November Mindfulness: Nourished

November Mindfulness: Day 2 'Nourished'

Unsurprisingly, I'm playing catch up on day 2.... I took the photos, planned the posts... not sure I have a reasonable excuse for not even uploading a photo!

'Nourished' did make me think a little bit more deeply about what true nourishment means just now. Yes, I eat well (even with the 'good' dark, organic, low sugar chocolate... mostly); I can't drink any alcohol because it would prevent antibiotics from working; I drink loads of water & herbal teas; I take various supplements - some antimicrobial, or ones that work in some way to complement the antimicrobial action of medications/ herbs, and others to boost antioxidants and aid in detoxing my body as it (hopefully) is so exhausted because it's clearing out nasty, twisted (ha ha... Lyme jokes) spirochetes.  But that didn't really feel like it went very deep - it was too literal, so I think this collage better represents how I 'nourish' myself right now.

'Nourished'
#herbaltea #organicchocolate #cactusgarden #breathe #ifyoucandreamityoucandoit #butterlies
#justwhenthecaterpillarthoughttheworldwasoveritbecameabutterfly
#somepursuehappinessotherscreateit #art #myart #arttherapy #flowers #candles

There is tea (green tea, ginger tea, matcha tea, turmeric tea, kava tea, 'breathe deep' tea, 'throat coat' tea, 'bedtime' tea, milk thistle tea, fruity teas, fruity green teas, minty teas.... basically everything except 'real' tea - British and I dislike tea.... I've got the healthy ones though & I think that's what counts here!) - all with the obligatory hipster(hippy?)-but-I-love-it tea bag tags offering a dose of philosophical existentialism a few times a day, and some amazingly tasty coffee-chocolate from our local health food store.... no, my diet's not perfect, but I TRY!!  

More representative of how I 'nourish' (/boost/ motivate/ pick a synonym) myself are all the little things I surround myself with. I like to look around me and feel the little boost I get from these things I've inadvertently collected or created over the years.  I find this in quotes, art, plants (although I fear they might really be struggling for light now the clocks have gone back, unless they can get on board with my personal Lyme-time-zone), books, scented candles, special cards, my piano, (a million) notebooks, paints, pencils, pens, sketchbooks (different from notebooks), colouring books and a variety of my own creations.  Lots of little things that make me smile, make me think, or remind me how much I enjoyed creating them.  Some are clear messages - and perhaps the reason I've sworn at 'cheerful' inanimate objects on the odd occasion; some are things I have spent valuable time and energy (and spoons) creating myself - painting, drawing, planting....  Creativity is truly a form of escapism and is probably where I find mindfulness best.  And even if some objects seem irrationally annoying on bad days, most of the time they serve their purpose and remind me to focus on the positive.

Whatever we plant in our subconscious mind and nourish with repetition and emotion will one day become a reality.

~ Earl Nightingale ~

It's October!

Really, October! I guess most people are well aware of that fact, since it's a very common and normal thing to know...plus shops are full of Halloween 'decor' and pumpkins, for those of us who do need a reminder since I seem to have 3 day weeks (physical therapy) & 4 days sleeping... or close enough! Time seems to just fly past, in one way. Some days do seem reeeeallly long. So it's probably not necessary to remind anyone else, but... my blog, my title, my reminder.... my exclamation mark! My:  'I can't believe I last posted in AUGUST!'

I really thought I would at least manage a blog post a week... then a month.... then, well I guess I slept a lot! (It's healing!)  I have had various ideas - mainly: I should blog with photos, it's easier. So I do have collections of photos from various things we've tried, along with a few stories and I'm aiming to 'catch up' to the end of October... by the end of October 😀.... mainly by organising and posting the assortment of photographs I've been planning to use.   Hopefully afterwards, I will actually manage to take advantage of my good days and engage a bit more !(Although good days are somewhat fewer right now, but I'm hopeful that means we are getting to the deepest parts of spirochaetal infection and pulverising the little Lyme-hell inducing buggers!). 

So, an overview of the past 3 months...

When I arrived here in May, we began 'deconstructing' my body and its somewhat obstinate, definitely obscure, health issues again. We made a plan (by that I mean I had about a dozen medical appointments) and we moved forward ... then we adapted, made a new plan and pushed on with that.... I blogged a few times about what we were doing and... now it's October!!

We kept going... made a plan, pushed on....then we stepped back, puzzled over some stuff, made a new plan and pushed on with that... then.... we remembered why the word plan has never really been the best word dealing with my body and its rollercoaster recovery. We 'decided' (like it was a choice) to go with my gut - which has been pretty damn good in this whole saga; it's so important to remember to listen to your body and trust your instincts when it's your body that you can feel.... screaming at you!

So right now, and for the past several weeks, physical therapy has been purely working with 'how I feel today'. There is no doubt that the ongoing IV Lyme treatment has systemic effects - it's going directly into my blood to target infection at the deepest possible level, and spirochetes can affect the entire body, especially when left to run (spiral/ drill) riot, unchecked throughout the entire body AGAIN - of course it's affecting everything!  


But my PT can "feel a difference" in all my muscles  (good side included) on weeks that the Lyme treatment affects me more (it goes in cycles). That wasn't really something I had thought about, but it's a HUGE validation of something usually only I can feel - most importantly,  it means it's working (torturously!).

So, I have continued to infuse Lyme medication every day, as part of my protocol (I have oral meds and some herbs & supplements too); I have continued to go to PT three times a week - sometimes I make it into the gym-area, mainly for some lower body strength training; other times I hardly move from the treatment bed while knots and spasms are worked out of my muscles; and dislocated ribs and twisted bones are eased back into place. (Yeah, that's fun.)

And so I continue on this path for now - things are so much better than at the beginning of the year - unbelievably so! - but they still have a long way to go. We have positive and encouraging signs that things are working. And I have complete trust in my 'team' of medical professionals here,  who offer such fantastic support - even after all this time.

The photos are more interesting, I promise. And coming soon....!

Lyme brain, 'pain scan'

As the saying goes, 'a picture is worth a thousand words' & this one didn't just make me think of that phrase; this picture felt like it jumped out of my screen: the perfect embodiment of the 'monster attacking my head'; its tangible horror captured in perfect detail. It was like staring at an image of my own, physical, pain.

For 12 years and 5 months now, I have suffered from almost constant headaches, something very common in Lyme disease, probably one of the most ubiquitous symptoms (many symptoms vary, especially with chronic Lyme disease - it adds to the difficulty in diagnosis when doctors are not familiar with it, and the patient doesn't recall a tick bite) - headaches are - I think I can say - universally experienced, and despised.  I have had good spells, where the headaches have dulled; but the worst, completely debilitating  headaches come when I feel the little spirichaetal buggers have rebuilt their army, regrouped, devised a new strategy, and start waging an aggressive full-on attack on my body again. When my headaches are at their worst, I have long describe them in these very words:

"It feels like giant hands are inside my skull, squeezing my brain, from the base of my skull, wrapping up and round."

So when I was scrolling through instagram this image, posted by a Lyme awareness group grabbed my attention:

(From 'inourshoesproject' instagram page)

Maybe it seems silly to feel so... connected, horrified, surprised... stunned?... at one image. But looking at this says so many things to me:

- That's my head!!
- I could have drawn that
- If you could photograph my pain, that captures every.single.detail.
- ... MY head!!!

...

But overwhelmingly, it says:
SOMEONE UNDERSTANDS... like really really 'gets it'.

I am incredibly sorry that someone does - and not just someone - I'm not sure where the image originated, it seems to have been shared on various Lyme sufferers' social media accounts.  If scans could show pain - that is a Lyme brain, in perfect detail.

 It is very common with Lyme, as with other 'invisible illnesses' that friends and family struggle to understand how ill a person is - often people 'don't look sick' and others have difficulty matching appearance with 'behaviour' (/symptoms) - to simplify.  We are taught to trust what we see, and we have difficulty when there is a disconnect there.

Images like this one, I hope, help people to understand a bit more, by providing a visual depiction of pain. We know that we cannot see every illness, but we understand the severity of some 'invisible' illnesses. There are still illnesses - and Lyme disease is one of many - where genuine awareness is still required, and increasing understanding can help with support, and be a positive factor in many ways.  


'Invisible' can be hard for me (& others) too. Nobody wants to 'look ill'; but everyone - healthy or ill; on a life high point, or facing major challenges - wants to be understood.... and it can be difficult when people rely on what they see over what a friend or family member may try to describe.

The best thing anyone can do for a friend - whatever they are dealing with -  is just to try to accept that only they feel it, and the best thing you can offer is your support. In some cases, it is appreciated more than you'd ever imagine. 


 May has been Lyme disease awareness month and my blog has been rather neglected - with good reasons. Cutting a very long story short, for now, in May I travelled back to the US, for treatment for a pretty major Lyme relapse; and also for critical treatment for my shoulder - treatment I still can't get at home due to the complexity of the injury, the new surgery, the lack of specific 'scapular physiotherapist(s)' & also the absolute impossibility of finding someone who knows about Lyme AND crazy shoulder injuries - and just as impossible, finding a team!

So April was spend getting stuff organised at home - hard right now, my health has really nosedived. May has been spent seeing all my doctors and therapists here, and making a plan.  Right now, it just feels so damn good to HAVE a plan!

Hopefully I'm 'launching'!

It is always possible to be kind...

Invisible Illness: Be Kind!

I'm finding just now, through various channels, something is constantly coming to my attention. Two words really: INVISIBLE ILLNESS. It's something that we seem to accept, as a concept; as a definition - but WHY? - why are we 'invisible'? Because we're not really - we're everywhere.

Do you know someone with arthritis, or rheumatoid arthritis? With any kind of medical fatigue? With early stages of MS? With Fibromyalgia? ME? Someone elderly - perhaps not with a specific illness, but who has slowed a bit with age and is frustrated with their own slowness?  Or with heart issues - heart failure; angina, post heart attack? ... There are many examples connected with the heart that slow people down....

It may be a chronic pain or injury - pain in a knee, ankle, hip - a necessary slow walk; or something acute, but not requiring crutches.   Acute things tend to pass us by a lot - we are 'inconvenienced'; we temporarily may pass comment on how hard it is, to deal with; or how we "can't imagine how people can live like this"  - I've heard those words, many times, from countless people.  And, in that moment, people mean it; they have a glimpse into a world they do not usually inhabit.  But only a passing visit - and as with most pain, our mind forgets it easily and quickly.  The lesson seems to be fleeting too. By the time 'one' is in a hurry again, the acute injury, and all that came with it, is long forgotten.

There are also many people struggling with all kinds of mental health issues, permanently, who may take 'too long' to decide on something seemingly simple; struggling, for whatever reason, to reach a decision - perhaps thinking fast is not an option for them; perhaps we cannot possibly begin to imagine how a brain different from our own works - but we don't really need to imagine, we just need to accept.  It is very possible to encounter someone with an acute version of that, perhaps someone with a migraine; or someone who has had devastating news and is so overwhelmed with emotion, they cannot focus their mind on an inane decision such as what type of coffee to order; or something equally trivial.

Then there are people undergoing all kinds of treatment - chemo is obviously one that jumps to mind, sometimes visible, sometimes not - and there are many others too....... treatments, and even the stress associated with them, that slow people down, make it hard to walk, to think, to pull a heavy door, to pack shopping away quickly; even to make a decision.

 Obviously I am thinking about Lyme Disease especially - but having my shoulder injury and the associated chronic pain has shown me even more of a world that quite honestly is NOT invisible. I think we have to move away from the idea of INVISIBLE ILLNESS.  Opening our eyes, both physically and metaphorically, to the point of observation doesn't just teach us to look a bit deeper; it brings a kinder society - people giving the benefit of the doubt; people choosing to help instead of hurry. Surely, in this world we find ourselves in just now, aiming to be kind may be the best thing to do?

From Pinterest

I personally am moving away from the idea of 'invisible illnesses' -  I don't think there is such a thing.  I think there are (consciously) 'hidden' or ignored illnesses (I'm using 'illness'; thinking about Lyme - but my thoughts are applicable to an illness, a condition, a syndrome, anything really - to PEOPLE; not everything is, or has to be labelled).  I think, at our worst, we hide away from the world anyway, almost instinctively - not necessarily through choice, but in the way anyone will 'hide' in bed with the 'flu - several days un-showered, with ratty hair and 'moulded to your body' PJs is not a look anyone really wants to share with the world*!

*However, if you answer your door in PJs in the middle of the afternoon, there is a 'look' - usually a quick flash that may in some cases be inquisitive, but most often says, undeniably: it's 3pm, you have PYJAMAS on. I have learned that throwing a blanket over your shoulders changes this entirely - my own little experiment. People apologise, they "hope they didn't wake you/ get you out of bed/ etc." - just a blanket draped over your shoulders. It's so simple, yet so telling. (Yes, I've still got my geek on...... nonverbal communication, it's always there!)

But ultimately, I'm writing this because I'm beginning to truly hate the word INVISIBLE ILLNESS. It's not invisible. It's often hidden away, but it is also always out there, somewhere.
 
If you truly keep their eyes open - and sometimes your heart - up the empathy! You will see people all around us who may need that little bit more help, a few minutes more patience - people for whom that loud and exasperated *sigh* really says "we can all see that you're slow; we can all see that you are holding everyone up; you're annoying people everywhere you go."
People may not mean to convey such hurtful messages in a sigh - they are perhaps running late, desperate for coffee, on their way to a meeting.  Or in some cases, with a glare and a sigh, they may be first class arses who should pop their own bubble a bit, look outside their comfort zone, and realise kindness never killed anyone! 

#TBT Happy Memories

A happy memory, something nice to write about. Something that brought genuine smiles to my face the other day. So I figured that definitely deserved a blog post. 😀

I have a lot going on again, health-wise - with my utterly f*kced -up shoulder; a worsening Lyme relapse; add a pinch of stress, a shake of trauma; mix together in the year from hell (not exaggerating) and simmer indefinitely at boiling point, and I feel that adequately describes my life right now - as briefly as possible. That's all for another day. 

I'm painting a picture of just how delighted I was to have something truly make me smile.  It's a stark contrast right now, and it was an important reminder that remembering the good stuff is truly important.

I do feel like I'm battling through each day, rarely emerging on top, and the longer that goes on, the more difficult it becomes to find positives.  Honestly, it's beyond frustrating - there is nothing I wouldn't do or try, right now, to make things better... and I have; I have tried everything you can imagine, and more. And worse than frustrating, is the soul-crushing feeling of admitting  (even to myself) this 'new thing'/ 'new person' / 'new whatever' - that initially held such optimistic promise and gave me a glimmer of hope, is not 'The Thing' I am looking for.  It's like treading water - kicking so hard all the time, but never actually getting anywhere.  Right now, the challenge is to keep kicking; to keep my chin above water long enough to  survive. And hopefully I can take control again soon and get back to seeing my wonderful doctors & physios in the US, who helped me make great progress before - I am sure I can work hard and make it happen again - and most importantly, get on with my life.

But, appreciating the small things just now;  I woke up a few days ago and my ex-gymnastics partner had posted a #tbt on social media that really made me smile....

Colette on base, me in the middle, Amy (always!) on top
*
Colette kicked it off by writing: #tbt to holding two humans up with my own two legs....

So, of course, i dug out out one of my own photos to post too.... and captioned it 'to when I could hold up two humans too... on my shoulders' - which probably won't be happening again. Definitely not any time soon. Although one day..... who knows?!  

Me on base, Colette in the middle & Amy on top.

It's a long time since I really really looked at those photos and took the time to think about what we did; how much I loved it. Comments on social media reminded me how funny I always found it when non-gymnasts learned what I did. It was just something I grew up with - it was normal,  in my world. I remember once, in training, the balance in the second photo came tumbling down and the full weight of a 10 year old landed on my head (think: approximately 1.5 times the weight of a checked bag for an international flight)... while I was in splits. There was the usual call to my parents - I'm ok, but please pick me up from A&E instead of the gym tonight - a soft neck collar from my physio for some damaged muscles/ tendons/bruised bones; and probably a couple of days off uni. None of that was a huge deal - you really couldn't learn new things without the odd fall.  But the thing I remember most about that was going into uni with a neck collar on ('normal' people react to those things way more than gymnasts - lesson 1); someone asked what happened, so I very briefly explained. The girl who asked stared back at me... "You can do the splits?!" she replied, sort of incredulously.  I remember staring back, feeling like I'd been dropped in an alternate universe. At the time, we were the only trio in Britain competing that base position with no hands (- my hands are not on the floor); all I could think was I can do the splits..... that's what you got from that?!... practically everyone I know can do the splits. .. But, of course I sort of smiled and nodded, and had umpteen similar conversations through that first year of university!

Growing up, friends knew me as a gymnast, it was so much a part of my identity. When I started uni, and conversations like that happened; I had to realise my little world was a little different sometimes. ( But doing the splits in a bar always ended with free drinks! 👍🍸😆)

 So I guess it was nice to slip into that world again, through those photos. It's so easy just to close my eyes and imagine I'm still there. 

 My old gym partner and I had a conversation about it, reflecting on that time and thinking about how in sync we were ALL the time - how we all took it for granted, but it really is quite incredible when you really think about it.... and there was always such a natural feeling to it - we didn't have to work hard at being in sync (we had to work damn hard at everything else!!); we were just in tune with each other. I think with all those years to reflect, it is a pretty amazing thing! (But really, being able to do the splits  STILL impresses people more! 😂.... trying to maintain my core strength & leg strength is important... therefore exercise = stretching. I could do splits with a sling* on my arm! *Not the crazy, giant post-surgical one.... I could hardly move anything at that point - couldn't even put on socks! However, arm supported & I can (sort of*) still do the splits now! 👍💪*'sort of' - as in: if you're a gymnast, my hips are twisted, my back knee is twisted and I'm really not sitting up straight, or comfortably; if you're not a gymnast, I can totally still do the splits! 😉 ) 

We trained together ALL the time, but we just loved it. We both talked about how much looking at the old photos really made us smile. They are absolutely fantastic memories to have - and to share.

 We worked together so many hours every week, completely trusting each other - really with our lives (the risk of serious injury is high!! See the photos?! ⬆ - and, like I said, they did come tumbling down occasionally! Everyone's  did!!), but in among all that, I don't have a single memory of fighting, or falling out - we just loved what we did.

Given my blog is generally medical, and this x-ray might be the coolest thing ever, this seems a good place for it! (From Pinterest)

Most of this blog documents my 'journey' 'out of the Lyme light'  -  (and in, out, in, out, slip downstairs, have surgeries, somersault in my car... turn it all about....)  that wasn't exactly my intention - obviously!  - my intention was to spread awareness of Lyme in the UK (again, uodates there require a whole load of other posts....); but it unintentionally became my personal blog as well as an awareness blog - about way more than Lyme Disease. It is very much about what's going on in my life right now... and I can't wait until I have something more exciting and interesting (in a GOOD way!) to write about. 

But for right now, in this moment, it's nice to have something else to think about and write about; and to remember what was genuinely one of the happiest moments in my life - I loved competing. We loved competing. I do feel lucky that I can look back on these photos and conjure up so many happy memories - they spark so many gymnastics-related memories, and they all make me smile. 

Not 25 years yet (!) But I'm sure we'll still feel the same in that far, far distant future :-)

And it DEFINITELY came into play, I guess...

Along with this - yes, gymnastics 100% taught me ALL of these things; it's also a good reminder that these are most definitely transferable skills.

And when my dad complains I am being stubborn (I get it from both sides, it really shouldn't surprise him), I tell him that's how I've SURVIVED!!

And honestly, now I really don't know if I'll ever be able to handstand again or not... I'm pretty sure I won't ever stop hoping & then hopefully trying - at some point, because being upside down always feels best! However, I definitely want one of these tops... because: once a gymnast, always a gymnast!

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! ;-)

Catch up: Dementors, resolutions & good wishes for 2017

OK, it's 10 days into January, so I might be pushing it a bit with Happy New Year wishes, but in my defence:

1.   I  ('we' really, but I'm writing) have had the winter cold/bug/virus/ that escaped from Azkaban & has held my family tightly in the icy grasp of a Dementor's kiss for about a month now..... a couple of us were better at conjuring up a Patronus  (aka immune system response) than others & given I already battle multiple Dementors on a daily basis, I couldn't even tell you what form my Patronus assumes (although I'm pretty sure there's no stag or doe 😔). 

I may have been wrongly sorted.

I might need a new notebook if I don't improve.

Or Google might have the answer....

I shouldn't really need to add to that. I think 'Dementor's kiss disease' should be the ultimate excuse; but I do genuinely have other reasons:


2.  Through the brain fog, the darkness, and the Dementors' kisses of horror, I did remember my 'personal resolution' (not so much a new year one, more of a personal aim ) is to blog more again. It can be cathartic, it often serves as a good way to sort of 'talk to myself positively' & search for positive quotes and images which do exactly as they are supposed to, and instill further positivity & motivation. It's a great habit to get into, but it's easy to get sucked out of it  (this metaphor totally works!) when things get tough.... which brings me to my true personal aim: to try to be more honest - both with myself and with other people, regarding my health, and capabilities (or lack of them, it often seems right now). 

Last year was an incredibly tough year, and I did withdraw from the world a bit. Not exactly on purpose, more in a subconscious act of self-preservation; but I'm going to try really hard to move on from that  (or spill it all out of my head, perhaps) and truly hope this year is a better one for my family,  many friends who seem to have had a really shitty year too.... and the world, which seems to have been just as badly affected. I am determined to put 2016 behind me & to hope for good things for the world this year too, as so much uncertainty looms ...

 ... So I have been writing. Honest!!  They're just all 'drafts' right now that need to be finished & edited before I can hit that orange 'Publish' button! So this post explains why my next few are going slightly backwards in time first - then I'll get on to that whole 'new year, new motivation' thing...

Not sure where my 'Dementor's cold' came from,
but this may evolve into a massive 'Lyme metaphor' - it's perfectly fitting.
I just need to Expecto Patronus enough to find that borrelia-immune Bambi.

(Maybe it will work against political leaders too.... or free up the Dementors to get them...hmm.
I think I may need a wand more than nail polish 😉!!) 

3. It's the 10th. That is 2.74% of the year (really, I just checked). I've been asleep for AT LEAST 50% of that time, maybe more (honesty!) 1% of the year hardly counts . ... SO....

 Happy New Year!

Paintings, my own (c)gfm

Or as it was yelled in our house,

 "F*€k off 2016... may 2017 be much better!"

(Actually wasn't me yelling,  I just thought it too!)

Lets's start with an old favourite:

"Life isn't about waiting for the storm to pass, 

it's about learning to dance in the rain."

~ Vivian Greene ~

And one that is perfectly fitting in every way:

2016: Lost for words

Lost for words
[Originally written on my phone & full of typos *shock*. Edited early 2017, with additional content.]

Yes! You read it properly (twice, just to be clear)! I have not been very good at blogging this year - specifically for 16 months, really, because life became so jumbled up & messy, I genuinely couldn't (can't) find the words to describe it all.

Anyone who knows me personally, or who has followed my blog may be having some doubts right now... I am not one to be stuck for words. Ever.  And I'm not a fan of being stuck for words - so this ends now!  For once I am making a 'real' new year's resolution to focus on my writing (blogging included obviously; but all my writing projects); and art projects in 2017 - a year of creativity.  Art heals, right?!

However, as December is quickly passing by, and a new year approaches, I feel this urge to try to 'get it all out' - out of my head, free to float around in cyberspace instead of in my own mind - so I can move forward and approach 2017 with a sense of optimism and hope.

To 'get what all out'? My subconscious asks me - all that stuff you just said you have no words for? Well.... yes. I haven't figured out how that will work: if the words need to be written, or if I can simply THINK stuff out of my head. Either way,  I'm trying. Perhaps simply starting to write will draw it out of me, either tangibly (or maybe through some sort of intangible higher-consciousness superpower that writing, blogging and thinking can combine and combust when I try to put certain memories into words.... it's a cool idea - what a great way to eliminate trauma, or negativity... okay, I think I've watched too much Black Mirror.  I do know that's not really going to happen - it's been a hard year, but I've not totally lost it; my imagination remains happily, crazily intact though!)  Moving on.....  in the real world outside my head.... perhaps I will find the words; or perhaps writing about different things will provide a release anyway.  Really, I just need to clear some space in my head for positive thoughts for next year. I don't exactly know how (did you guess?!).... I'm just diving in anyway.

This particular blog post started on instagram, in a blurb about a painting I posted. I have been attempting a 'challenge': 100 days of creativity.  I  did it last year, and it was great ambidextrous therapy, following right shoulder and left wrist surgeries, so - with the same underlying physical reasons, and the whole art therapy idea, i started it again in April this year, but things just continue to overwhelm me.

January 2017 will mark 12 years of severe chronic illness (& injury) for me. Out of 12 years, i can honestly say this year has been the worst. It should have been a year where improvements continued; instead, improvements seem to have crumbled, despite my best efforts to continue building on them; my Lyme-related issues have firmly nosedived into major relapses; and my strength and emotional well-being seems to have been tested at every point. It has been a TOUGH year, and it remains difficult to delve into every detail.


I gave up on this art  challenge after spending quite a bit of time in hospital in the summer, and even longer being 'iller' than usual between my stays in hospital. It's just one point that leaves me stuck for words, because after about 3 months of feeling severely ill (on top of my 'normal feeling like sh!t), a total of 21 nights spent in hospital, over multiple admissions;
 I have no answers. Symptoms have somewhat calmed down, but flare up sporadically.  I still feel ill again; 'it' has not been fixed, 'it' has not gone away, but I have given up on  answers for now.

I later I decided to finish this art challenge. It might seem silly, but it has come to represent something bigger; it may be my only 'accomplishment' this year (although survival probably surpasses it!). So I have 22 days and 28 pieces to post 😞.... but in a silly way, it represents my year. So I WILL finish! & if I can squeeze that in, hopefully in some crazy way it will help me leave 2016 behind & move on to 2017 looking forward. 

There is a large part of this that I feel mirrors 2016 globally too and hopefully the world can move on in a positive way too. Hopefully instead of divisiveness that dominated 2016, humanity can come together & support one another. Hopefully 2017 can be a year filled with compassion, love, safety & unity (& good karma!) This safetypin movement -inspired painting seemed the perfect place for trying to start somewhere (again!) with my blog.

Initially I started this blog to raise awareness about Lyme Disease;  it quickly became an unexpected method of communication - somewhere I could upate friends about my shoulder,  as I was not allowed to spend much time online following surgery. Over time it became quite cathartic as well, at times an outlet for a frustrating long recovery, and many times a place for positive quotes to self-motivate.  It has helped me stay positive & optimistic - and enables me to 'meet' other people with shared experiences. 

I very much hope I can get back to writing and continue all of those things in the new year.

Multicolored Safety-pin
#safetypinmovement

"You must be the change you want to see in the world."

~ Gandhi ~

The stars make me dream...

I know nothing with any certainty, 

but the sight of the stars makes me dream.

- Van Gogh -