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 - 

Wednesday, July 6, 2016

Life's what you make it...

"It's not about the cards you're dealt, but how you play the hand." 
~ Randy Pausch ~

(I think this is paraphrased from Voltaire, but if you haven't read 'The Last Lecture' by Randy Pausch, it is a truly inspirational, positive book written by Pausch while he battled end-stage pancreatic cancer. He was writing for a lecture series where people renowned in different fields are asked to imagine what they would say if they were truly giving a last lecture. Pausch didn't have to imagine. But instead of writing about suffering; about all the things he was going to miss out on, he spoke of a full life where he achieved many of his dreams. It is a book I would highly recommend. So, sorry Voltaire, this version wins here - it's an incredibly moving piece of writing; its positivity - while still honest - is its true inspiration.)

Tuesday, July 5, 2016


Perseverance.....  it's innate really!
Sometimes we just have to remind ourselves that as we get older.

From instagram


- Winston Churchill - 

Monday, July 4, 2016

Grow positive thoughts

 As I began to recover from Lyme disease, I decided I wanted a project I could work on, something different, something new.  Perhaps it wasn't conscious reasoning at the time, but I think doing something I'd never done before was important.  I couldn't compare the 'before' me to a reduced capability, slow working, inefficient 'new' me (or 'me in progress'.... perhaps). I chose to grow vegetables in containers. I researched, I joined a gardening forum (a PAID subscription forum..... no messing about here; I was going to LEARN & I was going to SUCCEED). 

I'm not sure why exactly I chose container gardening. I considered painting classes, or yoga classes, but I wasn't well enough to make any kind of time commitment,  especially to a course I'd paid for - my health was still very unpredictable (& my wallet not exactly overflowing with spare cash for classes I may or may not have been able to attend) - I needed something I could do at my pace. Container gardening, specifically, removed the physical barriers - I wasn't strong enough to dig, and it let me explore something new. And I discovered I LOVE it! 

THIS is totally true:

Below is an assortment of random photos of growing my own veggies (it quickly went from 'my' garden in the first year to 'our' garden in subsequent years. ... my mum loves it too! And grudgingly, I have to write it is (/she calls it!) her garden now, since I'm not there - but I have got to enjoy it at different stages, for different lengths of time since the year I started it!) 

Initially,  my dad seemed to find the whole thing hilarious, frequently laughing at my excitement when seeds successfully germinated,  and my baby plants began to grow.... then fruit..... Until the next spring when he said, rather hopefully, "so, are you going to grow those tomatoes again....?"

Mostly from year 1 - MY veggies!
But LOOK - we grew a pineapple  (took 2 years)!

Pepper seedlings, baby tomato plants, yellow tomato flower, aubergines (eggplants), baby courgette (zucchini), baby corn plants, cantaloupe melon, accidental zucchini /squash creation, mixed salad leaves, multicoloured carrots, "those [cherry] tomatoes", sugarsnap peas, PURPLE bell peppers, CORN!, PINEAPPLE!, beetroot  (beets) - quite a selection.... & we added more/ tried new things different years. 
SO rewarding, & OK, yes, I got excited! :-)

Research published relatively recently (last few years) that shows microbes in soil might actually affect our human 'microbiome'; and this may contribute to positive mood, and feelings of relaxation and contentment felt while gardening. So it was a GREAT choice of 'new hobby' - all round beneficial.... and those freshly picked veggies and herbs.... just can't beat them!!

"Adopt the pace of nature:
 her secret is patience."
~ Ralph Waldo Emerson ~

Sunday, July 3, 2016


To quote my surgeon, who could not have been more right: 

"when it goes on this long, it becomes as much a mental challenge as a physical one."

...... and that was over three years ago. I hope that finish line comes into sight soon.

"The mind is everything. 
What you think you become."
~ Buddha ~

Saturday, July 2, 2016

Let the light in....

Thought for today....

This makes me imagine people all sealed up, have never 'seen' anything in their lives; living inside a bubble of introverted darkness, never reading about the world, or interacting with others because they are too sealed off and too afraid to open themselves up for fear of getting hurt... of being 'broken' somehow.

Because the world does break us - we get ill, we get hurt - physically and emotionally. ... we make friends, we lose friends, we get our hearts broken,  we settle happily somewhere and then we move on.... everything is always changing, and we always need to adapt; to be constantly flexible... to take risks. And risks can break us too, but they can also be the most wonderful things that happen to us - if we never open ourselves up to risk, we don't really protect ourselves, we limit ourselves completely.  Whatever the result, all these things shape us, without them, we wouldn't develop friendships, fall in love, have adventures.... we wouldnt experience life in all its horror, and most essentially, in all its wonder.

We all have our cracks - challenges, stories, struggles, accomplishments - it's what makes us individual, what forms our personality; leaves indelible marks on our consciousness..... ultimately, it IS the story of our life... we get one chance to write the story, we should make the most of it.

I like this quote because it simplifies something I really feel about life, and particularly about being ill..... it has taught me more than I ever could have imagined. Do I hate it? Of course. But it happened, so I might as well find something positive instead of becoming bitter about it - we should embrace the things that shape us - every single thing we experience.  Look at things positively, learn from them; take it all in, and let it shine out.

*Not mine* - but not sure where I saved it from!

"Anyone who has never failed has never tried anything new."
~ Albert Einstein  ~

Friday, July 1, 2016

July: Positive Affirmations

Today (July 1st), Facebook popped up with a 'memory' of this blogpost: 'Don't look back' - written exactly 4 years ago.

As always, it seems, Facebook has a knack for 'remembering' - & reminding me of - the passage of time with not entirely loved memories. It's hard to believe I wrote this post FOUR years ago; and that I fell FIVE years ago last week (yup, facebook reminded me of that too.....)

 I often think we are so very lucky we cannot see what lies ahead. I was so concerned with my 'lack of progress' in just 3 months; I wonder what that 'past me' would have thought if I had know what the following years would bring? Such an ongoing challenge.... bigger than I could ever have imagined: more surgery, the intense treatments, investigations,  ongoing severe pain, a resurgence of Lyme symptoms - on more than one occasion - the evil bacteria taking advantage of my weakened body.  And on top of 'just' the health issues, an array of other challenges, all indirectly caused because of this damn shoulder....

However, I shared that post again today,  because the message is as true and relevant now as it ever was. Perhaps even moreso in some ways..... 

"Don't look back, you are not going that way."  

It has been a tough journey, and that continues to be the case; often feeling tougher as more time passes. But the world IS still spinning, one day still follows the next, and although it is slower than I ever thought possible, I am still putting one foot in front of the other, and moving forward  (with maybe a few sidesteps included at times..... perhaps more than a few. .... and maybe add some cha-cha in there too!). However, it is most definitely a reminder of a very important life lesson - we have to keep going; to keep moving forward in order to make progress, however slow, and frustrating, it may be.

It's also a reminder I *really* should stop neglecting my blog! So, as I declared on Facebook today,  I am aiming to fill my blog with 'life lessons' posts for July, with a focus on positive philosophies. I certainly could do with searching for positivity just now and reminding myself I CAN DO THIS!!

So I'm going to kickoff my month of positivity by sharing this awesome music video by Rico Franchi, someone I am proud to call a friend because of LYME DISEASE - while I would never have chosen to have Lyme, I have met some amazing people because of it and I am truly grateful we all have each other -boosting each other up; helping each other out; understanding each other, because of (such an awful!) shared experience; and most importantly, working together toards the same goals: awareness, improved treatment, and ultimately: a cure.

Rico's positive affirmation, and the title of his single is

"I'm getting better every day"

It's available on iTunes and 50% of sales will go to Caudwell Lyme, a UK-based Lyme charity.
See Rico's details HERE on the Lyme Disease UK website and BUY his single, the first release from his album Auditory Dreams (fab name, right?!) for just 79p HERE - remember 50% of that goes to support a UK Lyme charity!

Way to start the month with some positivity - an optimistic, motivational song AND a charitable donation! Build that positive karma!

And remember......

"The journey of a thousand miles 
begins with a single step."
- Lao Tzu -