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

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: 

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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.