November Mindfulness: Comfortable

November Mindfulness: Day 3 'Comfortable'

I think this really speaks for itself, but for a brief explanation of the most comfortable 'bed nest' in the world:

Back/periscapular muscles spasm causing horrible, lasting pain (talking over a week of heightened pain here) & a very unhappy body...

Nurse: Don't sleep on that arm [with the PICC line in it]

Physio: Don't sleep on that shoulder if it's compressing nerves

Body: .............. OUCH! Can't sleep.... 😱!!!!

Insomnia driven brain = best creative ideas EVER.

😴

Comfortable
#bednest #pillowfort #icepacks

I literally put the cushion back on the chair 3 days in a row and ended up hauling it back to my bed in the middle of the night again.  It's been back on the chair for several days now and my bed no longer looks like a nest.  Every night since, I have stared at it and wondered if I'd be sleeping already if it was back on my bed....

"Insomnia is my greatest inspiration."

~ Jon Stewart ~

Rest, don't quit

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

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

www.pinterest.com/gmun22

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

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

www.pinterest.com/gmun22

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

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

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

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

- Michelangelo -

*Geek Moment:

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

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

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

A bit more serious...

Thinking more about chronic pain, because....... well, one, I opened that door and it's definitely something that deserves some attention and awareness; and two, because I HAVE IT!! Along with hundreds of thousands of people; around the world, probably millions of people.  Ususally I would actually go to Google and then cross reference a few searches to see if I can get a rough percentage, but I'll just stick with the 'I've read in multiple places it's a problem for millions of people' (You can fact check me if you wish!)

Drawing attention to chronic pain is an important issue.  Many people are living with some form of chronic pain, and will do so for the rest of their lives.  For some, pain is constant, for others it comes and goes.  If my treatment goes to plan, mine should improve massively, as the function of my shoulder improves, but it is unlikely I will ever be pain free.  However, if my pain drops below a level where I have to take crazy concoctions of strong medications and I get myself back where I can live a normal life, I will take that as a win.

I think it's important to draw attention to this quote, from a seminar/ conference (/can't quite remember which) on pain, last year, this was said:

I really think that last sentence is worth highlighting:

"We believe chronic pain is a disease in its own right."

I admit that I had absolutely no idea of the extent to which pain can affect the entire body. And it does - pain makes you tired, you ache, you struggle to concentrate on conversaation  as if you have a bad headache (you get them too); your body tries to compensate for the way you move, so other non-injured parts beging to hurt; you have to try to learn to correct that so you don't create further problems; the pain makes you tired, but you're too sore to get comfortable - sleep is broken (shoulder pain is actually one of the most common causes of insomnia) Or it swings entirely the opposite way, I hit a 14 on the scale below, and when I do le down to rest, my body just seems to wipe out.  It's such a strange thing to explain  -  I understand why it's so difficult to understand; but if you have a friend or family member with chronic pain, sometimes reading some of those usually really simple 'about......' articles make useful points.  And, as usual, I'm writing this to try to draw attention to another 'invisible illness' and maybe offer a glimpse into the complex world that is chronic pain ..... 

It is definitely not 'broken wrist, stick it in a cast' kind of pain; this is like saying Lyme disease makes you 'tired' as opposed to 'pathophysiologically fatigued' (the medical term; aalso used wwith ME/CFS/ Fibo and other similar illnesses -  not something a normal sleep helps in any way). Chronic pain and acute pain are not just different sides of a coin, they are completely different currencies.

 And really, as an, um, adventurous kid, I thought I knew it all - acute injuries: broken bones, pulled muscles, head/ neck injuries (gymnastics, flying over bike handles, falling out of trees.... and more - I was active!!); along with 'normal' pain from general minor illness.

 But that's the key word there  'A C U T E'  - chronic pain just isn't comparable.  It's not like having a sore arm/ shoulder/ tooth/ whatever.  It's not something you can compartmentalise.  After you have pain for a certain amount of time (medical definitions vary from 3 to 6 months), it changes the way the brain processes pain.  Sort of.  Because we don't really know that much more about pain.  Generally, the body should heal in that time  -  in my case, for example, I know my muscles were still detached 8 months later (right before they were reattached).  So then I had surgical pain (& the damage that goes with that)..... in an area that had been in severe (undiagnosed and untreated) pain for months.  Knowing what I know now about the actual physical damage as well as what I know about the little we really understand about chronic pain, it is not surprising that I have pain issues - add in my nerve damage, lack of function in my right shoulder; and other things that all came to light (I think it's pretty much covered across 2012- early 2015 on here!) -  my sister's cat could issue a chronic pain diagnosis if it could talk.

A solution on the other hand.....?...... Well, if we don't really understand how chronic pain works, it's pretty obvious to say we don't have a good solution for it. Slap on a fake smile, lipstick, and a pair of sunglasses (or a good mascara) with my meds, and nobody would know...... most of the time...... Bad days are harder to hide, but those also tend to be the days I just hide under my duvet, with little other choice..... this is far more than I ever really admit.

Recent happenings (details for another time, but not so good) have led doctors to offer me further medications and then more medications to mediate the side effects of that extra pain medication.  Right now, I have a drug combo that works the best out of anything I've tried.  It doesn't take the pain away  -  and nothing will.  It lets me cope with it, basically.  But I'm never not in pain.

This leads to a lot of judgment.....often from doctors who make comments like "you really don't want to be taking this many medications at your age....' (umm..... NO, I really don't.....) but after examination, history, and discussion conclude that they could "add more pain medication and give you another drug to help with side effects." So I declined.  The extra drugs won't get rid of my pain, so I'd really rather not add more toxins to my body - only to have the next doctor judge me for the even greater number of meds I take. *sigh*

One thing that gets me with this is the assumption you're 'out of it' with medication.  Most people's experience is after a surgery or following a bad injury - nothing long term; and for most people strong painkillers will make them either loopy or sleepy.  There's about 5% of people who have 'contrary reactions' to meds - guess what group I fall under?!...... Of course.  I have known this since I was 12 though (e.g. valium makes my insomnia worse, instead of knocking me out.  I would much prefer the sleep).  However what is difficult to understand for people is that my pain can make me seem 'out of it' - it has nothing to do with the meds. 

My sister once told me she "could tell when [ I ] had taken all my medication because I as a bit slow to think..."  Actually, she could tell when my pain was bad, because I take the same medication every day, at the same dose in order to try to keep my pain 'even' (rather than it spiking and dropping like a rollercoaster) - it sort of works.  Research has shown that in patients with chronic pain, pain medications act differently in the brain than in people using the drugs recreationally/ to 'get high'.  I know it's a misconception that bothers other people too. 

When people (and usually medical people) comment negatively on my meds, I think about what those meds enable me to do....  It's nothing like what I would like to be doing, but they enable me to get through my physiotherapy sessions.  They enable me to get out the house, have a shower  - basically to not lie crying in agony 24/7 until the pain just knocks me out.  That's where I was before the pain meds ere sort of balanced.  I imagine, sometimes, answering with, "would you ever make a cancer patient feel guilty about chemotherapy, a class of drugs that are known poisons, but the best you can offer?" - Because of course they wouldn't!!  Nobody would!  And the same should apply to all other patients too - those 'evil drugs' are the only things those same doctors can offer; it's all we've got.

 (As an aside  I think I actually HAVE also tried EVERY ''alterative therapy' I can find, and I do take a few supplements in order to actually avoid certain drugs, for specific things.  Laughably, the doctor who has just told me I shouldn't be taking so many prescriptions drugs, but offers me no alternative, then usually tells me the supplements are probably not doing anything.....)

*Arrrrrrrgh!! * Can you hear me scream?!

 So, yes, a little bit more serioius - but if you made it through that, and you know someone who suffers fom chronic pain, maybe you can ask them a little about it; or give them a (gentle!) hug - most people just want to be understood. :-)

Words have no power to impress the mind ithout the exquisite horror of their reality.

- Edgar Allen Poe - 

Strength

To quote my surgeon, who could not have been more right: 

"when it goes on this long, it becomes as much a mental challenge as a physical one."

...... and that was over three years ago. I hope that finish line comes into sight soon.

pinterest.com/gmun22

"The mind is everything. 
What you think you become."
~ Buddha ~

t minus zero (if I were still counting)

I haven't been to sleep yet, but it's after midnight so it is officially 't minus 0 days' (if I'd kept counting).  Today I have my follow-up with both my surgeon, Dr G, and my specialist shoulder physio, M.  A quick glance back shows I haven't written for over a week (11 days to be exact) and I guess that I stopped counting at that point.  Things got complicated again and trying to sum them up in a picture seemed impossible.
 

With a week+ between then and now, I can discuss things more clearly now.  I felt like I was completely failing, and I did not want to give up. That weekend, I slept almost constantly.  I managed to wake up to eat, do my exercises,  chat with a friend on skype ……...and that was about it.  My entire weekend. I didn't even manage to leave my bedroom.  I didn't intend to keep falling back asleep, I wasn't having a 'lazy weekend' on purpose, I just couldn't stay awake.  A decade of insomnia seemed to have turned to narcolepsy.  It felt like my body was saying, "I've had enough. ZONK."  My pain was off the charts again, pushing myself through my exercises was feeling more and more like stubborn determination and not necessarily logical thought.

Eventually on the Monday I asked my physio the question I felt had been looming over me for a while, but had started to smother me that weekend: How do I know when I'm working through the pain to my benefit and when am I just pushing so hard I'm causing more damage?

 

There was no doubt in my mind that things did not feel good.  But I did not want to 'wimp out'; to give up because it hurt - if someone could tell me that yes, it was going to be this disabling, but it would produce results, I would continue to push through; but they couldn't.  My physio asked various questions - summary of answers:

• Literally all I am doing is PT three times a week.  I haven't been anywhere, done anything at all since we started on this 'push'.
• I'm not eating properly - either asleep to too sore 
• My pain is so bad that it feels like my body can't cope with it in any way - it just shuts down and goes to sleep: 
• in the car on the way home, 
• on the sofa, 
• (almost) at the dinner table, 
• always when I go for what previously had been a rest/ lie down after physio on my bed 
• sometimes I'd even fallen asleep while eating & resting.  
• None of that was anywhere close to 'normal' even in my already messed up version of 'normal'.

 
It was made pretty clear that was not the goal here.  Yes, I have to do the exercises, I have to work on my range of motion (ROM) and maintain it at a decent level so there is no risk I will end up with my humerus stuck to my scapula again; but if working the muscles in the strained positions were causing such a resurgence in some crazy nerve symptoms, and producing that level of pain, we can work on maintaining the range of motion passively at the moment, and work on getting the muscles to fire at an even simpler level.  It turns out the 'simple' level we were working at is still too many steps ahead of what my body is capable of.  It's a bit like going back to the shoulder shrug  - I haven't been able to use certain muscles properly for a long period of time, so I have to start at the beginning; I have to go back to rebuilding neuromuscular connections and 'teach' my brain how the muscles work again.  There are still too many blurry lines between what is nerve-related and what is 'mechanical' or 'musculoskeletal'.  

It still feels like peeling back layers of an onion sometimes - as we talked, I remembered that this surgery was never supposed to 'fix' everything - it was to see if my ongoing problems were purely nerve issues (which it proved they were not) and to address any 'mechanical' issue the surgeon could address, while also 'clearing out' my shoulder capsule.  All the talk of 'pushing through' and 'making this work', and the fact that he had actually 'fixed' something had whisked me along, thinking I had to make my arm work from this.  A reminder that was never the plan was strangely comforting - I was trying so many things and felt like I was failing at them; but that was all part of the process.  Nobody knows what comes next for me - it is simply about trying to do my best with the way things are right now, in the hope that one thing will lead to another positive step.

I was nervous about even asking.  Not that anyone here has really given me reason to be nervous, but so much emphasis had been placed on achieving certain markers this month and I didn't want to look like I was giving up.  I don't give up on things. I thought long and hard about deciding I needed to change things before the month was up.  My PT agreed with me - he told me he sees the pain on my face when I do the exercises, he doesn't think I'm a wimp....! As it is, I don't feel like I've given up; I feel like I made a sensible decision - after the first day of changing the PT session, I managed to go with my mum for coffee afterwards & a wander round the mall - I did not fall asleep in the car when we left the clinic!  The following day, I woke up; as if my eyes had opened properly and a fog surrounding me had lifted.  I knew I had made the right decision - not the decision to give up; but the decision to change the programme again in a way that I will see more improvement and be working with my body, not constantly fighting against it. 

This seems to be a lesson stuck on repeat.  I appreciate my physios and doctors really don't know what to do about me and are trying their hardest to get me to a better place and I appreciate that so much.  At home I was told it was unlikely to get any better; well it HAS!!  Even now.  Especially considering my arm (head of humerus) is no longer stuck to my shoulder blade (glenoid)!   But I do feel that I am stuck on a merry-go-round where we 'calm things down' then we 'push through' then that fails miserably, so we 'calm things down' and I listen to my body again; then I see stuck; so we try a new thing to 'push through' - it IS trial and error, I get that, and I would much rather it was trial and error than being dismissed and told there is nothing wrong.  The difficulty is how much is causes me to question my body.  Why is this not working?  Is it me?  Am I being a complete wimp?  Should I be pushing this more?  And the most frustrating: why can't I get my body to do this?  Why can't I make it? - the answers to these from various sources seem to be - thankfully! - in my favour: no, you're not a wimp; yes, I can see you are trying; I can see the pain on your face as you try to push through; you are a 'compliant patient'.  

Gotta keep trying!

Even my dad did an impression of me; he'd come to pick me up from PT one day while we were measuring my ROM - [screwed up face, funny voice…] "Get it further, get it further, push it to 160, will it go?" with his arm 'up' in the air (yeah, mine probably looked like that).  Strangely, that impression made me feel a bit better.  My dad's not known for being the most observant person in the world(!) so for him to actually imitate my screwed up 'pain face'; 'pain voice' and determined moment meant that's what it actually looked like.  And in that one moment, of getting my physio to force my arm as far (beyond) where I could tolerate it, I reached the magic number: 160 degrees.  It might hurt like hell, but I have made some progress:

This is still passive movement mainly, as my left arm is doing all the work, 'rolling' the right arm into position - however it does show that my ROM has increased; although you can see the obvious asymmetry in the muscles & movements from some of the views. 

(And ugh, my flexibility has GONE!!)

(Yes, unfortunately, these HURT - but I have IMPROVED!)

Back to the 160 degrees forward extension - can I do it myself?  Hell no.  Nowhere close.  My muscles simply are not 'there' enough again.  We are starting way further back with them than we thought.  I can't tell if I'm moving the right muscles again - but I've been there before and I know that I made progress, so it's not quite as scary this time.  It's just trying to figure out how to 'teach' the brain it can use those muscles again and right now I am barely on the bottom rung of the ladder with that.  My best attempt at explaining it is to say to someone (who is not a gymnast): if I said to you "do a somersault", you know you can't.  You might have seen them a million times on TV or in real life; but you can't simply stand up and do a somersault.  That's about as close as I can get to explaining - I know I have these muscles, and I know what it looks like to raise my arm above my head, but I know what I can and can't do with them - just as you know you can't (or can) do a somersault. I know what I haven't got the foundation for yet; what I need to work on; which links in well with gymnastics analogies of training to do a somersault - even if you're a gymnast, you didn't just somersault one day.  You worked through progressions - that can take years - to get there.  Gymnastic analogies work really well with the regeneration of neuromuscular pathways (in my head anyway....!) because progression is always required.

Go for it! -

https://www.pinterest.com/pin/566820303073377346/
STANDING DOUBLE-BACK
(If you're not a gymnast - this is not 'normal', this is superhuman gymnastics!)

While it seems silly to compare something as simple as putting my hand on my head with a somersault; each thing requires multiple muscles to move in sequence to achieve the physical goal.   I will get there.
 

So as far as reaching my 'goals' for today's appointments - I have, really, even though I wish it felt like more progress; but the big issue was so the surgery was not 'wasted'  -  no re-sticking my arm to scapula, so that's a pretty good thing!  My arm can be pushed to 160 degrees - yes, it is sore, but the fact it goes there without feeling as if it is pulling my scapula through my skin is the major point - it has not 're-scarred' and so for now, passive work will maintain that motion.  I wish I could do it myself, but it still proves the surgery was worthwhile and I have NOT let things slide backwards.

Moving forward there are still lots of things to think about; lots to figure out; and lots to keep working on.  And yet another lesson this month, one that I have 'learned' many times already, but one that is always good to remember:

 

 It can be difficult to keep this in mind when so many different exercise programmes are thrown at you.  It is easy to doubt yourself, to try to squash that voice inside your head that is screaming at you to stop.  There comes a time where you really have to listen to her and not force yourself through agonising exercises without seeing results - especially when other exercises are showing results.  Knowing where that elusive line is has never been easy - in fact I still don't know where it is!  But I have been reminded that my body is pretty in tune with itself and I have to respect that - because I can respect that while still working out ways to keep improving.

 

I'm just keeping my fingers crossed that I can walk away from both appointments later today feeling like my hard work has been worthwhile; that I can take something positive away from each appointment.
 

“Anyone who has never made a mistake has never tried anything new.”

~ Albert Einstein ~

 

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  ~

The weekend

Let's see.............Not much to say -  at the weekend, I was so exhausted, I just took this advice:

Did it do me any good? I really don't think so - Monday's physio appointment felt nothing short of disastrous.   Still, being unconscious usually feels better in that moment!

“Is all that we see or seem,

But a dream within a dream?"

~  Edgar Allan Poe  ~

t minus 17 days

One week down

"Success is dependent on effort."

~ Sophocles ~