Lyme Disease Awareness Month 2022

 It's that time of year again... time to hopefully bombard everyone with facts about Lyme Disease - awareness, prevention, & treatments (or lack of them) as well as tick awareness.

Please share my blog posts or social media posts so people have access to this vital information. 

I started this blog in 2011, and it has been a long and very twisty journey for me, with SO many things impacting my health; however when it comes to Lyme Disease in the UK, we have not advanced very much, in practical terms, for people who are ill and need treatment.

Prevention is ALWAYS better than cure, and in the case of Lyme, that is 100% true.  Lyme can be cured if it is treated immediately following a tick bite, with the correct dose of antibiotics,  but once borrelia spirochetes (the type of bacteria that causes Lyme Disease) begin to spread throughout the body, treatment becomes increasingly more difficult.  Lyme Disease experts do not speak about curing systemic/ chronic Lyme, but about it going into remission. 

The bacteria can remain in the body in a dormant state, and become active again following any kind of trauma/ illness to the body.  I personally experienced this in 2016 (resulting in treatment in 2017, 2018 & 2019) after I had a car accident at the end of 2015.

The information below is SO important. 

ALWAYS tick check after you've been outside  - even in your own garden. 

 Contrary to some 'opinions', ticks are everywhere in the UK (& in every state in the US, & have been found on every continent, including Antarctica).

Removing a tick quickly reduces the risk of the tick spreading infections. However it is NOT necessary for a tick to be attached for a specified period of time before it can transmit infectious organisms.

 Lyme Disease, caused by borrelia burgdorferi spirochetes is often accompanied by other co-infections such as babesia, erlichia, bartonella, & others. All are difficult to detect and difficult to treat.

Ticks deserve their nickname: nature's dirty needle.

Knowing how to remove a tick properly is essential - details below:

Right at the beginning of May, as if on cue, my brother-in-law found this (well fed 🤢) tick on one of their cats.

🕷 He removed it properly, with a @ticktwister.co.uk - you can see the head is fully intact.

 To remove a tick from a person or pet, grip the mouthparts, as close to the skin as possible & pull straight upwards, with fine-nosed tweezers or a specialised tick removal tool.  Do not irritate the tick (e.g. with ointment/ flames) as this can cause it to regurgitate dangerous bacteria into the bloodstream. 

Do not twist it yourself as this can cause the mouthpart to break off and remain in the skin (if using the 'tick twister' tool, it removes it effectively; carefully follow instructions on any tool you have - & add one to your first aid kit, they make removal MUCH easier).

🕷  To safely dispose of a removed tick, DO NOT BURST.  Sticky tape is a good option - as shown here. Carefully ensure the tape is firmly stuck all around the tick for disposal, or to send for testing. 

(This is now in a sealed sandwich bag, ready to be sent away. Sometimes local vets will accept ticks to send for testing. You can search online where to send it in your area.)

🕷 The lighter part of the tick shows it has fed (it's swollen with blood). If this bursts, there is a small risk of infection if any splatter gets into an open wound, or, e.g. hits your eye. Be careful. 

The size of the tick can indicate roughly how long it was attached:

(Image from CDC website, via Google)

🕷  Wash your hands thoroughly afterwards.

🕷 Make sure your pets are flea & tick treated;  but continue to check them - tick treatment is not a repellent, it slowly kills ticks as they feed.  Be aware, if ticks drop off alive, they may then feed on humans.

🕷 So... TICK CHECK! Always!

Ticks like to crawl into safe, warm crevices in the body - check EVERYWHERE.

Check kids at bathtime, & teach them how to check themselves too.

(Be aware of any tiny freckles you have - I have one on the back of my leg that has given me a fright several times in the past!! Using your hands as well as your eyes while you check will ensure you feel an embedded tick.)

🕷 Wear repellent outdoors (Autan is best in the UK) & always tick check carefully when you get home.

🕷 Remember - ticks are tiny. They also like to crawl into crevices in the body where they can hide, like under the arm or in the groin - check EVERYWHERE!

(Image also from US CDC website)

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. 

Lyme awareness: Lyme is...

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:

Lyme symptoms can vary greatly from person to person. It depends on what areas of the body the infection attacks. Rather like when some people get a bad cold they end up with a sore throat, and others may end up with sore ears - we are all unique. This can make it especially difficult for doctors to diagnose, especially when lab tests are not reliable, and even moreso, when they are not done in the small window of time that *may* show an immune response to borrelia infection.

The list above is nowhere close to exhaustive - close to 200 individual symptoms have been linked to Lyme disease (see ILADS.org or lymediseaseuk.com for further details). 

However, imagine the list described, and imagine feeling all of that at once. Add on the worst hangover you can remember, and then imagine you ran a marathon too. You're close, but not quite there.

#LymeDiseaseAwareness

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. 


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Have you found them all?

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Scroll down for the 'reveal'.

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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