Saturday, February 25, 2017

'An empty desk'

 Just something I was thinking about lately...

~ Einstein ~
From Google Images

From Google Images

Wednesday, February 22, 2017

#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. πŸ˜€

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! πŸ‘πŸΈπŸ˜†)

 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! πŸ˜‚.... 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! πŸ‘πŸ’ͺ*'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! πŸ˜‰ ) 

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!

Sunday, February 5, 2017

Pain relief arsenal...

So far, I feel this year can be summed up by the fact that this photo is pretty much my current "what would you take to a desert island?" answer.  

Pain relief arsenal.
It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...

I had a few violent 'pain attacks' lately and - sticking with my personal resolution to be more honest - I really feel pain is winning right now. So, here are the weapons in my pain arsenal - most of them go everywhere I go right now.  Find your pain, pick your poison. I present....

My Pain Arsenal:

  1. Tablet organiser case (guess I'm missing the hot pink version!) with a mini 8-compartment tub in it for sorting daily pain meds (no Lyme meds or supplements - this is just the pain box :-/ ). Right now I have 40-50 tablets I take every day in that - types of painkillers; multiple muscle relaxants & anti-spasmodic meds; a couple of different anti-nauseas (I respond to severe pain with nausea..... sometimes I throw up. And that hurts like hell. So I have some serious anti-emetics in there); plus some 'extra-just-in-case' tablets for when Really Bad Things happen (I'll write a 'Really Bad Things' post... maybe a few... little snapshots of my whole 'honesty and pain' thing.... that will be something happy and cheerful to look forward to...)

    N.B. *
    I really should put emojis on my laptop!* Is it really bad I miss them when I type on here?! ( *facepalm*... *ha ha*... ;-) ...)

          From the photo: going anti-clockwise here...

  2. Radian B, my favourite version of deep heat/ icy-hot/ ralgex/ etc. because it also has the perfect amount of capsaicin in it: 0.01%. More than this will make you forget your pain entirely, because you feel like your body is covered in FIRE; 0.01% is just enough to beat all the other heat rubs out there. It puts heat into the muscles; also helps with pain by slightly scrambling the nerve signals sent to the brain. I really love the smell of muscle rubs.... they smell like my Dad used to smell when he came home from work when I was very young (when he'd see a physio after a game); they also smell like gymnastics - the scent of my childhood: muscle rubs for sports injuries!

  3. TENS unit: 'transcutaneous electrical nerve stimulation' (sounds like another torture device, right?!) Actually, at certain times, this thing really is like magic. There are some pains that it doesn't do great with - specific nerve pains can feel like they are just buzzing more; but for some otherwise-untouchable pain, the TENS unit works wonders. It sends little electrical impulses between the electrode pads that can be stuck on the skin, carefully positioned to target specific pain areas. It has different settings- buzzing, tapping, contracting, cycling through them (my 'surprise setting') - and can be set at different levels of intensity. Essentially it 'scrambles' the sensations sensory nerves send back to the brain, scrambling the pain signals by confusing' them with other sensations.

  4. Pink spiky physio ball of torture (not a dog toy). Rub painfully between your aching shoulder blade and a wall to improve circulation, blood flow, break up scar tissue, etc. For more 'fun', have someone else (who can actually reach your back better anyway) rub it to 'desensitise' high pain areas and super sensitive skin, and to break up tightness in muscles.  Generally - roll it anywhere it hurts to improve blood flow and use it to torture yourself in the hope i does some good!

  5. Pink spiky foam roller - this was deceptively packaged........ it is not in the slightest bit 'squishy' - I thought the bumps would be good for clicking the subluxating ribs back into my spine - and it is good for that. But bloody hell, a regular foam roller doesn't hurt! However, it's good for the crazy popping ribs, the assisted movement exercises & adds some unplanned desensitisation stuff just by lying on it!  Which, with increasing pain, I have to admit is a good thing - although sort of in the way broccoli is a good thing when you're 8 - you really don't like it, but 1. it's good for you, and 2. dessert's only an option if you eat it!

    Pain relief arsenal.
    It's not magic, but it currently makes pain barely tolerable & it (accidentally!) matches...

  6. Prescription pain cream - a wonderful combo of topical local anaesthetic, muscle relaxant and anti-spasmodic medication.  Made better by mixing with Radian B (& missing from the photo is a genius find - a very soft-bristled, long-handled back brush that I can use to apply the creams and rub them in thoroughly - if the pain cream is properly rubbed in, it's supposed to penetrate up to 5mm into/ below the skin & be absorbed better.  It's pretty hard to do that, so if you're reading this and use a pain cream, a soft bristled brush may be your favourite new thing for a while!

  7.  ICE pack -  they are all resting on top of a giant ICE pack here, wrapped in the grey pillowcase. A perfect metaphor -  ICE is absolutely the foundation of it all.... still!  Sometimes ICE is absolutely still my favourite thing!  There was a time ICE brought; the only respite from the pain; and I do miss that damn ICE  machine, mainly because it's hard to ICE a shoulder - it's a funny, awkward shape and that shoulder pack hit all the right spots perfectly!  ICE  sometimes really is still the best pain relief, especially when my shoulder is irritated and inflamed and and numbing/ reducing swelling is the BEST thing that works - especially with frequently random irritation and swelling which can be pretty horrid if it presses on nerves (um, or more accurately just goes from its normal gentle press to a full blown, limb-numbing nerve squeeze).

  8. Hot water bottles (not pictured; but I have 3) - I'm probably holding one against my ribs in attempt to keep the muscles relaxed enough to breathe properly (because that's always good!)...... my right rib cage no longer expands properly, making breathing difficult at times. I think it should improve, but stretching right now causes further spasming; my attempts are pretty pathetic - I need the passive stretching from hands-on physiotherapy while my muscles can 'relax'.

    *I think the tight rib muscles got a lot worse after my car accident.... which I'm not sure I've mentioned on here....?  I guess that's another one to add to my list of 'Update how UNBELIEVABLE my last 18 months have been'.
    And I mean unbelievable in the sense that I am quite sure if I just sat down and rattled off everything that has happened to me in the past 18 months (/ 26 months / 6 and a half years / twelve years - really, take your pick! ) to someone who does not know me/ has never met me before, they 100% would NOT believe me.

Pinterest even had a perfect graph to represent exactly how every day feels
- and it matches too!
Seriously though, it really does get beyond frustrating.
So many things I wish I could do that just don't happen just now.

Wednesday, January 18, 2017

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!

 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'.

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.
( )
(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! ;-)

Tuesday, January 10, 2017

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 πŸ˜”). 

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 πŸ˜‰!!) 

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:

Thursday, December 8, 2016

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 frinds of my shoulder,  as I was noy 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

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