Rest, don't quit

And the best intentions always seem to be consumed by my body's utterly insatiable need for......... rest.  So January was not filled with blog posts/ positive inspirations/ etc. Honestly, what can I say except sometimes 'sleep happens' (and not always when I need it to happen; so when it comes in waves, I am taking advantage...... sleep heals? Right? - No. Honestly, I don't think so, if sleep healed I would be f***king superwoman by now; but everything else hurts less when I'm unconscious, so sleep still wins).

There was a time I would never have believed writing one thing a day could be too much.... but there's a lot I know now that I would never have believed 'before'. Erm, for example that I actually would learn to rest!

www.pinterest.com/gmun22

 When I am healthy, and fit, and energetic, and strong again (positive mantras); when my perseverance finally prevails -  I don't care that my body is probably going to try to remind me that 'we'* are not in our twenties anymore; I am going to remind it that ALL it did for the majority of my twenties, and so far much of my thirties, was battle with me when I needed to wake up and.... well, do stuff; do anything really - how hard every single physical and mental task is right now.  It* has to make up for lost time.

Therefore when it* is able, when I start bouncing places again, instead of trying to hide a limp and struggle to match the speed of a snail; I will remind my body about all that time we* have to make up for....  I will remind it about aerial yoga, acro-yoga, indoor trampoline parks with foam pits and parkour-trampolining walls..... actually, and parkour, slacklining, 'mainstream' breakdancing..... all of it - I will remind my body that it was just not an option when I first read about it/ watched it and longed to try every single thing -  that when I get my bounce back, I have over a decade to make up for!!  And sometimes, that thought is exactly what I need to keep me going - whether it's battling through one day, or accepting that - yes - 'resting enables healing'.

www.pinterest.com/gmun22

Yes, I have learned how important it is to rest.  I have learned that there are types of pure fatigue and exhaustion that nobody knows how much rest they really need.  That all the rest in the world can't fix 'tired' sometimes.   But because I have learned this; I have also learned I will never, ever take my energy or my health for granted when I get it back.  I have learned I need to rest.  I have also learned never to quit.  Because despite everything - every puzzle, every mystery, every obstacle that I have encountered, I have eventually learned enough to fight it (or sleep through it; cry through it - embracing honesty, remember! And it often feels far more like sleeping and crying dominate. Whatever way.... I have learned I can get through it; whatever that takes).  And one day, I want to look back over this and say I did enough to overcome it.  

And perhaps that is the greatest lesson having both a chronic illness and a chronic injury with severe chronic pain has taught me - never to quit.... and within that, never to give up hope.  One day, when I am back with the right people to help me and support me, I will win; we will win (there are more people than me invested in this journey - for them I am very grateful; but I need them.... and that's another post).  I will embrace my dreams, goals, and feel like I can take on the world again. One day.

I feel this truly expresses how it feels to fight Lyme
  and a chronic injury (/chronic pain).
I look forward to the day where I look at a fresh challenge and can smile.
( pinterest.com/gmun22 )
(It easily covers each individually! So double fight = double reward?! Please universe....?!)

"The danger is not that we aim too high and we miss it, but that we aim too low and we reach it."

- Michelangelo -

*Geek Moment:

*'we' - so the linguistic geek inside me finds this pretty fascinating..... it is very normal for someone with a chronic illness or injury to see it as something that is not a part of them and to talk about it either in the third person (N.B. This is not the same as just generally referring to yourself in the third person.  In some cases, it's batshit crazy.) or as something belonging to them: 'my shoulder was not happy today'.  It sounds a bit crazy, and when I became aware I had been doing it quite a lot (slightly questioning my sanity); I stumbled across an article on chronic pain that talked about it a bit (and said it was totally normal, not a little bit crazy!) I think it would definitely make a cool topic for a thesis (I declared 'geek' as a heading here, therefore 'cool' and 'thesis' can totally be used in the same sentence).

I've noticed other people facing severe health issues do the same thing too.  I just thought I'd clear up the use of 'we' as I do it quite a lot and I don't want anyone to think I've developed a second personality along with everything else.....  Personally, although I haven't really researched it much, the idea of separating yourself from an injury or illness, by not seeing it as a part of you, makes a lot of sense to me.  It's not the person I want to be, or how I want to be defined, but it does feel like a massive part of me, something that is permanently attached right now, so I do have to acknowledge it.  I think it's probably even more common in 'short-term chronic illnesses' - i.e. I fully intend to recover.  I do know that I may not ever get to 100% again, but I know I will improve way beyond where I am now with the right medical support and treatment. So right now, it is a part of me, and right now, I feel it defines me in some ways....... or defines the life I live (or don't live) right now.  It is a part of me; but not quite.  It makes perfect sense to me that it is psychologically healthy to see it as something you are living with, yet also battling; something you have to figure out a way to coexist, while also planning its ultimate demise, and your ultimate victory!

(If this explanation  has just made something you hadn't even noticed even more complicated.... #sorrynotsorry - it's good to exercise the brain! ;-)

The stars make me dream...

I know nothing with any certainty, 

but the sight of the stars makes me dream.

- Van Gogh - 

Courage

www.pinterest.com/gmun22

Invisible illnesses?

So..... first blog post in a while. Not the first time I've written that sentence. I'll get around to filling in the blanks, but for now I'm going to focus on the reason I started this blog (before the universe decided to try to prove I may have been a psychotic serial killer in a past life.  Hell, maybe I have a dozen past lives and I was a psychotic serial killer in them all...)  For now though, exhibit one:  LYME DISEASE.

As the name of my blog suggest, I did indeed start writing a personal blog with the intention of focusing lots on Lyme disease information and awareness.  And for anyone who has missed my Facebook or Instagram posting, or indeed the (wonderful) increased media coverage, May is global Lyme Disease awareness month.  I'll just stress that point:

 MAY IS LYME DISEASE AWARENESS MONTH!

Just to be clear. And I will get to that.  This may be my first post in a while, but if there is anything that I will battle my stressed, fatigued, and pain-addled brain to write about, it's Lyme disease awareness. (Yeah, 2016... not off to a good start.  A story for another day.)  There is LOTS going on in the world of Lyme disease this May. That means lots to talk about.

Today, I want to focus on something that began my own journey into the world of Lyme disease - my initial (mis)diagnosis of chronic fatigue syndrome.  You can read more about that in this post here: But you don't look sick or by reading My Lyme Story at the top of the page (part 2, well overdue).  

This past Thursday (12th May) was CFS/ME AWARENESS DAY (& now Fibromyalgia is included - there are so many similarities; cross diagnoses).

One key similarity is all 'diagnoses' fall into the category of invisible illnesses.  We are not obviously marked by what is wrong with us; and in many cases, our illnesses are not constant.  We have good days and bad days and sometimes, it is as confusing to us as to anyone else.  

Depression...... & all other 'invisible' illnesses
pinterest.com/gmun22

Except we can feel it.  And on the bad days, staring into a mirror with heavy eyes, grey skin and a strong idea of what we might look like when we are 90 (if we make it that long), it is like a stranger staring back at us.  We do not recognise that face in the mirror.  But we know we hate it.

pinterest.com/gmun22

 Norwegian CFS awareness group - Facebook page: 'Creating my Freedom: ME'd' created a wonderful short film for increasing awareness of CFS/ ME.  They use images of sufferers on good days and bad days, positioned side by side, showing that, in fact, maybe this 'invisible illness' is not quite as invisible as it seems.  People respond well to visual information.  For the most part, we understand the world by what we can see.  This is a powerful visual representation of how we present ourselves to the world, versus how we look on our bad days.


Please watch this short film, made by Josephine Rausand (from their Facebook page Creating my Freedom).  The only way I seem to be able to share the video is my OWN FACEBOOK POST - please click to view.  I will add a video if one becomes available.   

Here are a selection of stills from the video (but please, take the <4minutes to watch; the stills do not do the video justice:

                                                                                                                                                                                                                                                                                                                           
The comparisons show that 'invisible' illnesses are not really invisible; they appear invisible because we hide away. 

We hide away our weakest, most vulnerable view of ourselves. That person who stares back from the mirror bearing only a slight resemblance to the image in our heads. We do not hide away out of a vanity, or anything close. There is a need to shut the world out to protect ourselves; an instinct to cocoon ourselves, as sick animals do; it is a way to survive when we see no other way, and we have no medical support. It is self-preservation at its most raw. 

This shows it is not invisible. The few people who ever see us on our bad days are horrified,  shocked, surprised - usually they see us with our masks on.

pinterest.com/gmun22

And I am no exception. I hate having my photograph taken when I 'look ill' - but I have taken a few deliberately, planning to write something like this at some point..... 

Invisible illness?

Hopefully the reach of social media can help dispel the myth of invisible illness and increase understanding. It is not truly invisible, but sometimes, as with most severe illnesses, bed and rest are not even options, they are essential - what has been labelled invisible is more accurately described as hidden. 

"Learn from yesterday, live for today, hope for tomorrow." 

 - Einstein - 

"I know how the flowers felt"

Empty Red Shoes: Increasing Awareness of Lyme & Invisible Illnesses

In memory of Australian Lyme patient, Theda Myint, the Worldwide Lyme Borreliosis Association (more info can be read via the link) held the second international 'Red Shoe Day' on 25th July 2014 (spanning multiple dates to accommodate global time differences)*.  Their goal is to create an annual day of remembrance for people who have lost their lives to Lyme Disease and other invisible illnesses.  The Facebook page created for the event listed almost 1000 people as 'attending' and invited people from all around the world to post photographs of them wearing red shoes to the page - of which there are now hundreds.

*Edit: 2014 was not the second international red shoe day, but the second time red shoes were worn to commemorate Theda - her friends decided to wear red shoes to celebrate her life on the day they said goodbye to her.  This year is the first year it went global.  


Reading Theda's story - and all stories about those who have lost their battle with Lyme disease - evokes an overwhelming emotional reaction in me.  I don't think there is a single time I have read about a stranger, someone I never knew, who has suffered and died from Lyme Disease, or CFS/ME (Theda's original diagnosis, and also mine) and not cried.  There is never a time when I haven't thought: that could have been me.  Because it could have been. 


And: that should have been prevented.  Because it could have been.


This reaction is why most people with any kind of invisible illness want to increase awareness and foster understanding as much as we want (a) cure(s).  Many people are unaware that Lyme Disease, for example, can be fatal.  Raising awareness means more people can get early treatment, fewer people will die from an infection that CAN (in most cases) be easily treated in its early stages.  And stories like Theda's will disappear.


If it had been me, I would be very proud of my family and friends if they started a worldwide movement to support others.  Her friends chose red shoes (not 'Lyme' green ones) because they were her favourite colour of shoe.  They also feel red shoes can be all-encompassing, representing all invisible illnesses.

I wore my own red shoes on Friday and hopefully next year anyone reading this will wear red shoes too.

(Actually, lacking in red shoes, I got creative this year)

I want to share a beautifully poignant photograph posted to the Red Shoe Day Facebook page.  It perfectly illustrates exactly what Red Shoe Day is about.


I wrote about it here on the GoLymeGreen blog: Empty Red Shoes :

Photograph by Marianne Verheyen

While this is not a painting, it is most definitely a work of art, and I feel this quote is both sad and beautiful, like the photograph.  They seem to go perfectly together, as well as reflecting life lived with chronic illness.

I never paint dreams or nightmares, I paint my own reality

~ Frida Kahlo

Lyme Awareness Protests

From: http://lymegreen2014.blogspot.co.uk/2014/05/lyme-awareness-protests.html


This weekend will see awareness protests around the world with the aim of increasing awareness of Lyme disease and gaining proper treatment for patients and updated information, based on current research for doctors, other health professionals, and patients.


Details, pictures, and media coverage from all the protests can be found on the Worldwide Lyme Protest facebook page.


In the UK, Friday saw a Lyme awareness protest in Manchester; Saturday will see a protest outside the Department of Health in London.


See the Lyme Disease UK facebook page for coverage of both events.


If you're in London and looking for something to do tomorrow - join in the protest; take the place of someone who wishes to be there but is too ill to attend because treatment is not available....

If you can't do that, show your support by supporting the GoLymeGreen campaign - wear green, turn your profiles pictures green and share awareness about Lyme!


Your help could save someone's life.

Be the change you wish to see in the world

~ Gandhi