Mindful November

I had this plan to try to really focus on my blog this month. A project, a post a day - something to aim for, however small it may seem. My health seems to be dominating everything right now, and making it a thousand times more difficult to be even the slightest bit productive… or organised, or tidy, or really 'functional' on a daily basis.  It feels like I am either at some form of medical appointment, most often physical therapy; infusing my medications or flushing my PICC line; or sleeping.

I thought taking photographs would be an easier way to set a realistic goal, and then I came across this 'MindfulNovember' on instagram so adding a little bit of guidance and ready-made inspiration seems like a good combo! Plus actively employing some mindfulness everyday has  to be beneficial.

"Mindfulness is to keep our consciousness alive to present reality"    

~ Thich Nhat Hanh ~

It's October!

Really, October! I guess most people are well aware of that fact, since it's a very common and normal thing to know...plus shops are full of Halloween 'decor' and pumpkins, for those of us who do need a reminder since I seem to have 3 day weeks (physical therapy) & 4 days sleeping... or close enough! Time seems to just fly past, in one way. Some days do seem reeeeallly long. So it's probably not necessary to remind anyone else, but... my blog, my title, my reminder.... my exclamation mark! My:  'I can't believe I last posted in AUGUST!'

I really thought I would at least manage a blog post a week... then a month.... then, well I guess I slept a lot! (It's healing!)  I have had various ideas - mainly: I should blog with photos, it's easier. So I do have collections of photos from various things we've tried, along with a few stories and I'm aiming to 'catch up' to the end of October... by the end of October 😀.... mainly by organising and posting the assortment of photographs I've been planning to use.   Hopefully afterwards, I will actually manage to take advantage of my good days and engage a bit more !(Although good days are somewhat fewer right now, but I'm hopeful that means we are getting to the deepest parts of spirochaetal infection and pulverising the little Lyme-hell inducing buggers!). 

So, an overview of the past 3 months...

When I arrived here in May, we began 'deconstructing' my body and its somewhat obstinate, definitely obscure, health issues again. We made a plan (by that I mean I had about a dozen medical appointments) and we moved forward ... then we adapted, made a new plan and pushed on with that.... I blogged a few times about what we were doing and... now it's October!!

We kept going... made a plan, pushed on....then we stepped back, puzzled over some stuff, made a new plan and pushed on with that... then.... we remembered why the word plan has never really been the best word dealing with my body and its rollercoaster recovery. We 'decided' (like it was a choice) to go with my gut - which has been pretty damn good in this whole saga; it's so important to remember to listen to your body and trust your instincts when it's your body that you can feel.... screaming at you!

So right now, and for the past several weeks, physical therapy has been purely working with 'how I feel today'. There is no doubt that the ongoing IV Lyme treatment has systemic effects - it's going directly into my blood to target infection at the deepest possible level, and spirochetes can affect the entire body, especially when left to run (spiral/ drill) riot, unchecked throughout the entire body AGAIN - of course it's affecting everything!  


But my PT can "feel a difference" in all my muscles  (good side included) on weeks that the Lyme treatment affects me more (it goes in cycles). That wasn't really something I had thought about, but it's a HUGE validation of something usually only I can feel - most importantly,  it means it's working (torturously!).

So, I have continued to infuse Lyme medication every day, as part of my protocol (I have oral meds and some herbs & supplements too); I have continued to go to PT three times a week - sometimes I make it into the gym-area, mainly for some lower body strength training; other times I hardly move from the treatment bed while knots and spasms are worked out of my muscles; and dislocated ribs and twisted bones are eased back into place. (Yeah, that's fun.)

And so I continue on this path for now - things are so much better than at the beginning of the year - unbelievably so! - but they still have a long way to go. We have positive and encouraging signs that things are working. And I have complete trust in my 'team' of medical professionals here,  who offer such fantastic support - even after all this time.

The photos are more interesting, I promise. And coming soon....!

June: Plans, PICC lines, & physiotherapy

I did say May was spent forming plans. I really intended to write in more details, but my brain had other ideas - mainly SLEEP.  May was pretty exhausting - filled with medical appointments; balanced by record-breaking snoozing.  Time flies though - especially when you're unconscious 50% of the time!


June saw those plans being put into place, so here is an overview.  Of course, I have more details, but I'm trying not to post a novel here, so details to follow....  I can definitely say that, despite the hellish processes, things are overall more positive than they have felt for a long time.  There is still a long way to go to reach that light at the end of the tunnel, but it's been turned back on again.  I have a supportive medical team around me - PLANS(!) - and I feel there is hope again. And that is probably the best thing I could hope to say and feel right now.

pinterest.com/gmun22

1. Physiotherapy

This is the easy one, so I'll start here. In short, I still need a LOT of one-to-one, careful, 'active-assisted motion' physiotherapy (or 'physical therapy' - since I'm back in the land of American English).

Since I arrived in the US, I've seen my specialist scapular PT; my nerve-ortho's physician's assistant (he mainly sees patients for procedures / pre-surgical appointments; his PA is fab); and seeing my regular physio a few times a week, I would say physio is going well.


 'Well' being relative to my entire injury; 'well' is nowhere close to 'functional' yet.  'Well' is tolerating careful, gentle exercises, focusing still on increasing neuromuscular pathways and increasing movement and strength without increasing pain. It's a fine line. It's an incredibly difficult balance to find, but all things considered, 6 years on from my fall, I can finally say progress appears to be taking some (very tiny) steps in the right direction.

PT motivation required!
#goodvibetribe
#IdontsweatIsparkle
#thisismytootiredtofunctionshirt
(some honest days!)
#makeithappen
#noexcuses
#mascara&coffee
(mainly because they didn't have 'cap & sunglasses'!)
I think they help!

2. Lyme relapse: PICC line & IV antibiotics 

It was a unanimous decision (Dr, me, & my mum - all prior to any discussion) to address my Lyme symptoms as aggressively as possible, with IV antibiotics for the first time. My symptoms have drastically increased and I have majorly relapsed -  I would say I feel as bad as when I first started Lyme treatment. IV is the way to hit the infection the hardest - in combo with some other meds.


My response to the first week of treatment 100% confirmed it's been the right decision. There is also a possibility a resurgence of infection may be a contributing factor to my shoulder/ upper body pain (borrelia bacteria like scar tissue.... I have a whole load of that).  This also means certain other therapies - in particular, aquatherapy, for my shoulder, have to wait since the PICC line has to be protected (kept clean, dry, no massive weight-lifting etc.... ha ha) to avoid any risk of infection.  Some things are just impossible to do at the same time.


It makes more sense to focus on healing my entire body, and hopefully reduce some pain levels/ pain in specific areas first. This means - in the PLAN - I *should* potentially remove a huge stress on my body, and be able to battle 'just' the shoulder issues instead of my body fighting battles on too many fronts. If it does reduce pain that will be a major bonus.


I continue to see my (awesome) physio three times a week and we work on making my muscles work individually,  and gently strengthening them - that's way more intensive than it sounds!  So while I can continue very specific shoulder work, the two things are inextricably linked.  I'm trying to keep things as balanced as I can - physio is essential, but recovering from this Lyme relapse will hopefully make everything easier (used relatively!).


I won't lie, this is hard. On physio days, I wake up and so many times I have thought 'I can't go today.... I could cancel...' - but I grab one of those damn T-shirts and I go. And I survive, even if I do often fall asleep afterwards...

And.... to the PICC line. I think, right now this is easier to summarise in these photos:

PICC line explanation
 from Wikipedia 

My first week with my PICC is below, in a photo collage - going with 'the picture is worth a thousand words' thing.  And, yes, my bruises are absolutely worth documenting because I don't actually bruise that easily & having the line placed was not fun!  The doctor told me my veins were "uncooperative" and apparently I have "small veins".  I did however take more offence at being told my muscle was small..... of course I just couldn't stop myself - "I used to be strong.... I was an acrobat... I used to lift PEOPLE!"  Priorities.


When a doctor apologises several times during a procedure, and again afterwards, explaining it "shouldn't have taken that long" - and his PAs/nurses begin to feel like they're becoming cheerleaders, repeating, "you're doing SO well... SO well..." I really don't think it has the desired effect! Honestly, it wasn't really that bad (once it was over!), it just definitely was 'more' than I expected.  But - it's in, the port is sewn to my skin (black stitches through the holes on the purple bit); and this should mean it's there to stay for as long as I need it. Fingers crossed!


I have way more to say about that, but I think this works for an overview:

PICC line: week one
(There is a clear plaster over the insertion area so it can be monitored.)

* I wrote most of this a few weeks ago - it needed some editing, but it does pretty much sum up June.  However, here's my most recent additional comments a few weeks into this treatment.


IV antibiotic treatment (in combo with other stuff) is now heading into week 5. It really does require an entire post.  I'm just adding a little up-to-the-minute update because I am not exactly in super-efficient mode with all this! (Whatever the total opposite is - that's me, except with lists because apparently some part of my brain still thinks I might actually accomplish multiple things a day if I write them down.  I consider it living in hope....! However, I have come to terms with the fact that the lists are more 'hope-to' lists than regular 'to-do' lists.  Mostly.)


Briefly, after a few more weeks, I still feel strongly that the IV antibiotics have been the best decision / option for right now.  This is confirmed by the fact that my symptoms have been exacerbated in (horrid) ways I absolutely did not anticipate and I am well and truly floored by this treatment. It is hard..... It is harder than anything I have ever done before (re. Lyme treatments) - and I really thought I had 'been there, done that & (literally) got the Lyme T-shirt'.  Ultimately, this hopefully means I am attacking things in a far deeper way than I ever have before.  So, it continues.  It is a strange relief to realise many seemingly disparate things fit together; but it is too overwhelming to look at the big picture right now.  I am very much surviving one day at a time - and hopefully each day that means I am taking a step closer to where I want to be.


An old favourite seems perfectly fitting:

"That which does not kill you makes you stronger"
~ Nietzsche ~

Here I go again...........

Wrist Surgery


As I sit and type at 7.30am - for a change, after I have been asleep and not before! I am all ready to leave shortly for the surgery centre - today I am having surgery on my wrist.  I am up early, ready (no makeup, no 'beauty products like perfume/ body cream etc.; no food and nothing to drink) - incredibly sexist comment - this must be what it feels like when a man gets ready. I did sort out my clothes last night - although still have no idea what I'll actually be able to put on afterwards - but I don't even think it took me 5 minutes to get ready. Add a couple more minutes for when I brush my teeth.

The reason I am ready early is because we have snow forecast.  Between 3 and 5 inches have to fall -"starting around the end of the morning rush hour".  At my last appointment with the surgeon, it took us 2 hours to do a usually-40 minute journey because we were driving through an ice storm of freezing rain.  Well, crawling really, long with everyone else.  I don't have to be there until 10 and usually leaving at 9 would give loads of time, but according to the weather-travel man, this is what Rt 202 looks like right now:

And that is the road we are going on.  Actually when I woke up my first thought was
'has it snowed yet?!' and I looked out the window and it hadn't, I felt relieved - we know it's probably not going to be great on the way back later, but I definitely want to get there on time. Now, everything is white outside my window.  I reckon about 1/2" of snow has fallen in 20 minutes.  And believe it or not, I'm just ready to go when everyone else is ready! (I am always forgetting how long things take me just now and constantly running late.)


Anyway.............  A few of my friends have asked me to update them on the wrist surgery, and I am sorry for not writing personal replies to every email - I hope this little update will cover it!


It's really not a big deal (so I'm told).  When I fell and landed with my weight on my left wrist - my 'good' wrist - last November I joked that at least I hadn't made the other side worse.  After calling it a sprain for 4 months while the shooting pains from elbow to fingertips intensified and became more tingly, and constantly achy; and while my ability to do....... pretty much anything involving any strength from either arm........... all but disappeared; my physio and I decided perhaps it would be wise to see an ortho.  

I can also advise - if you have an injury, and you fall, do everything possible to throw yourself on the already injured side.  ONE good side is definitely a necessity (yes, two would be better).

Initially I saw a general ortho, he ordered wrist/ arm/hand/elbow x-rays and MRIs but nothing obvious showed up.  I wish I could say I take comfort in that, but it has unfortunately happened in the past.......... for example when the rhomboids and trapezius detached from my scapula! And a few times over the years with gymnastics injuries - usually broken bones that didn't show up, but became apparent later.  I'd like to think anything major would show up, but I also know not to place all faith in medical imaging.

Back to the wrist........ after more physio, some exercises, strength building etc., it still was not getting better and I was sent off to a hand specialist.  I opted to continue with PT for a while and see if it would continue to improve - there are definitely areas that were painful initially that are improved now; but there are also areas that have been sore the entire time, and movements I can't do with it - especially involving my thumb.  When I saw the surgeon again a couple of weeks ago, we talked about surgery again and he told me what he expects to find inside.

He also said - and my brain keeps telling me -  it's really not a big deal after the other ones  I've had (although I do keep reminding myself it WILL still hurt, since he will be going in through multiple incisions and cutting stuff up - I don't want to wake up in recovery and think......... hold on a minute, this one wasn't going to hurt.... and it does!!  But it certainly shouldn't be as bad as the last one even, never mind the first one - and it should heal much faster).  His plan is to go into my wrist (on the top) arthroscopically and clear out any inflammation or dead bits of tissue that may have accumulated, and - he thinks - probably repair a couple of ligaments that are possibly torn a little, as well as 'releasing' a couple of tendons around my thumb - it seems they are being compressed, causing pain and the tingling sensations.  Somehow they just make a gap a bit bigger......... I'm not exactly sure how, and I'd prefer to learn about that AFTER it's over - works better for me, for the gory bits (which only become gory once I have the surgery scheduled and I will be the one in that OR; up until that point, everything I read is fascinating!).


This week, my lower arm and hand have sporadically been swelling up and producing little bruises.  I do think it's sorer than I really think it is (if that makes sense) because I'm on such strong medication because of my right shoulder, I shouldn't really be able to feel minor pain - but I can most definitely feel this, which is not good.  Even my physio can feel it grinding and clunking and has taken to making his 'puzzled face' this week with the sudden bruising - after 4 months!  And I don't really bruise........  Hopefully the surgeon has it spot on and will just go in, tidy it up, I'll be sore for a couple of weeks and then I should be fine - doing PT and strengthening it, but both surgeon and PT think that this will 'fix' things; I will have minimum, if any, pain after it has been fixed - and it will be/ should be fixed; he doesn't expect me to have any further problems with it as long as the surgery goes as he expects.

I feel that it is just screaming at me: FIX ME! and - let me stress this very carefully - I NEED ONE GOOD SIDE!!

Anyway, hopefully all goes to plan and I will sleep through most of the weekend and feel fine (on that side of my body) pretty quickly.  I do go back for post-op on Tuesday for him to check it and change my bandages and hopefully he will then give the ok to start PT after a week.

So that's a pretty boring blog post, an update, as promised, I suppose.  When I can, I will update again/ be in touch.

Have fun with those limes! ;-)



If I've learned anything, it's this -and I can't wait to get mine back; I am working SO hard on it:

The first wealth is health!

~ Ralph Waldo Emerson

t minus 18 days

I very much realise that there are people living in a far more hellish situation than I am; but right now, today, I am going through my own kind of hell.  My body is screaming at me again, but I am using every ounce of mental effort not to question that; to focus on the physical effort for now - persevering, determined to give this my best shot, to see if I can break through this pain barrier and create a return of 'normal' movement patterns.  But it is hard.  Today, my body is paying for being pushed to its limit at physio yesterday; but I have to keep at it and push it to its limit again today.  I genuinely don't know if it is "killing me or... making me stronger" but I have to work at it, give it time and effort before we will know.  So it does feel like working through my own, physical, hell - the pain is my hell and if working through it will get rid of it (even improve it slightly), right now, that is my incentive, my reason to keep going.

"If you're going through hell, keep going."

~ Winston Churchill ~

LISTEN!!

I read an article towards the end of last year that suggested a number of things you could do every day/week to "make yourself a better person in 5 years".  I'm not exactly sure how measurable that is, or exactly how "better person" might be defined (ha, perhaps I understood experiment design and statistics classes a little better than I thought), but some of the suggestions seemed like good little 'challenges' to focus on.  

One of them was to have a computer-free day a week (technically think it was 'tech free', but I'm focusing on the computer/ internet part of that - phones allowed) so I decided to have 'tech free Tuesday'.  I'd like to say I was very disciplined and that's the reason I didn't write my blog on Tuesday night for Wednesday's post, but in all honesty, this news junkie checked BBC news on her phone, then checked two weather websites (that was life-threatening news, a valid excuse - we were experiencing a POLAR VORTEX, and yes, it was 5-layers-of-clothes-FREEZING like I have never felt before), I did read my book for a while and I did not put my computer on all day, but the real reason for no blog (because I really intended to write it after midnight, as I usually do) was because I fell asleep.  In fact, I think on Tuesday, I was awake for 3 hours total. It wasn't too hard not to put my computer on this week...

And there was a reason, so today's tea bag tag I think is a deliberate reminder:

"Listen and you develop intuition"

I was still pretty sore on Monday after my whatever-happened-at-the-weekend pain, but my shoulder capsule was so tight and giving me extra pain.  My physio did some extra stretching - always carefully and gently and with me in control - and then did some soft tissue work to try and free up the capsule a bit and ease the pain.  Lesson not learned.  The soft tissue kneading was sore, but I knew he really wasn't doing it very hard, and although it hurt a bit more than when at rest, it felt like the kind of sports-massage-sore that hurts a bit at the time and then the next day feels so much better..... so that's what I thought.  It didn't.  Actually, I came home from physio on Monday and I fell asleep from about 6pm-11pm - very unusual, and almost always a reaction to severe pain..... also, not really conducive for a normal night's sleep, so then, as expected, I was awake until about 4am.

I will blame that partly on my 'nap' (how long before it's not really a nap?  Can you have a 5 hour nap?), partly on my pain, and partly on the howling gales of an arctic storm that felt like it could lift the roof right off the house.  Rather than go downstairs in the dark and switch my ice packs, I actually just sat them outside on the windowsill for an hour, then brought them back in frozen again.  I think I found the one benefit of the cold weather.  It's nearly over though, tomorrow it has to "warm up pleasantly" - according to the weatherman - to a balmy 33 degrees fahrenheit.  That's 1 degree celcius - 1 degree above freezing. And, yes, it really is "warming up" - that will make it about 20 degrees warmer than it was on Monday, and with no winds - the wind chill made it feel about 10 degrees colder.  Anyway, I did lie awake and listen to the storm for a while, but I did go back to sleep.  I woke up at some point around midday and I always know the pain is bad when it drags me into consciousness; when I am aware of it before I am really aware of no longer being asleep.  Given the weather, I just took my tablets and went back to sleep.  I think I woke up again about 3pm.  Dragged myself out of bed - so sore I was limping on my bad side.... nothing like an injury to remind you how everything's connected.

I had some food, read my book, reminded myself of how much I love Jasper Fforde - and since I'm talking about words, I think I will need to pick a few of my favourite lines from this book and give them their own blogpost, the author's play on words is so clever and entertaining - but by 6pm I was asleep again (NOT a reflection on the book! I love the book!).  Woke up for long enough to get ice packs and make some tea and I was asleep AGAIN before midnight.  Which doesn't make for very exciting reading or writing.... 

So I think the lesson I did NOT learn earlier this week has to be repeated - LISTEN!! My body is screaming at me again.

Especially when a part of it feels like this:  

........................I actually wish my battery was charged that much!  

So the take-home lesson of the week is:

I think that's true!

Butterfly dreams

This wasn't even planned.... today I put a tea bag into my favourite mug and it was like insta-blog:

I actually feel I could leave it at that - one picture worth a thousand words, but most people who know me will know I am more of a 'why use one word when ten will do' kind of person.

I first learned of the quote on the mug a few years ago, after my diagnosis of Lyme disease -  actually almost 6 years ago now.  Not long after that, my Dad's job took us from Florida to Pennsylvania where everyone knows what Lyme is, I found the best doctor in the world (I stand by that claim - in all possible ways)  and began my treatment.  The idea of a caterpillar thinking its life is over and then becoming a butterfly fit perfectly.  Perhaps things didn't exactly follow the expected path from there, but it's still an optimistic quote worth holding onto - something beautiful can come out of even the lowest points in life - but we have to work for them (just like the caterpillar builds its cocoon!).

Having dream on my teabag today seemed perfectly fitting.  It goes with the aspirations of finally becoming a butterfly (just to draw out the metaphor as much as I possibly can), but it reminds me that it's the most important thing to do.  Dreams, hope - it's what keeps people going.

I've had several doctors and therapists tell me that my shoulder will never be normal again. (Some more bluntly than others.)  I appreciate their honesty - they genuinely don't know, because they've never dealt with this combination before, so I would much rather they are honest than pretend they know all the answers.  (The ones who did that caused me far more harm, way back in the early stages.) Nobody knows how much use I'll get back in my right shoulder/arm/hand; or how much (or if) my pain will improve and how long that could take.  They have different guesses, but the conversations usually go something like this:

Dr: I'm sure if you get back 70% function you can live a normal life and you'll be happy with that
Me: But if I can work hard and get to 70%, surely I can just work hard for longer and get something better....?
Dr: Well.........
Me: *staring expectantly*
Dr: Sometimes it happens...... *trails off*

(Just for some perspective: my last evaluation, I was at 20% function - it took me 12 months to go from 15% to 20%.  I should have that evaluation done again this month. I think I've improved, but the last couple of times I've answered the questions, I feel better for the first 4 questions - yes, I can now turn on a tap 'with difficulty' and put on sunglasses 'with difficulty' instead of not at all... YES!!, I think, finally I'm not just circling 'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'......... then it moves on 'can you sleep on your affected side?'; 'can you reach up to the middle of your back/ undo your bra with your affected arm?'; 'can you reach a shelf at shoulder height with a straight arm?'; ' can you put a gallon of milk on a shelf at shoulder height with a straight arm?'; 'can you play tennis?' etc. etc. and it's back to  'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'............ I have to have improved a LITTLE....)

I learned in November 2012, after it took me 9 months to re-learn how to shrug my shoulder that I had done something none of my doctors knew whether to expect or not.  They didn't know if the neuromuscular connections were going to re-form after such a long period of detachment, and all the atrophy that goes with that.  But I worked damn hard on those shoulder shrugs, and as far as I am concerned, I can work damn hard on everything else too.... when I'm allowed...

I don't have unrealistic expectations (well..... maybe saying I know they're (slightly) unrealistic would be more accurate.... I do have expectations, I know they might not happen); I know if I do achieve certain things, it will be against the odds, and it will take a lot of hard work - and it won't happen any time soon.   I know that I can't even do the hard work until the nerves heal, which is estimated at 2(ish) years.  But it doesn't mean I will stop dreaming and stop trying and stop hoping as I do the tiny exercises I can do just now - which I think I am getting better at....

Definitely improving on my first attempts.... several weeks ago, my Scottish physio tried to get me to do a new exercise.  He demonstrated - stood in front of my, barely hunched over and swung his arms in a rhythm, into the middle, out to the side, crossing them in the middle, across the body. Ok, easy.  He went behind me to watch my scapular movement as I did the exercise.  I tried reeeeeeeeeeeeeeeeeeeeeeeaaaallllllllllyyyy hard to make my right arm swing.  Nothing. (This still surprises me.)  He walked in front of me again, showed me the exercise again. Ok, yup, I know.  Walked around me again to watch my scapulae. Go.  I tried.  Nothing.  The left one was just swinging kind of oddly, as my brain attempted to make the right one mimic it, but I obviously hadn't tried that since my surgery. 'New' movement: doesn't work. My brain couldn't make my arm do the movement - this is the weirdest feeling ever, I really struggle to describe it.  My physio, a powerful motivator and someone who will work you with an appropriate mix of compassion + professional coach (/ slave driver in my athletic past - he is way too nice to me these days!) stood in front of me again.  "What exactly is the problem here?" he asked.  I showed him my pitiful attempt to swing my arm (which incidentally was also pretty sore and kind of felt like my hanging, disconnected arm might just drop to the ground out of its socket if my skin wasn't there... although my pride was hurting more I think).  I don't think he knew whether to laugh or feel sorry for me. (He chuckled, halfheartedly - I think if there's such a thing as a sympathetic chuckle, that's what I got.)

He stood in front of me told me to stand up straight and mirror him.  Eventually, my arm got a bit of rhythm - albeit a little awkward.   Now hunch slightly, is that more painful? Yes, but I'm ok (as the room filled with white sparkles - I can ignore them, it's the black sparkles that mean STOP... generally physios and doctors disagree, but it works for me - I have to move SOMETHING).  Again, he stood in front of me and I watched him as I swung my arms, still awkwardly, but at least moving this time.  He went behind me and looked at my scapula. "Useless," he said, "it's not moving."

Awesome.

And back to the quote, with a final 'new' exercise, also a few weeks ago. Standing very close to, and facing the door with my palms against the door at a comfortable height (around level with my chest), shoulder width apart, he told me to move up and down in tiny movements - a couple of centimetres, no more.  He stood behind me, watching my scapulae. Try it with wider arms. Same.  Smaller movements. Arms back closer together. Wider again. Tiny movements. Make them smaller.  Arms together.  Arms wider.... "What exactly are you thinking about right now?" he asked me. "I'm imagining I'm a butterfly, my left scapula is a wing and my right one's trying to do the same thing," I spat out, frustrated and exasperated. "Good," he said, "keep thinking like that."

Listen to the whispers

Double posting...... since I write better at night (or rather in the middle of the night), I'm attempting to make my dates match up!

Tonight my teabag said:

http://www.yogiproducts.com

When I did  some searching using the words, I found this:

I loved The Land Before Time film when I was wee, although I remember it as a sad story - but this is a perfect sentiment, to me these both really mean to listen to your body - your heart, soul, gut.... whatever you want to call it, it means don't let your head and your thoughts dominate if your body is telling you otherwise.

Over the last few months, my shoulder has been treated by a different physio - my physio at home in Scotland, who treated me for just about every injury I ever had when I did gymnastics, and who my Dad claims is the best physio he ever had, as a professional sportsman.  He's an excellent physiotherapist, another person I feel lucky to have treating me (I'm not sure he feels the same...!).  I'm not going into all the details today, but we've been doing things a bit differently.

(He did spend the first few weeks telling me I had "blown his brains"; that he "couldn't even visualise a fully detached trapezius" - he can usually visualise EVERYTHING - it's like he peels back your skin with his eyes and can see how all the muscles and tissue fit together and work together under the skin - an amazing talent; he also told me that "any therapist who sees you coming should run fast in the opposite direction"..... and some more, I think those were the highlights!)

It was interesting for me to re-live all the discovery through someone else's eyes again.  My physio in Glasgow is probably very close in age with my surgeon Dr Kibler; as a sports physio he treats unusual injuries, but Dr K says this injury is "not in the medical encyclopedia" - and taps his head as he says it.  Basically it's still so 'new' that most  medical professionals - even the very best shoulder doctors and therapists - haven't treated it yet, or even learned it is a possible diagnosis - they get the muscle injury, can observe the shoulder not working, the scapula not moving, but they can't fix it.

Now that we've reached a stage where I think his brain no longer feels blown (as much anyway....) and he has carefully and thoroughly assessed me, we have a pattern - but it is much less passive movement and manipulation than I had been getting before; my exercises have been cut down - AGAIN!! - although this is actually in a good way.  He thinks that even making my shoulder work (or be worked) for fives minutes can be too long for it some days.  I am supposed to do my exercises frequently, but for only two minutes at a time - two minutes every hour, ideally.  Two minutes isn't very long.... but I'm pretty good with the principle.

But back to the quote... this physio is someone who has known me all my life; knows my determination, my desire to get my shoulder function back to as 'normal' as can be possible and what he frequently says to me is that I know what to do - I have the knowledge, the years of experience of training my body and I have to let that tell me what to do.  Dr F (with the nerve scans) said the same thing - that I have the tools to work on this myself, I just have to figure out what works best for me. They're basically all saying listen to your body.

And it does whisper.  It's hard to know what is taking it too easy (not much to be honest, but the whole 'no pain, no gain' thing is so ingrained - why can I not learn it doesn't apply here!?) versus what is doing a sensible amount - that 'line' everyone's been talking about for nearly 2 years now still remains elusive.  However, trying hard to listen to my heart, or my gut, or my body - whatever interpretation - and not to my head - has always produced the best results.

Is it working? Is my progress good?  Well, when I saw Angelo when I arrived back here for Xmas, he said "with any other patient, I'd be really worried about what we are missing when this is four months of progress, but with you it's great that you've taken another baby step - at least you're not going backwards"

I'm taking that as a positive! And listening to your body always seems to make the most sense and produces the best results.  So that is my plan for 2014.... and beyond.  I'm running a marathon here, not a sprint; my expectations shift frequently, just like my pain and perception of how well/ badly I am healing -  but if I have learned anything, it really is to have faith in your own body.  Listen to it whisper.

http://www.pinterest.com/gmun22

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

Progress, inspiration, motivation, and smiles

This week has been full of ups and downs.  In amongst those ups and downs, I have made some pretty remarkable steps forward with my shoulder.  I have waited a week to write about it, because, honestly, I've made steps before and within a couple of days they disappear again.  These have stuck for a week, so I'm hoping it is ok to share them now.

Compared to what I used to do, as a gymnast, and compared to how I used to be at my very sickest (virtually house-bound and hardly able to walk), there are many comparisons to be made.  Focusing on the positive differences is great and motivational; focusing on the distance I still have to go always makes me realise what a huge challenge I have still to continue battling - but I do not believe it is insurmountable.  I believe there will still be rollercoaster days (and weeks) and these will continue to test me; but I am beginning to feel like I can win this fight.... even if it takes more time than I ever imagined.

My HUGE achievements this week have been that I manage to do what can only be described as a 'baby girly press up' - a press up on my knees, bending my elbows about 1cm for my press up.  It is still awkward to get into position (involves bouncing about on my left hand before I can place my right hand into position); my weight is not evenly distributed - but I am putting some weight through my right arm/hand -  a major achievement! I can do two sets of 5 'press ups'... dreaming of the days I could do 20 full press-ups with claps in between in about 20 seconds! Oh well... gotta start somewhere.  I can also hold a 'baby girly plank' position, and then I can also do scapular retractions in this position - two sets of 3! - but my physio is especially excited about this as it means my brain has really figured out how to make my 'new' muscles work.  That's a really big deal.

I have also now progressed from the ability to make my arm shake as I try to lift it to actually raising it about an inch off the floor while lying on my stomach. I do five of these.  My physio tells me it is not one set of five, but five sets of one, since I need to rest in between - so the aim is to get it to two twos and then two threes... baby steps, as it has been all along, but the baby steps are working.  Again, this exercise means my 'new' muscles are 'talking' to my brain again, as it isolates them - they are doing ALL the work here.  Another really big deal.

For months, doctors and physios have also been stressing to me how important it is to strengthen my core, and I simply haven't been able to sustain any core strength exercises because of the pain they cause.  I have literally felt my core muscles turning to mush! This week I've managed to do 20 sit ups (well, crunches really.... on a ball) every day - a whole two sets of 10.   Amazingly, this is actually enough for me to begin to feel my muscles toning up again - in fact, there is actually a visible difference in my tummy which was beginning to develop this little wobbly part for the first time in my life..... disaster averted! (Um, yeah, because THAT was my disaster in all this....)

So that's my daily exercise regime now, along with still some basic range-of-motion movements, just to continue with those and continue to teach my brain how the sequence of movements is supposed to work.  I can't believe how exhausted it makes me, and I do still sweat, but the sparkly lights do not appear (as long as I rest in between exercises) and the impending blackness in response to any effort from those muscles seems to have disappeared..... finally!

The pain is still there, and it is still a major factor but I have decided to see if my body is ready to push through it a little and build some strength, which should then support my muscles more, reducing the pain by increasing the strength.  It's the viscous circle I've been caught in all year, and my physio is very much stressing I have to take it VERY slowly (I am not allowed to try any more headstands....pillows, walls, or anything - no exceptions! Physio's orders. To be honest, it hurt a bit too much anyway, but I did elephant-lift my feet off the floor for a couple of seconds..... I'm viewing it as a positive sign ...) and all my (approved!) exercises are with very low reps, small sets and tiny increments.

I've been taking choline and inositol as a supplement for about 6 weeks now - that is supposed to improve nerve healing (kind of, it's complex - all related to acetylcholine production and pain receptors and generally neurobiology that goes a bit beyond my understanding), but I think it could be helping.

I have also now been having Feldenkrais treatments for a few weeks and I have felt a benefit from these too - I am still unable to really explain them (it's a very slow process, I will try to explain at some point, right now the focus is on visualisation to increase body awareness - I'm really not sure how it's doing anything, but my body reacts pretty strongly to it even though I feel like I lie for 30 minutes and concentrate on moving my eyes in different directions with them closed.  It's really rather weird, but I definitely think it is helping somehow).  Feldenkrais is also supposed to promote nerve healing and the sessions make me sleep - unfortunately during the day; this is not good for my nighttime insomnia, but it's still sleep and they say we heal while we sleep...    

I feel most of my pain is more specific now.  It's still pretty severe at times; my attempts to do anything and go anywhere are still battles to manage mt meds, and fight through the pain, ready to collapse in bed (with my ice machine) as soon as I get home; but even with that, all the crazy parasympathetic pain does feel like it has calmed down a bit more, not entirely, but it's taking a positive step in the right direction.  

In the meantime, I am going to continue to watch this video on Youtube several times a day for pure inspiration, motivation and smiles.  Watch and be amazed!  It's simply mindblowingly amazing!!!

And yes, I'm super jealous.... and probably going to become slightly addicted to this superstar, Damien Walter's YouTube page:

Maybe one day.....

“Dwell in possibility."

  ~ Emily Dickinson