Mindful November

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

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

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

~ Thich Nhat Hanh ~

It's October!

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

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

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

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

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

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


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

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

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

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

#TBT Happy Memories

A happy memory, something nice to write about. Something that brought genuine smiles to my face the other day. So I figured that definitely deserved a blog post. 😀

I have a lot going on again, health-wise - with my utterly f*kced -up shoulder; a worsening Lyme relapse; add a pinch of stress, a shake of trauma; mix together in the year from hell (not exaggerating) and simmer indefinitely at boiling point, and I feel that adequately describes my life right now - as briefly as possible. That's all for another day. 

I'm painting a picture of just how delighted I was to have something truly make me smile.  It's a stark contrast right now, and it was an important reminder that remembering the good stuff is truly important.

I do feel like I'm battling through each day, rarely emerging on top, and the longer that goes on, the more difficult it becomes to find positives.  Honestly, it's beyond frustrating - there is nothing I wouldn't do or try, right now, to make things better... and I have; I have tried everything you can imagine, and more. And worse than frustrating, is the soul-crushing feeling of admitting  (even to myself) this 'new thing'/ 'new person' / 'new whatever' - that initially held such optimistic promise and gave me a glimmer of hope, is not 'The Thing' I am looking for.  It's like treading water - kicking so hard all the time, but never actually getting anywhere.  Right now, the challenge is to keep kicking; to keep my chin above water long enough to  survive. And hopefully I can take control again soon and get back to seeing my wonderful doctors & physios in the US, who helped me make great progress before - I am sure I can work hard and make it happen again - and most importantly, get on with my life.

But, appreciating the small things just now;  I woke up a few days ago and my ex-gymnastics partner had posted a #tbt on social media that really made me smile....

Colette on base, me in the middle, Amy (always!) on top
*
Colette kicked it off by writing: #tbt to holding two humans up with my own two legs....

So, of course, i dug out out one of my own photos to post too.... and captioned it 'to when I could hold up two humans too... on my shoulders' - which probably won't be happening again. Definitely not any time soon. Although one day..... who knows?!  

Me on base, Colette in the middle & Amy on top.

It's a long time since I really really looked at those photos and took the time to think about what we did; how much I loved it. Comments on social media reminded me how funny I always found it when non-gymnasts learned what I did. It was just something I grew up with - it was normal,  in my world. I remember once, in training, the balance in the second photo came tumbling down and the full weight of a 10 year old landed on my head (think: approximately 1.5 times the weight of a checked bag for an international flight)... while I was in splits. There was the usual call to my parents - I'm ok, but please pick me up from A&E instead of the gym tonight - a soft neck collar from my physio for some damaged muscles/ tendons/bruised bones; and probably a couple of days off uni. None of that was a huge deal - you really couldn't learn new things without the odd fall.  But the thing I remember most about that was going into uni with a neck collar on ('normal' people react to those things way more than gymnasts - lesson 1); someone asked what happened, so I very briefly explained. The girl who asked stared back at me... "You can do the splits?!" she replied, sort of incredulously.  I remember staring back, feeling like I'd been dropped in an alternate universe. At the time, we were the only trio in Britain competing that base position with no hands (- my hands are not on the floor); all I could think was I can do the splits..... that's what you got from that?!... practically everyone I know can do the splits. .. But, of course I sort of smiled and nodded, and had umpteen similar conversations through that first year of university!

Growing up, friends knew me as a gymnast, it was so much a part of my identity. When I started uni, and conversations like that happened; I had to realise my little world was a little different sometimes. ( But doing the splits in a bar always ended with free drinks! 👍🍸😆)

 So I guess it was nice to slip into that world again, through those photos. It's so easy just to close my eyes and imagine I'm still there. 

 My old gym partner and I had a conversation about it, reflecting on that time and thinking about how in sync we were ALL the time - how we all took it for granted, but it really is quite incredible when you really think about it.... and there was always such a natural feeling to it - we didn't have to work hard at being in sync (we had to work damn hard at everything else!!); we were just in tune with each other. I think with all those years to reflect, it is a pretty amazing thing! (But really, being able to do the splits  STILL impresses people more! 😂.... trying to maintain my core strength & leg strength is important... therefore exercise = stretching. I could do splits with a sling* on my arm! *Not the crazy, giant post-surgical one.... I could hardly move anything at that point - couldn't even put on socks! However, arm supported & I can (sort of*) still do the splits now! 👍💪*'sort of' - as in: if you're a gymnast, my hips are twisted, my back knee is twisted and I'm really not sitting up straight, or comfortably; if you're not a gymnast, I can totally still do the splits! 😉 ) 

We trained together ALL the time, but we just loved it. We both talked about how much looking at the old photos really made us smile. They are absolutely fantastic memories to have - and to share.

 We worked together so many hours every week, completely trusting each other - really with our lives (the risk of serious injury is high!! See the photos?! ⬆ - and, like I said, they did come tumbling down occasionally! Everyone's  did!!), but in among all that, I don't have a single memory of fighting, or falling out - we just loved what we did.

Given my blog is generally medical, and this x-ray might be the coolest thing ever, this seems a good place for it! (From Pinterest)

Most of this blog documents my 'journey' 'out of the Lyme light'  -  (and in, out, in, out, slip downstairs, have surgeries, somersault in my car... turn it all about....)  that wasn't exactly my intention - obviously!  - my intention was to spread awareness of Lyme in the UK (again, uodates there require a whole load of other posts....); but it unintentionally became my personal blog as well as an awareness blog - about way more than Lyme Disease. It is very much about what's going on in my life right now... and I can't wait until I have something more exciting and interesting (in a GOOD way!) to write about. 

But for right now, in this moment, it's nice to have something else to think about and write about; and to remember what was genuinely one of the happiest moments in my life - I loved competing. We loved competing. I do feel lucky that I can look back on these photos and conjure up so many happy memories - they spark so many gymnastics-related memories, and they all make me smile. 

Not 25 years yet (!) But I'm sure we'll still feel the same in that far, far distant future :-)

And it DEFINITELY came into play, I guess...

Along with this - yes, gymnastics 100% taught me ALL of these things; it's also a good reminder that these are most definitely transferable skills.

And when my dad complains I am being stubborn (I get it from both sides, it really shouldn't surprise him), I tell him that's how I've SURVIVED!!

And honestly, now I really don't know if I'll ever be able to handstand again or not... I'm pretty sure I won't ever stop hoping & then hopefully trying - at some point, because being upside down always feels best! However, I definitely want one of these tops... because: once a gymnast, always a gymnast!

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.

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 12 days

"Some are destined to succeed, 

some are determined to succeed."

~ H.H. Swami Tejomayananda ~

There's no such word as CAN'T in the gym....

Thinking about pain, physical therapy, surgery recovery, pain... again - it's hard not to think about it when you feel it 24/7, screaming at you above everything else; stealing your concentration and attention away from something thought ought to be infinitely more interesting and therefore effortlessly hold your focus; but the screaming from your body just never takes a break.  So….. I have been reading about pain; pain tolerance; pain threshold; pain scales.  Trying to learn about pain, and realising that as a chronic pain sufferer, I probably know just about as much as researchers know; from a different perspective, perhaps, but the point is I did not find any groundbreaking, life-saving solution to any of my problems.  Even trying to figure out what I should be doing - at what point is it good to push my body, but still let it heal? - doesn't have a simple answer.  So if nobody can tell me, how do I figure that out?  And how do I figure that out?

http://www.pinterest.com/gmun22/once-a-gymnast/

Finding the limit is the problem now...

 I'm genuinely beginning to think gymnastics - especially from a young age -  makes your brain form differently.  This is suspected (supported by a few studies) regarding learning a musical instrument; and research into bilingualism shows language learning definitely affects neural development.  I suspect starting gymnastics at a young age is a bit like learning a language.  If you learn a language before the age of ~7 years, your brain learns it as a first language - neural connections are formed differently.  I learned the language of gymnastics well before the age of 7.  Despite the fact I haven't trained or competed for 14 years in gymnastics, or 10 years in trampolining, those things don't leave you….. No matter how much you try!

http://www.pinterest.com/gmun22/once-a-gymnast/
(Typo not mine!)

  

The language of gymnastics [abbreviated]:

"There's no such word as can't in the gym"

"If you think you can't, you won't"

"Always end on a good one"

And things like this make perfect sense:

http://www.pinterest.com/gmun22/once-a-gymnast/

*"you're in the air"
Typo not mine... again!

Because that is how you get results: 

My last British Trios Finals 2001
(before I broke another bone & had to quit)

But now…...

"There's no such word as can't in the gym"

To physio:

"Yes, you can push my arm as far as you want... did I tell you my gum is bleeding because I'm biting on it?  Just saying…"

"Yes, I can do this - I can still see in front of me, it's only black behind me, so I'm fine."

http://www.pinterest.com/gmun22/once-a-gymnast/

"If you think you can't, you won't"

To physio:

"Yes, this is ok....... should I be feeling sick though?"

"Yes, it's going - how sore should it get before I stop you? It's beginning to sparkle now…"

http://www.pinterest.com/gmun22/once-a-gymnast/

"Always end on a good one"

To physio:

[Eyes closed, sweat dripping off me, breathing increased, heart booming, room spinning]: "But I didn't do the full set... I'm not finished...*Will this actually do more damage...? No? OK. Finish then."

*(Um, yeah I confess to doing this one on Wednesday - yesterday.  It was 'only' two more reps... out of a total of 5.... for a muscle that hasn't really worked that way for 43 months. I slept in the car on the way home.)

[Ditto]: "But that last one was terrible..... I'll just do one more." [Collapse on floor]

http://www.pinterest.com/gmun22/once-a-gymnast/

So apparently I have 'syncope without loss of consciousness' - that means fainting without actually appearing to faint.  This adds to the confusion - have I fainted?  Or not?
THEN WHAT DO I DO??!!

Lesson:

Physios do not count any of those as "cans". (Sometimes they shout at you, actually.  Nicely.)  'Trying' when it is sparkling or black behind you or you are seeing black dots; you can taste vomit, or blood; you are dripping with sweat after lifting (holding, really) a ONE pound weight; you can only do it if you close your eyes……..  do not count as 'trying' either.  They are generally regarded as doing too much and produce orders like "Stop. Now." or "Lie down….. Lie down NOW." or shouted to their interns - "get me a chair!"  and "get me water!"

In the gym, bleeding gums, spinning heads and feeling sick may be the norm; recovering from an injury is not the same as gymnastics. (Mantra: repeat ad infinitum.) 


Second Lesson 
[doctor/ physio attempting to enter my head]:

"If you worked really hard at training one day, you would take a rest day the next day.  This is like that."

"It's like anything: work a day, rest a day, work a day, rest a day…."

"If you were sore after training one night, you would take the next night off, wouldn't you?"

Umm……. I'm really trying, and I know what you're saying here…….. but I don't understand………..

Yup.  I think gymnastics skews your perspective on life.  It means we learn young how to work hard, develop great time management skills*; we are trained to demand perfection from ourselves - on top of a natural instinct; to never give up (and in our heads, we still think our bodies have the capabilities it had when we were teenagers).  Getting injured (severely) is not a good idea.  Physios and doctors - you will probably hate any ex-gymnast patients you have! (Also because we also know exactly how we like our ankle/ wrist/ knee/ elbow wrapped; what tape we want to use, and exactly where we want it...)

*Yes Mum, I know this does not apply to me right now....... I have good reasons! And I really do try!

Just for fun.... things that are not really 'normal' (apparently):
(All from: http://www.pinterest.com/gmun22/)

I'd kind of forgotten about this, but it didn't strike me as
abnormal until I read this on Pinterest.  Last year!

As do gymnasts!

I didn't realise this was weird until the first time we did a group project
at uni and everyone was kind of staring...

It's incredibly difficult to resist this.  Still.

                                     

This is not normal? I still don't understand.... it's natural!

A little nostalgia:

Yeah, see below!

What a feeling........!
(Yes, that's me.)

 And too true:

However, I also think - a little bit of that stubborn determination built in may just feel like it's saving you sometimes.

http://www.pinterest.com/gmun22/

‘The greater danger for most of us is

not that our aim is too high and we miss it,

but that it is too low and we reach it.’

~ Michelangelo  ~

Don't slip

Sometimes the wisdom of tea bag tag philosophies is questionable....

Bed-time medications say otherwise!

While I completely disagree -  in my case 'slipping with my feet' was definitely a very very bad thing, and I am sure there are MANY people who are agreeing with me here, after suffering the consequences of a 'slip' or fall; I do get the point. This one sounds more like something that has come out of a fortune cookie than my usual tea bag tag philosophies!

I will agree 100% that 'slipping with your tongue' can be highly damaging and upsetting at times too; but (especially right now - and from past experience), 'slipping with my feet' is NOT a good option either!

Moral of the tea bag tag - just don't slip!

For people with 'invisible illnesses' - who put in (at least) twice the effort getting ready and at least five times the effort just doing 'normal' things; it can be difficult when people, even well-intentioned, say things like "but you look really good" or "what do you do all day?"  This often feels judgmental, even if it is not meant as such and it can make us feel as if we have to defend ourselves to 'prove' that even as we sit and have coffee, or dinner, and chat, that it is always a case of 'mind over matter' - with a limit on the time we can 'survive' it.  The intensity of the invisible icy-burning metal rods being pushed into my shoulder like a torturous version of kerplunk doesn't go away when I socialise, I just have to ignore them as much as possible, and (when possible) socialise on days where they are a little less aggressive; the sparkling lights in the room, and the nausea that accompanies them have become almost normal - the nausea is kept mainly under control with tablets and the sparkling lights are now ok until they get darker - but sometimes it makes it harder to concentrate and take everything in as normal because of the mental energy required to suppress the urge to lie down in a quiet place and instead focus on the conversation. 

Sometimes I almost wish there could be some sort of running commentary for an hour - just to  explain what's going on in my body... maybe even 10 minutes would show how many things I'm actually dealing with all at the same time.  It might seem like I'm just sitting having a conversation, but I can also be assessing how nauseated I feel, and working out when I last took a tablet and when the best time to take one so I can eat dinner is; thinking about whether applying my pain cream, or a lidocaine patch would address the burning feeling that radiates from under my scapula and feels like it could burst out of my chest; the funny movements - neck stretching, arm extending and twisting - are because my hand is going numb and I'm attempting to stretch out the nerves to 'decompress' them and hopefully relieve the burning, icy numbness in my hand; I'm frequently adjusting my position, trying to get comfortable on chairs designed for people at least 2 inches taller than me (really!! my feet never touch the ground, it makes for very uncomfortable pulling on muscles); and trying to make sure I move when I feel spasms starting in my neck so they don't transform into a horrendous headache.  

On top of all the constant assessing, working out, and attempting to relieve symptoms, I am working hard to suppress the pain for a while, long enough to be social - considering different ways to ignore it, or ease it - if possible.  Going out anywhere is like going out with a baby. I have to make sure I have my meds, my TENS machine, my numbing patches, water; I need to have a plan so that I know how many tablets to bring - I don't like carrying loads with me, but I need to have enough to cover the planned time out, plus an extra dose (always a 'just in case' plan); I also have to consider how warm or cold I'll be - I can't carry a jacket with me, so if I don't need to wear it, I'll just make sure it's in the car, but if I DO get cold, I start to get shaky and then my pain increases, so I have to make sure I have something warm, but light, because if I'm walking about and it's too heavy, I'll get sorer faster (this usually just amounts in throwing half my wardrobe in the back of the car to cover all eventualities); and then decide whether I need my sling; if I have pockets, will they be enough, or should I also wear an infinity scarf....? (Again, usually the answer is just to make sure it's all in the car!)  So while I love socialising, going out for dinner, sitting and chatting - my brain has to constantly evaluate and balance the pain it feels constantly, decide how I can mediate it, and hide all of that while I also attempt to pretend everything is ok and I am having a good time......... and it's not that I'm NOT having a good time - I love spending time with my friends and family - it's just exhausting.

I found this on someone's 'chronic pain' board on Pinterest the other day, and it made me think about all that in more detail, and it makes sense in my head, when I split it up like that, why I DO get so exhausted when I do anything..... my mind never gets a rest (and that's on top of its normal never takes a rest!)

And even writing that, attempting to explain it on here (to myself as much as anyone who reads it); it feels very much like complaining - which is why, ordinarily, every day I do all that silently.  I don't want to be the person who complains all the time - and I try very hard not to complain, I don't think it achieves anything.  It can be difficult to distinguish between complaining and explaining, if the circumstances are wrong.  Since my blog is supposed to share the honest truth about dealing with Lyme disease, and dealing with my shoulder recovery, hopefully that all seems more like an explanation than a big long moan!

Going through Pinterest boards that deal with these issues is interesting to me because there are so many graphics, like the one above, and others I've posted, that help to visually explain what is going on.  In a way, it's almost comforting to see that so many people dealing with pain and/or invisible illnesses post the same, or similar, graphics.  I'm sure we all wish we weren't paying any attention to them, but the idea that it is 'normal' within all this abnormality to feel a certain way brings with it a strange kind of comfort.

Be kind, for everyone you meet is fighting a harder battle

   ~ Plato

Listen to the whispers

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

Tonight my teabag said:

http://www.yogiproducts.com

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

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

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

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

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

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

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

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

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

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

http://www.pinterest.com/gmun22