Lyme looks like...

Lyme disease awareness

One last thing I really want to draw attention to. I've written it before, it's known to be a fact by anyone who knows anyone with Lyme disease - an not usually before...

Lyme disease is an invisible illness

This does make it difficult to understand - trust me, it makes it difficult to LIVE, never mind understand. 

Do I want someone to say, 
"You look great today!"
... erm, well I thought I wanted it, but I feel like the room is spinning, my head is buzzing, a migraine is threatening, and I took double my anti-nausea meds.... GREAT you say? Really?

Ok, so I want someone to acknowledge how awful I feel.. [usually my mum...]
"You look awful today..."
...AWFUL... I know I feel awful, but do they really need to TELL ME... OUT LOUD?!

It's complicated...

These are all photographs of me taken in the past year:

A couple in bed: bad days, also I think I'm infusing meds in one.

In others I am ready to go out:

I will do something normal.

I will enjoy this.

I will not throw up in the car...

Make up: mask, concealer, eyes painted open

Cap: I've not washed my hair... But isn't my 'feminist' pin cute?

Braid: I've not washed my hair, but I'm still at the dry shampoo stage.

Sunglasses: either you're not seeing the bags under these eyes; or my eyes are not tolerating any bright lights today.

Lipstick: a secret I read in a magazine - bright lips distract attention from anything else! (Seriously... it works, no other makeup required... although maybe sunglasses... and a cap 😉)

Really, when it comes down to it, we don't want to be ill. We don't want to 'look sick'; but we also don't want to be doubted. And no, sorry, I don't know what you're actually supposed to say to a friend. Just be nice. Believe them. And take chocolate. Or herbal tea. 

Realities: Lyme treatment

Lyme disease awareness

This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.

The 

A few awareness points for 2018...

How many times does anyone really want to hear...
 - get treatment fast
 - wear insect repellent 
 - "TICK CHECK!!"

❓❔❓❔❓❔❓❔❓❔❓❔

Definitely enough times for it to reeeeallllly sink in - because, let's get personal today -  PICC lines are not fun. Neither is Lyme. So let's just reiterate:

-You don't want systemic Lyme disease. Full stop. Just no. You don't even have to consider the PICC line: obviously you don't want a debilitating, poorly understood, difficult to diagnose, impossible to cure (for sure) illness. OBVIOUSLY  that goes without saying.

BUT STILL...

-You don't want a PICC line (personally I've not had any other kind, but really, you don't want *any* kind of line)

So, again:
INSECT REPELLENT! 

IMMEDIATE TREATMENT! 
REMEMBER! 

It's not just a case of suffering through a simple (or guess who got lucky.... complex) PICC insertion (see post from last June) & then zapping some meds into your line every day... there's:

PICC problems

1&2. The inevitable irritable skin from constant dressing changes, skin cleaning/ disinfecting/ sticky sticky itchy dressings... and a tube coming out your arm... vein.

3. The body trying to heal around a hole it doesn't want to have there - because that's it's job, right?! I didn't zoom in too much here (on purpose, you're welcome); but you can see the slight crusting around the edge of the line - it has to be scrubbed away at each dressing change too. And THAT'S fun. 😒

4. Just a reminder from my 'PICC placement pic' - it is not a case of 'hello vein, meet line (tubing?)...... hello heart, meet line' 😊. Sure, most PICC placements are nothing to freak out about... (Hundreds of people have told me. Honest.)... they still involve some 'numbing' shots, some maneuvering through veins, into bigger veins and making sure the line rests exactly close enough to your heart for the meds to get in the right place, and exactly far away enough for it not to 'tickle' your heart. (I'm lucky I didn't experience this, but I'm going to bet 'tickle' is one hell of a euphemism!) 

Then it has to stay there, thankfully with a little wiggle room, as - again - the body should reject foreign objects, so it can push it out entirely, or - in my case, thankfully - just a little wiggle over time (carefully marked by dots, wiggle is also a euphemism; my line: 39cm with 2cm leeway - this IS an exact science).

And really - does that look like a happy arm? It was not!

Then comes expecting the unexpected - because it always seems to happen, randomly!

Life adjustments

1. Creativity required at times. One day I had to take a full bag home for the next day (not frozen, or unmixed):
"Keep. It. Upright."
Umm.... ok. 
Let me remind you:
Left arm has the PICC in it... please remember that's my good arm! No holding that bag up with either arm. Hello car-mirror-IV-hook.

And perfectly chosen socks for that day. 

Actually - it's AMAZING how many things can be fashioned into some kind of IV poles... lamps, curtain rails, coathangers, scarves, brooms...

2. While the body may try to push out PICC lines, scab over them, react angrily to being scrubbed and covered all the time, sometimes it just says, NOPE. NO MORE.

This day, my poor, poor body did not want to give up any blood (did I mention the regular blood draining to check the medications aren't destroying other organs? Another reason you really don't want systemic Lyme /a PICC line/ these awesome meds). Occasionally my line & body work together and give my doctor or nurse 'decent' blood, suitable for testing, out the line,  o needles required. Wonderful days!* There were other days where the blood looked perfectly fine to me - apparently not. Those are needle days.

Then there was this day. On this day, my veins were giving out nothing. The needles were in (SEEEEEE the holes?); but there was no blood. My nurse and I literally stared at the little butterfly needle, clearly in my swollen vein and not a drop of blood came out. Twice. Until, of course, she (kindly) gave up for the day. Then there was blood, and bruises, and ice from the coffee shop...

An unhappy body is another reason not to want a line - your body definitely doesn't want one either!

So... seriously: 

#LymeDiseaseAwareness

Rare disease day... the perfect date!

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

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

'Shoulder stuff'

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

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

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

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

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

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

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

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

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

  

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

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

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

Hallowe'en

Not a great time of the year for Lyme. Well, not that there's a good time for Lyme, but....  Hallowe'en is an excellent reminder because it's really just supposed to be FUN. (This year I was Sleeping Beauty. Probably with less 'beauty' and more 'zombie' - although 16 hours sleep might add some points...)  

Also the no sugar* (healthy fuel, healthy body.... we only had a little left over 😋) and no alcohol (stops medication working), um, and no energy really take the fun out of it.

... Can I just take a moment to point out I've not had a SINGLE cocktail since May? Not ONE drop of alcohol. Psychic mother even cut short my mental arithmetic in a restaurant as I was attempting to calculate the half life of this really really really really tempting cocktail and whether it would be out of my system by the time I infused my next dose of antibiotics. Imagine:

Scene:

'HARVEST'

Local & organic 'farm-to-table restaurant

LONG ANTICIPATED FIRST VISIT 

(Anti-nausea medications perfectly timed -  I was HUNGRY!)

ME: [silently thinking] I could eat almost anything on this menu... so many veggie choices!  Organic cheeses! Wild caught fish!** Grain bowls.... quinoa! Wild rice! This must be how a normal person feels when they could have practically ANYTHING from a menu*...
How do they choose?!

[turns page] 

oohhhhh, those cocktails sound so good.... green tea with cucumber vodka & lime... I wonder how many units of alcohol in a martini glass here? I could have it tall.... I wonder if antioxidants in green tea cancel anything out? I wonder what the half-life of vodka is... [reach for phone, unlock screen...]

PSYCHIC MOTHER: [barely glances up] Don't bother calculating how long it will take to get a cocktail out your system.... you have blood tests in the morning, they'll still show alcohol.

ME: I was just looking.... 
😲

 [thinks] Damn. Blood tests. Forgot about those. But wait..... HOW DID SHE KNOOOOW??!! 

*Limited diet: general super healthy diet supports treatment; some treatment protocols follow specific diets
**Yes, technically I'm 'pescatarian', but I think it sounds a tad pretentious. And super-extra hipster...

Now THAT'S spooky!

PSYCHIC MOTHER
My Dad used to joke to my Mum, "If your mother was a witch...." & trail off
Not sure if he got scared 😉 or realized he was saying it about me too...😜
But this photo is just too good....!!
(Don't have to be psychic to guess she's not going to love it as much as I do.)

Back to today.... there's dressing up in elaborate costumes (yourself, house, child, dog... whatever)/ the excuse to dress up or wear crazy make up if you like doing so, but need the excuse! And the million different Pinterest ideas you just HAVE to try one day (mostly baking - with more sugar). None of those is especially 'Lyme-friendly' (it's that 'I need energy' thing).  I didn't even get pumpkin carving this year... putting a hacksaw & 'the sharpest knife I can find' in either hand didn't seem like the best idea... A little decorating, joint effort:

The American 'Happy Halloween'
does puzzle me...

I did binge watch Stranger Things 2, at the weekend, of course, (it's SO good!) because my weekends are for resting right now: "resting enables healing"- not something I usually embrace, but thank you Netflix!  But (no spoilers) while attempting a couple of 'very simple' Pinterest Halloween projects in the garage; there was scratching in the roof space above my head, and the first image that popped into my head was a demogorgon. I mean, not consciously, a good story just stays with you, right?! 

At least I still have 2 arms ;-)

I have to admit, anything I manage to do successfully with my arm (arms.... PICC line has been a bit uncomfortable too, I've had to be extra careful with it) feels like an accomplishment - even wrapping some toilet roll around a football & a mannequin or sticking some sticks through a flower pot & some bin bags! And some creative results... in the dark!

Quite honestly, these were because I was determined not to fall asleep after physio, as napping
 seems to be messing up my sleep. I thought (hoped!) I'd sleep at a 'normal' time if I made myself
 stay awake - of course,  I never learn... didn't work!

 But my Pinterest 'shadow witches' didn't look too bad! (In the dark.)

On my hunt for Halloween quotes - specifically Shakespeare's witches from Macbeth,  I decided I like this one from Tim Burton instead. It feels like it could have many applications and feels more fitting with my blog. I definitely feel like I dress up some (most?!) days - my true self is still in bed, sleeping. Sometimes, especially this year, it feels like my brain stays with it!

"Every day is Halloween, 

isn't it? For some of us..."

~ Tim Burton ~

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....!

Simple things...

This year I started off talking about honesty.  I had nose-dived into the deep, dark rabbit hole of a Lyme disease relapse. I want to paint a genuine picture of what that really means - recently, a few articles followed celebrities announcing they had Lyme disease and called it a "fad disease" (or similar). It is not. I haven't written as much as I would have liked, to date, but hopefully each post, shared with honesty and a little trepidation, dispels that idea,  way before it enters any cultural psyche. Nobody with Lyme borreliosis would wish this disease on their worst enemy, let alone view it as 'fashionable'.

I started feeling the too-familiar, overwhelming, systemic fatigue; intolerable levels of pain, in my shoulder and throughout my body; a lot of 'brain fog'; and an increasing inability to do very much at all. Simple necessities - like a shower - left me completely floored.  It felt like I'd erased years of hard work and treatment.

Since I came back to the US and restarted specialist treatment - Lyme and shoulder PT - I have felt overall more optimistic.  I have wonderful physical therapists and we have finally started to see tiny steps of improvement (even more importantly, they say 'we' & use words like 'team' - & they actually talk to each other.... how sad that is so remarkable). 

I have a one-of-a-kind Lyme doctor, also a 'primary care' doctor (like a GP, but who 100% lives up to the better label!) who genuinely cares for me, covering every aspect of my health - and essentially, is really making inroads with tackling my Lyme relapse.

But, as I've said before - it's hard. Managing a PICC line (peripherally inserted central catheter - it goes into my arm and sits inside veins, eventually resting close to my heart so my medication gets 'right in there') requires careful care.

From Wikipedia 

 I have 2 'tubes' coming from my line and they need to be flushed with saline and heparin twice a day; plus I have to infuse with my IV medication every night, and keep on top of oral meds as well. Obviously it's critically important to keep it clean, dry and carefully wrapped.

My nurse took this for me during a dressing change.
Ordinarily, it's always covered!

Lyme treatment is pretty brutal - as I've mentioned elsewhere, and in the 'Lyme pages' on here. Details for another post. 

Invisible illness?

On top of that, I have physiotherapy three times a week - we have to be careful with the PICC, which is in my 'good' arm; and focus on my right (injured) side.  We're still working on connecting my brain with the muscles around my scapula and getting them to work. Since I came back, the positive results have really helped me push forward.  Waiting 5 years for some positive results is a really long time! So those positive baby steps have felt like giant leaps.

On a good day:
Gravity... stretching lats while supporting body;
 this pops my ribs back into place too;
 aim is hand on the floor -'above my head'.
Physio's aim is:
 1) to hold me up & not let me push it too much
2) to NEVER let me attempt to backwalkover out of this
because the good hand does touch the floor now
Me: "I'm sure gravity will just carry me over..."
 Him: "NOPE" *sits me back up*

(For perspective: 
Once, this was barely a stretch for me;
Now, this is the best range of motion
 in my arm for 6 years -still assisted.)

But this past week, I plateaued. Right from the beginning,  they told me this would be the normal pattern.... except it wasn't. I didn't plateau so much as fall right back off the cliff and start climbing from the bottom again.  So many unknown issues were discovered following that first surgery. 

So, really, this is good. It's FANTASTIC!  Finally, I am doing what they expected.... I improved a little, and I've stayed there - no tumbling back down the cliff.

BUT - no baby steps this week AND it's been a horrible Lyme week, with lots of herxing and general 'I want to crawl under the covers and come out when it's over' days. It turns out that's not a good combo, apparently...

I think 'meltdown' was the word my Dad used... 

Thanks Dad.

 Most of the time (like 99%) my Mum is my chauffeur, coffee buddy, shopping buddy, pedicure buddy; my chef, nurse, pharmacist.... all round carer & companion.  (When she gets old, I feel like the routine is already established, we'll just switch roles. Although hopefully there is A LOT of living for us both before that happens!! *EDIT: she read this & didn't know whether to laugh or cry....!)

But today she had a migraine, and my Dad was home in the afternoon... (he's delighted about that, I bet).  I had no appointments today; I had a 'to do' list - not a general 'I hope to do this soon' list, an actual 'wash my hair' - because I'm not even going to write how long it's been since I did that - and tidy up just a little and some other very necessary *simple things*. 

Not that simple. I struck out at number 1 (and so the 'meltdown' (this is not my word!) took over. The 'I can't do anything; I hate that 'do nothing' is an actual 'to do' thing because it has to be.... I can't do aaaaaaaanythiiiing......' kind of .... um, ok, meltdown, I suppose.  

Ultimately, with the male need to *do something* my dad said he would wash my hair (my skin is sensitive to the adhesives - this sensitive skin is another fantastic new side effect of the new Lyme meds *urgh* -  so I have a healing sore just under the PICC line and I can't stick the adhesive plaster over it. The insertion site us covered, and it's bandaged instead right now; but - while the full adhesive dressing isn't waterproof, it's not fabric - right now I'm reluctant to sit in a bath and get condensation on my skin/ the fabric dressing etc.). 

 When I was severely ill, before I even knew about Lyme disease, I used to get my hair washed over the kithen sink, lying on the worktop...

... in a different kitchen. I made it downstairs to see my dad setting up his 'station':

Creative home hairdressing :)

A gym/ thick yoga mat over the hob, so I could lie on it, and also because I'd wailed something about the hard surface and a sore shoulder blade - it was to make the worktop "softer". So it turns out even the simple things can make you smile on a really, really, rubbish day. And more amazingly,  my dad actually embraced some creative thinking (that was NOT football related).

And while he played hairdresser, 'supermum' had woken up and was ticking off the 'tidy up' part for me. So, with clean, wet hair, and puffy eyes, I collapsed back into bed, in a tidier room, where I'd quite honestly like to say I'm resolving not to move for a day or two - until this is over - but I've got physio tomorrow afternoon.... yay!

😞


I'm not sure who this quote is attributed to, but I'm attributing it to my mum here, because she says it constantly:

"This too, shall pass"

*EDIT Physio was kind of tough... then I got a migraine from hell. In between, I was up, out, dressed, and so (always good to take advantage of that!) Mum & I had coffee & went for pedicures - it's always nice to do something 'normal'! However, as I collapsed into bed,  and she later helped me with my infusion, she said, "This too, shall pass".... have you been reading my blog? "Recently? A new post? No..."

Too funny.

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 ~