Rare disease day... the perfect date!

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

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

'Shoulder stuff'

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

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

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

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

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

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

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

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

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

  

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

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

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

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.

Pain relief arsenal...

So far, I feel this year can be summed up by the fact that this photo is pretty much my current "what would you take to a desert island?" answer.  

v

Pain relief arsenal.
It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...
#accessorize
#thespikythingshurtlikehell
#theyarenotsquishy
#theydofixdislocatedribsthough
#YAY

I had a few violent 'pain attacks' lately and - sticking with my personal resolution to be more honest - I really feel pain is winning right now. So, here are the weapons in my pain arsenal - most of them go everywhere I go right now.  Find your pain, pick your poison. I present....

My Pain Arsenal:

1. Tablet organiser case (guess I'm missing the hot pink version!) with a mini 8-compartment tub in it for sorting daily pain meds (no Lyme meds or supplements - this is just the pain box :-/ ). Right now I have 40-50 tablets I take every day in that - types of painkillers; multiple muscle relaxants & anti-spasmodic meds; a couple of different anti-nauseas (I respond to severe pain with nausea..... sometimes I throw up. And that hurts like hell. So I have some serious anti-emetics in there); plus some 'extra-just-in-case' tablets for when Really Bad Things happen (I'll write a 'Really Bad Things' post... maybe a few... little snapshots of my whole 'honesty and pain' thing.... that will be something happy and cheerful to look forward to...)
   
   
   N.B. *I really should put emojis on my laptop!* Is it really bad I miss them when I type on here?! ( *facepalm*... *ha ha*... ;-) ...)
   
   
         From the photo: going anti-clockwise here...
   
   
2. Radian B, my favourite version of deep heat/ icy-hot/ ralgex/ etc. because it also has the perfect amount of capsaicin in it: 0.01%. More than this will make you forget your pain entirely, because you feel like your body is covered in FIRE; 0.01% is just enough to beat all the other heat rubs out there. It puts heat into the muscles; also helps with pain by slightly scrambling the nerve signals sent to the brain. I really love the smell of muscle rubs.... they smell like my Dad used to smell when he came home from work when I was very young (when he'd see a physio after a game); they also smell like gymnastics - the scent of my childhood: muscle rubs for sports injuries!
   
                                                                                                                        
3. TENS unit: 'transcutaneous electrical nerve stimulation' (sounds like another torture device, right?!) Actually, at certain times, this thing really is like magic. There are some pains that it doesn't do great with - specific nerve pains can feel like they are just buzzing more; but for some otherwise-untouchable pain, the TENS unit works wonders. It sends little electrical impulses between the electrode pads that can be stuck on the skin, carefully positioned to target specific pain areas. It has different settings- buzzing, tapping, contracting, cycling through them (my 'surprise setting') - and can be set at different levels of intensity. Essentially it 'scrambles' the sensations sensory nerves send back to the brain, scrambling the pain signals by confusing' them with other sensations.
   
   
4. Pink spiky physio ball of torture (not a dog toy). Rub painfully between your aching shoulder blade and a wall to improve circulation, blood flow, break up scar tissue, etc. For more 'fun', have someone else (who can actually reach your back better anyway) rub it to 'desensitise' high pain areas and super sensitive skin, and to break up tightness in muscles.  Generally - roll it anywhere it hurts to improve blood flow and use it to torture yourself in the hope i does some good!
   
   
5. Pink spiky foam roller - this was deceptively packaged........ it is not in the slightest bit 'squishy' - I thought the bumps would be good for clicking the subluxating ribs back into my spine - and it is good for that. But bloody hell, a regular foam roller doesn't hurt! However, it's good for the crazy popping ribs, the assisted movement exercises & adds some unplanned desensitisation stuff just by lying on it!  Which, with increasing pain, I have to admit is a good thing - although sort of in the way broccoli is a good thing when you're 8 - you really don't like it, but 1. it's good for you, and 2. dessert's only an option if you eat it!
   
   
   
   

   v

   Pain relief arsenal.
   It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...
   #accessorize
   #thespikythingshurtlikehell
   #theyarenotsquishy
   #theydofixdislocatedribsthough
   #YAY

   
   
   
6. Prescription pain cream - a wonderful combo of topical local anaesthetic, muscle relaxant and anti-spasmodic medication.  Made better by mixing with Radian B (& missing from the photo is a genius find - a very soft-bristled, long-handled back brush that I can use to apply the creams and rub them in thoroughly - if the pain cream is properly rubbed in, it's supposed to penetrate up to 5mm into/ below the skin & be absorbed better.  It's pretty hard to do that, so if you're reading this and use a pain cream, a soft bristled brush may be your favourite new thing for a while!
   
   
7.  ICE pack -  they are all resting on top of a giant ICE pack here, wrapped in the grey pillowcase. A perfect metaphor -  ICE is absolutely the foundation of it all.... still!  Sometimes ICE is absolutely still my favourite thing!  There was a time ICE brought; the only respite from the pain; and I do miss that damn ICE  machine, mainly because it's hard to ICE a shoulder - it's a funny, awkward shape and that shoulder pack hit all the right spots perfectly!  ICE  sometimes really is still the best pain relief, especially when my shoulder is irritated and inflamed and and numbing/ reducing swelling is the BEST thing that works - especially with frequently random irritation and swelling which can be pretty horrid if it presses on nerves (um, or more accurately just goes from its normal gentle press to a full blown, limb-numbing nerve squeeze).
   
   
8. Hot water bottles (not pictured; but I have 3) - I'm probably holding one against my ribs in attempt to keep the muscles relaxed enough to breathe properly (because that's always good!)...... my right rib cage no longer expands properly, making breathing difficult at times. I think it should improve, but stretching right now causes further spasming; my attempts are pretty pathetic - I need the passive stretching from hands-on physiotherapy while my muscles can 'relax'.
   
   
   *I think the tight rib muscles got a lot worse after my car accident.... which I'm not sure I've mentioned on here....?  I guess that's another one to add to my list of 'Update how UNBELIEVABLE my last 18 months have been'. And I mean unbelievable in the sense that I am quite sure if I just sat down and rattled off everything that has happened to me in the past 18 months (/ 26 months / 6 and a half years / twelve years - really, take your pick! ) to someone who does not know me/ has never met me before, they 100% would NOT believe me.

Pinterest even had a perfect graph to represent exactly how every day feels
- and it matches too!
Seriously though, it really does get beyond frustrating.
So many things I wish I could do that just don't happen just now.

Four years ago...

Four years ago on this day...

My first blog post of 2016 (actually my first post for quite a while) has been prompted by Facebook's 'see your memories' gadget that popped up on my feed earlier today.

I'm very aware this weekend marks 4 years since my first surgery. I have been mentally composing a post, ready to return to my neglected blog. It still feels like I need to recognise it - it's still not 'over' so there is still a rawness of sorts attached to the date. But today's caught me a little early, not quite off-guard, but not far from it. 

A lot has happened in the past few months that I haven't blogged about. I'm not even sure I know how to yet, but looking at my Facebook 'memories' today (did I mention I really hate that thing?! It seems programmed to pick the best *sarcasm* days to 'remind' me about....)

So.... 4 years ago today, these are my 'memories' - indelibly marked in my mind, but brought into glaring reality when staring out at me from my phone. Today, this is what I saw:

We were indeed in Lexington, Kentucky 12(ish) hours later, but little did I know what lay ahead... 

Sometimes, I think I am actually so very grateful for that blissful ignorance. There is so much we can cope with when we have to, I think definitely more than we can really imagine. When something big; something life-changing; something massively challenging happens, there are really two options - figure out how to deal with it, or don't. In other words, you beat it, or it beats you. 

That doesn't necessarily mean you can storm your way through life, stomping down every difficulty thrown at you as if you are superwoman; but it does mean you are in control of how you react to that challenge, looking at the bigger picture.  Dealing with it might still involve crying, screaming, yelling, sleeping, not sleeping -  generally struggling to figure things out; and 'figuring things out' doesn't necessarily involve a eureka moment, an epiphany that provides a working solution that you can just go with. Sometimes it means you just keep trying to figure things out, finding little solutions day by day until a big solution comes along.... or doesn't - sometimes day by day is the solution, and that doesn't mean you're losing, I have learned.  It pretty much means you're human.

(Official video courtesy of YouTube; not mine)

Reading back over that blogpost from 2012, it just feels so naive,  so unsuspecting of what was to come. I remember that feeling. It seemed like so long, from the previous June, and such a battle to actually get to that point - it was a battle!  I just had no idea how long the battle would last. I still don't.  But I genuinely was excited about the surgery. I genuinely thought it was going to fix everything. 

Then last year (apparently) I posted this, another link to this blog:

And it is still true. In a bittersweet way (the beauty of the words being the sweet part), this 'memory' is the one that stood out most. Not really to share on Facebook (hey, what an awesome time I was having a year ago.... because, really, that's supposed to be the point, isn't it? Facebook.... otherwise known as 'my perfect life'... surely we're all over that now?! We know better - right?!).  

Just the words.... they captured so perfectly how I felt, beaten and battered by things entirely outwith my control. Little did I know one year on, that list would have lengthened and I would still feel these words, as if they are living deep within me, flowing through me, as control remains nothing but an illusion; entirely out of my reach.

So, yeah, that all kind of hit me hard today. I was mentally preparing for the weekend - it's silly in a way, it was an arbitrary date, it really just marks another day passing, but at the same time, it does hold significance. I can think about that then.... 

But today, four years ago, we made our FIRST trip to Lexington, full of hope and optimism; and I guess, I need to search for that hope and optimism, and hope that somewhere deep inside, it hides, still there, ready to surface again. And I also need to remember I'm only human - and there are many ways to deal with challenges, and they're all ok, there are no magic solutions. 

 Hope is the thing with feathers 
That perches in the soul
And sings the tune without the words
And never stops at all
~ Emily Dickinson ~

Stitches, funky bandages, fainting and more...........

(I started writing at the beginning of the week; bits & pieces added throughout this week - remaining update to follow...)

I am opting mainly for a picture-story update today.

A week ago, I went back to the surgeon to get the remaining stitches out.  This is how they looked prior to the appointment.  I still hadn't seen what was under the paper stitches on my wrist:


I still had stitches between the thumb & index finger; the centre-bottom of the palm, and  the one along my wrist:  

And still loads of ink, making it hard to see!

Since the last visit, I had added a bit of style and colour to my incredibly fashionable splint - who knew they made designer plasters?!

Too fun not to share! Well, if I had to wear a bandage...
.... and colour therapy, right?!

And back to the clinic.........

The one on my wrist under all the 'sticky stuff' (going with that 'technical term', since I got a partial arm wax as it was removed) was pretty cool - the stitches were under the skin, hidden.  There were just two long 'threads' at each end, one was cut then the other pulled everything under the surface out with it (you can just see one in the photo, I had the 'oh can I take a photo?' thought almost too late).

This was pretty cool - the stitches were inside and each end had a 
thread sticking out like the one on the right - she just cut one 
end (then I took the photo) and pulled out the remaining 'tail'  

It looks fine, but considering it was stitched from the inside - and my comparison
is how amazingly fast and neatly the scapula incision (with 18 STAPLES) healed -
 it doesn't look quite as neat as I thought it would - yet.  Lots of aloe vera.

The physician's assistant asked me if I'd had any more "dizzy spells".  "Nope - it's never happened before and it hasn't happened since." .......... until 5 minutes later when she took the stitches out of the incision on my hand and the room  began to swim, I was suddenly drenched in sweat and throwing of layers of clothes around. Well, as much as I am able to 'throw'.  Or undress.  Mostly a scarf and cardigan awkwardly hit the floor.  At least I didn't.  

I DON'T KNOW WHY!!!

BUT I DON'T LIKE IT!!!

Stitches out:

If you zoom in, there's still some in there, apparently
they "grow out". Not especially fond of that info.

The one between my thumb and index finger had been seeping (bleeding really) even while stitched.  My physio told me to clean it with soap and water and keep it covered.  The one on my hand also bled - it wasn't totally joined and pulling the stitches out hurt more than any other time I've had stitches removed. Actually, on all previous occasions (4 or 5) I've never felt more than a slight pull.  Maybe that's why my head started swimming........?  Also not something I've experienced before and I'm definitely not a fan of that.  I've had the 'blackness' that I've written about before, usually from pushing through severe pain, but that's an entirely different sensation.  It still wasn't the sorest part of my body though - unfortunately 95% of the time, my right scapular area still wins there.

HOWEVER..... Unfortunately, this week, my left hand, my 'incidental' little injury, my 'minor' surgical procedure; my 'nothing to worry about - let's just get it over with' little old silly 'wrist sprain' with the simple, happens-all-the-time surgery has been making itself felt emphatically.

The day after the stitches were removed, my hand swelled, with hard lumps; felt like it was on fire; the incision sites became more painful; and I found it more difficult to move (as in while pressing hard and painfully with the other hand 'difficult to move' because of hard bumps; not a pathetic 'oh it's a little bit sore I can't do that exercise' hard to move. Just to be clear!) 

Top: swelling & discoloured hand  (not quite so clear here)

Bottom: All natural, late-night homemade antimicrobial concoction on dressing:
allicin, colloidal silver, tea tree oil and samento

Which worked really well!  The next day, it looked and felt so much better:

Really!
Swelling was reduced, not as hard, the redness was gone & the incision at my thumb
looked like it was properly healing after a few days with paper stitches

Panic over; disaster averted!  Or so I thought...........But that's pretty much where I ended this blog, and typing takes ages right now -  and sleep is much needed (although not forthcoming!) so until the next one........

t minus 13: Inspiration Required

Looking ahead towards my physio session tomorrow, all I can think about is how hard this is.  Not the exercises, the passive movements, the assisted movements; not the pain, the frustration that I can't make my body do more; not even suppressing the constant urge I have to throw things at any other patient (especially new ones!) doing 'advanced' shoulder exercises that I have been working towards for 3 bloody years! 

The hard bit is trying so f*****g hard and not making any significant progress; of feeling like things had been going "relatively ok" - as in during week one the room did not spin or go black; nobody had to come running towards me with a chair, a cup of water, or to catch me before I fell; and importantly, my physio did not make his 'what the hell is going on with your body?' face - that is definitely what would be termed 'relative progress'.  With those baselines, it really shouldn't be that difficult to make some 'relative improvements'.  So, I guess for a whole week, I did. 

I think it's fair to say this philosophy seemed to be working last week

Until Monday.  When I found my knees curling themselves into my chest and my left hand trying to 'soothe' my right shoulder by just touching it, unable to leave it alone; when I tried to 'hold up' my arm and it just flopped, as if lifeless, back into my physio's hand; when I had to give up on a couple of exercises for that reason; when I could trace the exact location of the long thoracic nerve the entire way down my physio's back to show him exactly where my pain was; when doing one exercise made it feel like that nerve was filling with icy cold water; when I had to keep checking the walls to make sure the sparkling wasn't turning into big black dots (only a couple); when I told the new intern that if I looked like I was just staring into space and not doing anything, it would probably be necessary to get a chair close to me asap, "Why?" he asked. "So I don't hit the floor." and explained my weird 'syncope without loss of consciousness' ('fainting without fainting'); when I realised mascara had been a ridiculously optimistic idea - sleepy half-shut eyes would have been better.  Oh, and when the 'what the hell is going on with your body?' face appeared far too often.

I guess 'relative improvement' is that I didn't need that chair, and the black dots didn't last long.  However, 'significant improvement' it is most definitely not. 

Because, like it or not body, brain says you are going back!

As I think about my next physio session - honestly wondering what surprises my body is going to throw at me next, I also wonder sometimes: how long can I do this for? 

But I remind myself of this quote, because it is the truest one I know:

Nobody can argue with that

At different times, my physios and doctors have acknowledged this difficulty - which quite honestly I think stops me from totally losing it, or feeling crazy.  When someone you are trusting with your health, and therefore your life, acknowledges how you feel - even shares in those feelings with you, it is one of the greatest comforts I think any health care professional can offer.

SURGEON

"Once something goes on this long, it becomes a mental challenge as much as a physical one.... for all of us." 

Said my surgeon, to both my physios, my mum and me - 8 months after my first surgery.  So that would be just over 26 months ago now.

Reckon the words "indomitable will" might sound good on a CV.  Proof? I have this blog...

PHYSIO

"Why have you not gone crazy yet?"

My specialist physio asked....... or rather half asked, I just filled in "crazy" as he struggled to search for a more appropriate word - around 18 months ago.

I sent him this.  He liked it.

DOCTOR

After another attempt to 'push through' failed and various discussions followed, I grumbled to my Doctor, 

"If I wasn't going to try hard, I think I would have thrown myself off a roof a long time ago."

"Probably something much higher."

He replied, as if we were having a perfectly normal conversation - sometimes it feels like his sense of humour keeps me sane. That would be about 20 months ago.

Because my awesome doctor is as crazy as I am, apparently

I think back over everything I've tried - I've had some little successes, like the incredibly significant shoulder shrug that held so much optimism and brought so much excitement to everyone - myself included, but that was 26 months ago too.   I really feel like I'm still waiting on the next 'shoulder shrug' - the next significant thing that lights the way with optimism again; that whispers quietly to me, "this is working".  And even more importantly, I believe it.

Inspiration is always good; actually sometimes, it's essential:

Not planning on it.......

"Success  and  failure.  We  think  of them  as  opposites,  but  they're  really not.  They're  companions - the  hero and  the  sidekick."

~ Laurence  Shames  ~