Thursday, May 31, 2018

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. 

Tuesday, May 29, 2018

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 or 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.


Wednesday, May 23, 2018

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.
A few awareness points for 2018...

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


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.


-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:


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: 


Friday, May 18, 2018

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.


Monday, May 14, 2018

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! 


Saturday, May 5, 2018

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

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.


Wednesday, February 28, 2018

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.