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 ~

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 ~

 

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

Optimism vs. Realism

I feel as if I'm in a bit of a slump.  I had ONE really good day about 10 days ago, about the best I've had since my surgery - my cold felt like it had finally lifted, so my head felt a bit clearer, my pain wasn't really much improved but I didn't have any 'surges' of intense pain that day and, even although I was consciously terrified to think it, I did wonder if perhaps I was turning a corner; taking another step up.  Then reality slapped me in the face again and my pain seemed to increase... again... and along with that just comes this sheer exhaustion which I honestly feel seems worse the longer my pain goes on.

I attempted to power through last week - Feldenkrais, physio, a few hours out with my Mum and by Thursday my body pretty much said, no more, I'm done, and I slept for 21 out of 24 hours.  That's a record, even for me.

Sometimes - afterwards - I almost hate those good days. It's like a little hint of what could be... and then it disappears again... honestly, it just feels unfair.  And I do try my very best not to moan and complain because it's not helpful, it doesn't actually achieve anything; there are many people who have far worse things to deal with than I do; plus people who do complain all the time drive me mad.  And I think - for anyone going through anything - a positive attitude is essential, simply for staying sane... but sometimes... well, let's face it, everyone's thought it at some point: life just isn't fair.

BUT every now and then, getting it all out is good for my sanity too....!

I know this is still a long process, and I know I still have a long way to go, and I know nothing is magically going to get better overnight; I'm not simply going to wake up, have a good day and everything is going to magically disappear... I do know all that. But somehow, every good day just brings with it a little whisper of hope, a wish that this really will be the beginning of every day being a better day; and I think that is why the bad day that follows feels even worse.  It's not just a bad day, it's optimism colliding with realism at the speed of light. Crash.

Luckily, optimism is pretty resilient and lives for another (good) day.  Even if it takes a few days to pull itself together again...

So, to give that optimism a little boost, I've decided to challenge myself again to find some inspirational posters (yes, I've been spending a lot of time on Pintrest again...) for some positive reinforcement...

Agreed.

From My Pintrest Board