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 😔). 

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:

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 ~

Friday, July 15, 2016

A bit more serious...

Thinking more about chronic pain, because....... well, one, I opened that door and it's definitely something that deserves some attention and awareness; and two, because I HAVE IT!! Along with hundreds of thousands of people; around the world, probably millions of people.  Ususally I would actually go to Google and then cross reference a few searches to see if I can get a rough percentage, but I'll just stick with the 'I've read in multiple places it's a problem for millions of people' (You can fact check me if you wish!)

Drawing attention to chronic pain is an important issue.  Many people are living with some form of chronic pain, and will do so for the rest of their lives.  For some, pain is constant, for others it comes and goes.  If my treatment goes to plan, mine should improve massively, as the function of my shoulder improves, but it is unlikely I will ever be pain free.  However, if my pain drops below a level where I have to take crazy concoctions of strong medications and I get myself back where I can live a normal life, I will take that as a win.

I think it's important to draw attention to this quote, from a seminar/ conference (/can't quite remember which) on pain, last year, this was said:

I really think that last sentence is worth highlighting:

"We believe chronic pain is a disease in its own right."

I admit that I had absolutely no idea of the extent to which pain can affect the entire body. And it does - pain makes you tired, you ache, you struggle to concentrate on conversaation  as if you have a bad headache (you get them too); your body tries to compensate for the way you move, so other non-injured parts beging to hurt; you have to try to learn to correct that so you don't create further problems; the pain makes you tired, but you're too sore to get comfortable - sleep is broken (shoulder pain is actually one of the most common causes of insomnia) Or it swings entirely the opposite way, I hit a 14 on the scale below, and when I do le down to rest, my body just seems to wipe out.  It's such a strange thing to explain  -  I understand why it's so difficult to understand; but if you have a friend or family member with chronic pain, sometimes reading some of those usually really simple 'about......' articles make useful points.  And, as usual, I'm writing this to try to draw attention to another 'invisible illness' and maybe offer a glimpse into the complex world that is chronic pain ..... 

It is definitely not 'broken wrist, stick it in a cast' kind of pain; this is like saying Lyme disease makes you 'tired' as opposed to 'pathophysiologically fatigued' (the medical term; aalso used wwith ME/CFS/ Fibo and other similar illnesses -  not something a normal sleep helps in any way). Chronic pain and acute pain are not just different sides of a coin, they are completely different currencies.

 And really, as an, um, adventurous kid, I thought I knew it all - acute injuries: broken bones, pulled muscles, head/ neck injuries (gymnastics, flying over bike handles, falling out of trees.... and more - I was active!!); along with 'normal' pain from general minor illness.

 But that's the key word there  'A C U T E'  - chronic pain just isn't comparable.  It's not like having a sore arm/ shoulder/ tooth/ whatever.  It's not something you can compartmentalise.  After you have pain for a certain amount of time (medical definitions vary from 3 to 6 months), it changes the way the brain processes pain.  Sort of.  Because we don't really know that much more about pain.  Generally, the body should heal in that time  -  in my case, for example, I know my muscles were still detached 8 months later (right before they were reattached).  So then I had surgical pain (& the damage that goes with that)..... in an area that had been in severe (undiagnosed and untreated) pain for months.  Knowing what I know now about the actual physical damage as well as what I know about the little we really understand about chronic pain, it is not surprising that I have pain issues - add in my nerve damage, lack of function in my right shoulder; and other things that all came to light (I think it's pretty much covered across 2012- early 2015 on here!) -  my sister's cat could issue a chronic pain diagnosis if it could talk.

A solution on the other hand.....?...... Well, if we don't really understand how chronic pain works, it's pretty obvious to say we don't have a good solution for it. Slap on a fake smile, lipstick, and a pair of sunglasses (or a good mascara) with my meds, and nobody would know...... most of the time...... Bad days are harder to hide, but those also tend to be the days I just hide under my duvet, with little other choice..... this is far more than I ever really admit.

Recent happenings (details for another time, but not so good) have led doctors to offer me further medications and then more medications to mediate the side effects of that extra pain medication.  Right now, I have a drug combo that works the best out of anything I've tried.  It doesn't take the pain away  -  and nothing will.  It lets me cope with it, basically.  But I'm never not in pain.

This leads to a lot of judgment.....often from doctors who make comments like "you really don't want to be taking this many medications at your age....' (umm..... NO, I really don't.....) but after examination, history, and discussion conclude that they could "add more pain medication and give you another drug to help with side effects." So I declined.  The extra drugs won't get rid of my pain, so I'd really rather not add more toxins to my body - only to have the next doctor judge me for the even greater number of meds I take. *sigh*

One thing that gets me with this is the assumption you're 'out of it' with medication.  Most people's experience is after a surgery or following a bad injury - nothing long term; and for most people strong painkillers will make them either loopy or sleepy.  There's about 5% of people who have 'contrary reactions' to meds - guess what group I fall under?!...... Of course.  I have known this since I was 12 though (e.g. valium makes my insomnia worse, instead of knocking me out.  I would much prefer the sleep).  However what is difficult to understand for people is that my pain can make me seem 'out of it' - it has nothing to do with the meds. 

My sister once told me she "could tell when [ I ] had taken all my medication because I as a bit slow to think..."  Actually, she could tell when my pain was bad, because I take the same medication every day, at the same dose in order to try to keep my pain 'even' (rather than it spiking and dropping like a rollercoaster) - it sort of works.  Research has shown that in patients with chronic pain, pain medications act differently in the brain than in people using the drugs recreationally/ to 'get high'.  I know it's a misconception that bothers other people too. 

When people (and usually medical people) comment negatively on my meds, I think about what those meds enable me to do....  It's nothing like what I would like to be doing, but they enable me to get through my physiotherapy sessions.  They enable me to get out the house, have a shower  - basically to not lie crying in agony 24/7 until the pain just knocks me out.  That's where I was before the pain meds ere sort of balanced.  I imagine, sometimes, answering with, "would you ever make a cancer patient feel guilty about chemotherapy, a class of drugs that are known poisons, but the best you can offer?" - Because of course they wouldn't!!  Nobody would!  And the same should apply to all other patients too - those 'evil drugs' are the only things those same doctors can offer; it's all we've got.

 (As an aside  I think I actually HAVE also tried EVERY ''alterative therapy' I can find, and I do take a few supplements in order to actually avoid certain drugs, for specific things.  Laughably, the doctor who has just told me I shouldn't be taking so many prescriptions drugs, but offers me no alternative, then usually tells me the supplements are probably not doing anything.....)

*Arrrrrrrgh!! * Can you hear me scream?!

 So, yes, a little bit more serioius - but if you made it through that, and you know someone who suffers fom chronic pain, maybe you can ask them a little about it; or give them a (gentle!) hug - most people just want to be understood. :-)

Words have no power to impress the mind ithout the exquisite horror of their reality.
- Edgar Allen Poe - 

Monday, July 11, 2016

Positivity in honesty

My goal is positivity, but sometimes one of the best ways to be positive is to be completely honest with yourself and admit there are some days that just can't be dressed up with scented oils and rose petals; or concealer, hotpink lipstick, and sunglasses. There is pain that is untouchable and cannot be moved by any type of painkillers, pain creams, TENS units, pain patches, hot baths with muscle soaks, or even the slightly weird binaural beats that are actually helpful sometimes (and I've read the brain imaging science behind them.... I'm just not 100% sure YouTube and peer reviewed cognitive neuroscience journals have the same standards when it comes to binaural beats.  Although to be honest, if all they do is provide a kind of white noise-neuro-TENS-unit kind of thing, I don't really care.  In that moment.)

Sometimes you just have to wave the white flag, admit any attempt to function today is entirely futile and snuggle up with a dimmed computer screen and Netflix at a volume only dogs should be able to hear. 

The most important thing about these days -  which can be hard when you have been battling an illness for so long..... and especially hard because they often come in clusters.... or clusters of clusters!   For me, that's eleven and a half years of battle.  I've had higher points and I've had lower points - I'm really hoping for an upard climb soon (karma..... that would be really nice please!); but for some people it may be a few months, for others it may be lifelong - we all fight our own battles, and we will never truly understand someone else's battle.  Regardless of that, it's really important to remind yourself of this:

Because, let's be honest, you don't need to have a chronic illness or injury, or to be recovering from a surgery, or to have the flu to declare DUVET DAY. Sometimes we all just need a recharge, for whatever reason.  Personally, I think calling a duvet day after watching the news is a perfectly legitimate reason right now!!

Learn from yesterday,
Live for today,
Hope for tomorrow.
 - Einstein -