder to make comparisons with, as everyone has very different personal responses to different situations, or to internal emotional pain (although physical pain is highly subjective too); but I think the analogy has relevance here as well.

Chronic pain - physical or emotional (and/or both, as they can be inextricably linked) - is impossible to truly understand without experiencing it.  It is wearing, exhausting, draining, energy-sapping, emotionally challenging.  It can be mind-freezing, gut-wrenching, pillow-biting; for me, it has rendered me speechless, breathless, sobbing, nauseated, dizzy, light headed, faint, crying, moaning, whimpering... at its very worst; and at all times, a dull, constant, heavy ache - like another, heavier, body, attached like a magnetic imaginary twin, permanently pulling you down.

At my last specialist physio appointment, I decided it would be helpful to 'draw my pain', to map it out and visualise it - I thought it would be simpler than spending an eternity trying to describe all the facets of it.  Here are my drawings:

Left: Right scapula pain: top drawing - looking at the scapula from the back; bottom drawing - looking at the scapula from the front (as if you can see through the chest); Right: drawing showing pain in spine and ribs - as if looking from the back. (The colours correspond with different types of pain, explained in the colour-coded descriptions.)

To be honest, I'm not entirely sure what my physio made of it.  I kind of got the distinct impression most of his adult patients don't hand him pictures they've drawn and coloured especially for him...  He studied it silently for several minutes (as I quietly wondered if I'd crossed a line and might require psychiatric evaluation) and came to the perfect conclusion: "It's a mess.  Your shoulder's still screaming at you and everything hurts." In a nutshell.  But he kept my drawings.

So, back to the quote: "my life is full of pain".  Most of the time right now, I feel like my pain dominates.  No matter what I do, however much I (usually) enjoy it, or more typically right now, force myself to do it because I do (I WILL make myself) enjoy it - the pain is still there.  It can be ferocious, overwhelming, sometimes it hits me like a freight train - one minute I can be making lunch, the next minute I'm sitting on the kitchen floor, watching the black stars sparkle above me, sweating, and wondering exactly how I got down here (again).  The hardest thing for me is not knowing when that freight train is coming - sometimes it can be a tiny movement that I'm sure I did a dozen times the previous day; others it's fatigue - when I just push my(stubborn)self a little bit too hard; or try to do a little bit too much in a day.

And, yes, it's frustrating, it drives me crazy, I wish it would just simply disappear; sometimes I cry with pain - still; other times, with sheer frustration. But despite all that - and I've described it as much as possible to really make this point - despite all that, I would NEVER describe my life as being filled with pain.

Back to the analogy... Some days, the pain is in the golf balls - these are the worst days, where the pain is big, angry, dominating, and getting in the way of everything else; but on those days I still have space for some marbles and pebbles - emails from friends, that always cheer me up, a good TV show streamed online, some chocolate, and perhaps rather unhealthily (but unfortunately necessary) my concoction of pain medications and topical pain creams and gels... and my life-saving ice machine.  The sand - as in the life analogy, the annoying things are not priorities on those days, bills, emails, whatever I have to do, it can always wait until tomorrow.

(This should always go without saying, but my Mum is always a golf ball - the most important thing to me on bad days and good days, and a constant presence and support throughout.)

On other days, the pain is the sand - allowing me to enjoy the big things a bit more, but - rather like when you go to the beach - the sand still finds its way into everything!  But, if you go to the beach, you're going to get sandy... it doesn't stop you going.  Right now, everything I do increases my pain and I do have to judge how much I can tolerate and what is 'worth it' - and finding out where that line is has been close to impossible; it seems to change every day - however, it's is still not going to stop me trying.

So, for anyone who thinks their life is too full of pain to make space for anything else, remember the glass jar with the (almost) infinite capacity.  Life is what we make it, and no-one ever said it was easy.

And of course, there's always space for a cup of herbal tea with a friend... even if it's on skype... with me curled up in bed attached to my ice machine....

Be careful when you fight the monsters, lest you become one.

  ~  Friedrich Nietzsche

Back on the rollercoaster

Well, after my great progress over the past couple of weeks, last weekend was definitely a low point again - the equivalent of making that slow, anticipatory climb right before the rollercoaster sends you racing back down to earth... twisting, backwards, and upside down.  Hopefully, to soon begin another slow climb...

Last Saturday night I was doing my exercises - as usual - before I went to bed. My sleep patterns are so mixed up right now  and my doctor just says sleep when I can, so I do, with not much other choice - I've even given up on the sleeping tablets at the moment as they are simply not working anymore.  So, I'd had a shower - warmed my muscles up - got ready for bed around midnight and started on the exercises I've been doing for the past couple of weeks.

I worked through my 'easy' ones first, leaving the harder ones until the end - my usual routine; it loosens up my movements and addresses my range-of-motion exercises and then I do my (minimal) strength exercises after that.  During my baby-girly-press-ups I felt a bit of a twinge on the top of my shoulder - not where I usually get pain, so I took a break  (this usually involves me on my knees, pulling my arm in tight to my body, and head on the floor - this is not uncommon) and then decided to give the next exercise a go.  The pain didn't seem to be easing really, but because it wasn't my usual 'hotspots' of pain I tried to work through it a bit.  The next two exercises have me on my hands and knees - gave it one shot and decided that wasn't going to happen either.  It's been a while since I've had to give up on my exercises, and I am always aware of making the decision - trying really hard to decide if it is actually better to push through, or to give up.  And I hate giving up.  It's really not in my nature.  However, my body was beginning to dictate so I grudgingly decided it was the right thing to do.

As the pain was increasing though, the one thought running round my spinning head, as I lay face down on the floor was: I hope I can still move my arm.  I have to check. I have to lift it.  Just to check....  So I thought really hard about it and realised that even my left arm felt like a tonne weight - it is so difficult to describe what pain can do... I would say I've experienced pain in my life - broken ribs, fractured sternum, fractured wrist, fractured thumb (among others - mostly gymnastic-related); but not forgetting the infinite list of Lyme symptoms associated with pain...  But what I have now really should have its own word.  It's like saying you're "tired" when you have Lyme (or anything that causes major medical fatigue... like chronic pain), when what you really mean is "I feel like some vampire-type creature who feeds on energy instead of blood has emptied my body and left me devoid of any iota of energy."  

There's just not really a word for it. "Pain" simply isn't enough.

Still determined to make sure I hadn't done any major damage (aaarrrrgghhhh!!) and could still move my arm I lay on my stomach (where I had pretty much collapsed anyway) and reverted to my previous progression - pushing my arms up with my fingertips - still lifting them; still using the muscles, but with some support.  I struggled, but I managed.  Relieved, I pushed up one more time, just to be sure and then it really HIT me. $%^# !! The pain from the muscles' contractions seared down the lateral (right) side of my scapula and radiated deep into my body between my scapula and my thorax.  The pain was like a stone smashing a pane of glass - it just seemed to splinter instantaneously, and simultaneously, in every direction.  

I lay on the ground, my arm bent and tucked in at my side - my protective position - and waited for the pain to subside.  I'm really not sure how long I lay there; I reckon it was about 20-30 minutes but my pain was not calming down, it was definitely getting worse.  At some point, I realised I needed ice, but given I was lying face down with my eyes closed and the room still spinning; feeling so nauseated I could taste it; and was completely drenched in sweat caused by the pain; I did realise going downstairs was not an option.  I had to wake my parents.

For the first time since the two weeks immediately after my surgery, I woke my parents around 1am.  I half-crawled, half-clutched at the walls, got to their bedroom door and struggled to make my voice loud enough to wake them.

By the time they got to me I was sitting on the wee sofa at the bottom of my bed, holding my arm - it felt like I was holding it so it wouldn't fall off.  By this point, my pain was beyond words.  I was sobbing, sweat was literally dripping down my face and upper body and speaking to explain what had happened was a struggle.

My Dad filled my ice machine and hot water bottle for me and my Mum sat with me trying to get me to control my breathing - seemingly impossible.  She got me the meds that would help, applied the prescription pain cream I've just got and helped me up on to my jelly legs and into  bed.  She sat with me for about an hour, calming me down.  It took a long time to stop sobbing, and to breathe normally.  My arm felt 'odd' - as if it wasn't really connected to my body properly.  She did some reiki on my arm and on my head, and eventually the drugs worked, my breathing became steadier, and I did begin to relax.

It all sounds so ridiculous, so dramatic and so difficult to understand why I couldn't control it.  I have learned this year that these are all parasympathetic responses to pain - something I'm not in control of, no matter how hard I try to fight it:  it's my brain's reaction to my body's pain.

The next day I was very sore and absolutely exhausted from it all.  Again, it sounds silly to say my body had been through a trauma, but again, that's what's been explained to me.  When they say someone is treated for "shock" at the scene of an accident - it's a genuine physical response to a traumatic event - not something we can control (despite my best efforts this year).  We had friends coming for lunch the next day.  I managed to get dressed - sweatpants and a T-shirt, but it was a step up from my PJs.  I even managed to put a little bronzer and blusher on the grey face staring back at me from the mirror.  Despite that, when our friends arrived, he took one look at me and said, "you don't look too good" - and I looked better than I felt!

It took me a few days to get over that exhausted, physical-trauma feeling and for my pain levels to calm down a little.  I'm still not 'over it' and am hoping it is a blip more than a set back.

My physio thinks that it is likely I broke up some scar tissue with the movement I did.  Why with the same exercises I've been doing?  No idea.  He has been using ultrasound again for a few weeks, and I am taking a supplement (called Lumbrokinase) that is supposed to help with scar tissue; it's possible these things are working and the scar tissue has been weakened and as a result ripped apart.  In the long term, this is a good thing - I need my scar tissue broken up to 'unstick' my frozen scapula, but ultimately it is still tissue ripping apart inside me, and, yes, that hurts much as you'd imagine!  It can cause severe pain - although my reaction was extreme, even for that, apparently.... however, it was pointed out to me that nothing in all of this has been 'normal' - it really doesn't even have a precedent.  It still always raises the question of RSD, or "RSD-type pain" as my therapists prefer (as do I).

In addition, there seem to be some nerve-related issues going on, whether that was also a cause, or is a consequence is unclear.  My right hand burns and has numb patches.  My right arm feels not quite attached to my body - it is a strange sensation, difficult to explain. On Monday at physio, Angelo took measurements as my upper arm was quite swollen. Where it should be atrophied and skinny from lack of use, it still measures 1cm-2cm thicker than my left (good) arm at the same points. I have a compression bandage on my entire right arm now to see if that can help with any fluid or oedema.  It does help ease the burning most of the time.

So right now I am back to the simple ROM movements again, not too much stress on my shoulder and giving my body some time to recover.  Frustrating doesn't even begin to cover  it.

I did try some of the strength exercises under supervision at my physio appointment today, but I couldn't do them all and I didn't feel good.  By the time I'd walked from the clinic to the car, and my Mum had driven (almost) out of the car park, I had to ask her to park again to let my anti-nausea tablet work, as I had jelly legs again and felt like I could be sick from the car moving. (I was able to take enough meds to help things ease off, and we still went for pedicures as planned - something enjoyable and relaxing anyway... and happy pink summery toes now it is flip flop weather!!)

On the positive side, although I seem weaker than before, testing my muscles has shown that I have not done any major damage - my movements are still all there, and my 'new' muscles are still working (except lifting my arm - it is still too painful to have it lifted passively, so no active lifting right now either) and the actual surgical repair is still looking good - a big relief.

The question remains though: why do I still have so much pain on the lateral side?  And why is my pain response still so severe? These have been the main questions for months now - and the answers are still elusive.... and I still feel every week seems to bring more questions.

Which leads me to some wise words from my favourite genius:

“The important thing is not to stop questioning. Curiosity has its own reason for existing.”

  ~ Albert Einstein