Fundraiser | Love Your Brain | Inverted Perspective

“The greatest danger for most of us is not that we aim too high and we miss it, but that we aim too low and we reach it.”

   ~ Michelangelo

For various reasons, it has been a long time since I have posted anything on my blog.  For a long time, I was unable to use screens due to a TBI (traumatic brain injury) I sustained in 2019, following an earlier concussion in December 2015, when my car tyre blew out.  This also caused a major Lyme relapse.  I completed Lyme treatments (2017-19) & I’m currently in remission with no Lyme symptoms, but some lingering fatigue remains.  

Throughout, I continued my shoulder rehab (watch this space, I have more to say!); I also had neuro rehab for my TBI from 2019, as well as PT treatment for my neck & jaw.

Eventually, after finding an incredible surgeon, who promised he would try to find a solution, in August 2021 (as I’ve documented on social media) I had ACDF surgery - anterior cervical discectomy & fusion (C4-C6) - to stop the discs compressing my spinal cord in my neck & to remove instability.

It’s been a hell of a decade: challenges, hard work, progress… repeat.

(Photos below.)

The quote at the top of this post is one that I have really focused on during these difficult few years.  It continues to resonate with me in everything I do.  In the past few years, mindfulness, meditation, & yoga have all played key roles in shaping my journey.  I am now hoping to continue this path by completing qualifications that will help me offer these supportive tools to others.  I’m fundraising for Love Your Brain, the organisation which offers support to people with brain injuries as well as training courses (more below).

If you know me, or have read any part of my blog, you will know that determination is just in me.  Sometimes I’m not entirely sure where it comes from - but it’s there, shoving me onwards, despite my conscious (sane, rational) brain protesting at times.  It’s not been an easy journey, & I continue on this winding path of rehab, recovery, and healing, but I have never stopped aiming high - and it has been worth every crazy moment; every effort to keep moving forward; and every annoying insistence to medics focused on ‘acceptance’ that I would not stop looking for ways to continue to improve.

There’s a lot I could - & will - write moving forward, but I am returning to my blog as my health improves enough for me to return to life and (surprise!) I decided to start by throwing myself in at the deep end…

As part of my treatment, and understanding how to live with a brain injury, I completed two Love Your Brain Yoga, Mindfulness, & Meditation courses run by Love Your Brain, a charity founded by US Olympic Snowboarder Kevin Pearce after he sustained career-ending TBIs. 

All classes are free for people living with brain injuries - including those caused by Lyme Disease.  My worlds collided in those courses.  

These classes, and the tools and skills I learned, and continue to develop, have helped me with all the health challenges I have face, and those I still live with.

Looking back several years to this post: Meditation Failure, I would never have believed where this would all take me!

My perspective has changed in many ways.  

Follow my journey @inverted__perspective on Instagram.

Diving in

Last week I made a last-minute decision to apply for a Love Your Brain Mindset course.  After completion, I will (hopefully!) be qualified to help provide the same valuable tools and support to others as I was fortunate enough to receive at a critical time.  I am also hoping to complete a LYB Yoga Teacher for TBI course in June. 

I applied to the LYB Mindset course last Tuesday, was accepted on Wednesday, started on Thursday, and have since completed 6 modules!

I've been awarded a partial scholarship for the cost of this course and I'm aiming to raise £525 ($675) to cover fees for both courses.

All funds raised will go to LYB.

If you can support me, & Love Your Brain, in any way - donations &/ or sharing my post, blog, or fundraiser link - it would be greatly appreciated.

My GoFundMe page is here: Love Your Brain Fundraiser

Fundraising aim: £530 ($675)  

All money raised will go to the Love Your Brain Foundation to support the amazing work they do around the world - in classes & online - to support people with brain injuries.

(N.B. GoFundMe automatically adds a 'tip' of 15% to your donation. This money goes to GoFundME. It is optional & you can select to opt out.)

You can read about this amazing organisation here: https://www.loveyourbrain.com/

As an extra thank you, I will enter all donors into a random name generator to pick one winner for this handmade ( - by me: gfmjewellery) Swarovski crystal, pearl, & semi-precious gemstones wrap bracelet. 

If I exceed my target, and raise extra money for LYB, I will offer a second prize draw for a custom piece of jewellery - to be completed after the course ends!

My fundraiser is now live and will run until Saturday April 16th (midnight UK time; 7pm US Eastern).

The winner will be selected via a random generator & announced on Sunday April 17th.

As for further updates, they say a picture is worth a thousand words, so here are a few snapshots of my journey to date - and I promise more blog posts coming soon!   

As always, I’ll end with a quote: 

“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.”

   ~  Socrates

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

Ticks and dinosaurs

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.

A few awareness points for 2018.

Ticks have a few - million - years on us! That's a lot of time to adapt to environments, spread throughout the world - e.g. migratory bird patterns are thought to be responsible for carrying ticks across continents... although maybe they were there first too. 

Again - tick prevention is best! Use repellent when outdoors and make sure it says it specifically repels *TICKS* on the label.

Ticks carry, and transmit, borrelia burgdorferi, the bacteria that causes Lyme disease. The bacteria have a 'spiral shaped tail' which they use to bury themselves deep in the body where they set up colonies and excrete biofilms to 'hide' from the immune system (plaque is a biofilm - think old toothpaste adverts with the bacteria hiding under the plaque... imagine it deep inside the body, microscopic...).

The importance of immediate treatment for a tick bite cannot be overstated. The bacteria quickly try to get to 'safer' parts of the body, where it is difficult to reach them with medications. Treating an immediate infection - acute Lyme disease - should* kill the bacteria while they are in this acute phase, and when some bodies may launch an immune response (some people never produce antibodies; the reasons are unknown). If you can kill any bacteria before they travel throughout your body, the prognosis is generally good. 

(*There are documented cases of people who received treatment quickly, but still developed systemic Lyme disease; however the quicker the treatment, the lower the risk.

After the bacteria enter the disseminated stage and the illness becomes systemic Lyme borreliosis, it becomes much more difficult to reach, and impossible - with current medical testing - to know if the infection is, or can be, eradicated from the body. More Lyme experts, who have been working in Lyme endemic areas (mainly in the Eastern U.S.) for decades, are now using terms 'relapse' and 'remission' for patients who are battling systemic Lyme disease.

Please, use this information - don't wait, seek appropriate treatment immediately if you are bitten, or if you suspect you have been bitten.  One bite truly can change your life.

#LymeDiseaseAwareness

Tick Awareness

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.

A few awareness points for 2018...

The CDC actually released these images on social media. 

How many ticks can you find on the poppy seed muffin?

Clue: there are 5 (yes FIVE) ticks on this muffin. 


.
.
.
.
.

Have you found them all?

.
.
.
.
.

Scroll down for the 'reveal'.

.
.
.
.
.

Look closely - can you see the legs? 

Would you find them on yourself...? Or on your child, or your pet? Ticks are tiny - they can be as tiny as this full stop ➡ .

Know how to remove ticks if you live in an area with ticks. (That's across the UK now - search 'The Big Tick Project' for updated tick maps produced by Bristol University. Remember mapped ticks are only from voluntary reporting by vets.)

Most hiking and outdoors stores sell tick removal tools - the easiest way to remove these tiny ticks. Importantly - never squash or smother a tick, always make sure you remove it by its mouthparts, and make sure no part is left in. See your GP if you are bitten and make a note of the new NICE guidelines (for England & Wales) in terms of how any tick bite should be treated.

Prevention is better than cure - wear repellent. 

Also, remember,  we don't actually have a cure, so speedy treatment is essential! 

#LymeDiseaseAwareness

MAY is Lyme Disease awareness month

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.

A few awareness points for 2018...

All around us dangers wait,
Worse than any thriller:
Somewhere hidden in a field
There lurks a cereal killer.
~Simon Andrew

While this is an amusing little play on words about field mice - spotted in a local eatery, south of Edinburgh, of course my mind went to the hidden 'serial killer' - also hiding in fields... and in mice: TICKS! Mice make good hosts for ticks. They offer food, heat, and usually find themselves a cozy home for the winter - ticks are brought into our homes and gardens by pets and other small mammals or birds. 

Always remember to TICK CHECK yourself, kids, and pets when you have been outside - hiking, or simply playing in your own garden.

And while wordplay is fun under artistic licence, it IS important to know the name of the disease:

LYME disease

or

LYME BORRELIOSIS

Names are important: to be taken seriously, it is important that the medical community, and the general community do know the correct term.

Share what you know, you could save someone's life.

#LymeDiseaseAwareness

Perfectly Imperfect

November mindfulness: Day 4 - 'Perfectly imperfect'

Taken from my instagram post:

#mindfulnovember  #perfectlyimperfect  #day4  #mindfulness  #scar  #18staples  #scapularsurgery #scapularmuscledetachment  #shouldersurgery  #myscarmystory  #notoplasticsurgery  #bodyshaming  #lovetheskinyourein  #blogger  #outofthelymelight 

It wasn't difficult to think about what 'perfectly imperfect' made me think of - my scar.... obviously! Although this isn't exactly what I envisioned writing...

Scars are my battle wounds. From injury to surgeries & beyond, they are part of me; they remind me how strong I can be - they are a sign of strength and healing.  I blog to spread awareness of a rare injury; to show anyone can rise to life's challenges; to tell MY story; and hopefully, to help someone else.  Recently I posted images (see picture 4 below) following cupping treatment showing my scar, plus swelling & bruising, as well as a skin reaction to my PICC line dressing adhesive (for Lyme disease IV treatment).   

A plastic surgeon commented under my photo - maybe I would be interested in her 'regime' (which from her instagram page seems to be plastic surgery and botox). My first thought was why is a random doctor commenting on this? Occasionally I've had comments or mesages/ emails specific to my surgery (it remains, over 5 years later, relatively unknown in the world of medicine), but this was different.  I did look on her instagram page - it's filled with very stereotypical photographs and commentaries of facelifts, botox and 'we can 'fix' you'-type stuff. I did not look further on her website, as suggested - I'm not interested, but the bigger implication was: this imperfection could be fixed. 

Not something I have ever thought about, looked for, inquired about, written about, etc.

I'll admit this hit hard.  I have never hesitated in sharing my photos, or talking about my surgery; and I have built relationships and networks with other patients who have contacted me over the past few years. Suddenly I glimpsed it from a different perspective. Why? Does this doctor think I should hide my scars? Is it appropriate for doctors to target other women (or anyone?!) on social media?  Is it ethical? Is 'scar shaming' a thing I've naively avoided thus far? In that initial moment I was stunned: shocked, then quickly I felt angry.  Have I been cyberbullied by a doctor?  I am not ashamed - I blog and post photos of the good, the bad, and the ugly. Reality.  I don't intend to change that.   

2012-2013
Pre-surgery -> healing over 1 year
(Bottom left, 2014, pre-surgery number 2)

October 2017: post-cupping therapy

October 2017: 1 day after cupping therapy
Can you see my scar?
Can you see my symmetrical scapulae?
I.e. the visible evidence of successful surgery...

Collage from instagram with plastic surgeon's 'innocuous' comment

It's not blatantly nasty, but after looking at the instagram page (with no interest in browsing her website), it's very difficult to draw a different conclusion.  I decided not to reply.  Now, my instagram post, and this expanded blog post is my reply.  It's not a reply to the doctor, it's my reply to anyone with the mindset that any part of the body is imperfect and needs to be 'fixed'.

I was just going to ignore it until I stumbled across this Buzzfeed article about actress Sarah Hyland ('Haley' from Modern Family) the following week. She has a health issue and a magazine published an article speculating she had plastic surgery.  Buzzfeed relayed her response (via twitter) to the magazine where she (rightly) raged at doctors speculating over her 'potential surgeries' and made clear the 'changes to her face' they were commenting on (there's another controversial topic on its own.... how about people just stop doing that?) were the result of "life saving medication".  (I don't usually read celebrity news/ gossip, but apparently she has suffered with kidney disease since childhood and it was not 'new information'.)  The timing was serendipitous.

I may not be famous, I may not have much 'reach' with my comments or my blog; but I think it is every bit as important for anyone, whether targeted publicly or quietly, like this, to stand up and say this is NOT OK.  If one person reads this and takes away that message, then it is worth saying. 

And, FYI, my scar looks fucking awesome. My PT says it looks just like a plastic surgeon did it. 😏

31 Dec 2014: Shoulder surgery 2 - capsular release

March 2012:  <2 weeks post surgery

End of March 2012: 1 month post-surgery

Incision healing progress March 2012 -> March 2013

   "The scar meant that I was stronger than 

what had tried to hurt me." 

~ Anaïs Nin ~

November Mindfulness: Comfortable

November Mindfulness: Day 3 'Comfortable'

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

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

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

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

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

Insomnia driven brain = best creative ideas EVER.

😴

Comfortable
#bednest #pillowfort #icepacks

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

"Insomnia is my greatest inspiration."

~ Jon Stewart ~