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 - 

Zen and the art of colouring

It has been a while since I've blogged.  There are various reasons for that, right now I'm just going to leave it at 'this year's not been an easy one'. I'm sure I will get around to filling in the gaps at some point.


But, it's a new month, and I have been thinking about my neglected blog; so hopefully it will be a successful and productive month; and I am hoping my blog - and writing - will help me get through it because it feels like anything that helps is worth it....... I am sure I'll get into that later too.

https://www.pinterest.com/gmun22/inspiration-for-recovery/

Recently I have been embracing 'mindfulness' in a big way - there are lots of different specifics claiming to teach mindfulness, or to help achieve mindfulness, but for me it is about recognising where you are and what you feel in that moment, identifying that, accepting it, dealing with it, and then allowing yourself to move on.

https://www.pinterest.com/gmun22/pain/

This specifically describes a very traditional method of mindfulness, but the key point is identifying how you
feel in the moment and finding what works for you  For me, that's not simply sitting and breathing, since
emptying my mind - although the ultimate meditation - just doesn't work!

https://www.pinterest.com/gmun22/just-me-my-thoughts/

Writing has always done that for me - it's always been an escape.  Art (as in drawing, painting etc.) has played a big part in it too - but since hurting my shoulder 4 years ago, art has still felt like more of a chore - an exercise in determination rather than relaxation...... sometimes worth it, sometimes not; but definitely something I still love to do when I can.

But over the past few months I have found the 'adult colouring book craze' to be the perfect compromise between my (limited) body and mind.  I honestly think it is the first time I have found something that allows me to relax and to switch off since I stopped being able to exercise - a decade ago.  I'm not creating the art, so it's actually more relaxing than drawing; I can get into 'position' - pillows positioned perfectly, both arms supported, my neck supported by my neck pillow, my pens/ pencils/ paintbrushes right next to me; sometimes I have Netflix or music (or um, noise, I've also become a fan of binaural and isochronic beats for pain/ sleep/ relaxation/ energy - not that I've found that one very useful.....); sometimes I am just thinking about colours - I can feel my subconscious ticking away, as always, my thoughts just flowing through my head, but they are not my focus.  I am lost in colours and designs and I feel relaxed.  Anyone who knows me knows that's not exactly my strong point.  My attempts at meditation are pretty much summarised in this old post: Meditation Failure.  All attempts: past, present, probably future - all of them!  So finding my zen in a colouring book is a pretty significant achievement!

https://www.pinterest.com/gmun22/inspiration-for-recovery/

And just as an extra bonus, my shoulder surgeon, hand surgeon, physios and doctors all approve - I am rebuilding neuromuscular connections so it's actual therapy on all fronts! (I've definitely stopped dropping things as much with my right hand....... not completely, although I haven't involuntarily thrown anything for a while); I'm getting better at staying inside the lines with my right hand(!); my left hand seems to be better at that - I am not sure if I am benefiting from improving my ambidexterity and exercising both hemispheres of my brain; or if I am just confusing left and right even more; but either way, it's pretty relaxing, yet beneficial rehab for both sides - I can just swap hands when one side gets a bit tired............ I've even managed to colour with both hands at once! That goes back to a bit more concentration and not as much relaxation though....

Oh, and I am absolutely recommending 'colouring books for mindfulness' to everyone I know for everything and anything!

                                    

                   

                      

Just a few examples

The secret of life is in art

~ Oscar Wilde  ~

t minus 22 days

My actual appointments with my surgeon and specialist physio are on Feb 23rd.  So the countdown is on.

Today, I had a hot shower to warm my aching (burning, searing, tingling, piercing, throbbing, pulsating, fasciculating, miserable, spasming, angry, fiery) muscles today; then I did my exercises; then I climbed onto my bed with ice packs and a heated blanket and when my Dad appeared to ask something, I told him I was never moving again.  Ever.)

Until I go to physio tomorrow, possibly under duress.

Feeling like I'm off to a great start...

“Nothing is permanent.”

~ Buddha ~

LISTEN!!

I read an article towards the end of last year that suggested a number of things you could do every day/week to "make yourself a better person in 5 years".  I'm not exactly sure how measurable that is, or exactly how "better person" might be defined (ha, perhaps I understood experiment design and statistics classes a little better than I thought), but some of the suggestions seemed like good little 'challenges' to focus on.  

One of them was to have a computer-free day a week (technically think it was 'tech free', but I'm focusing on the computer/ internet part of that - phones allowed) so I decided to have 'tech free Tuesday'.  I'd like to say I was very disciplined and that's the reason I didn't write my blog on Tuesday night for Wednesday's post, but in all honesty, this news junkie checked BBC news on her phone, then checked two weather websites (that was life-threatening news, a valid excuse - we were experiencing a POLAR VORTEX, and yes, it was 5-layers-of-clothes-FREEZING like I have never felt before), I did read my book for a while and I did not put my computer on all day, but the real reason for no blog (because I really intended to write it after midnight, as I usually do) was because I fell asleep.  In fact, I think on Tuesday, I was awake for 3 hours total. It wasn't too hard not to put my computer on this week...

And there was a reason, so today's tea bag tag I think is a deliberate reminder:

"Listen and you develop intuition"

I was still pretty sore on Monday after my whatever-happened-at-the-weekend pain, but my shoulder capsule was so tight and giving me extra pain.  My physio did some extra stretching - always carefully and gently and with me in control - and then did some soft tissue work to try and free up the capsule a bit and ease the pain.  Lesson not learned.  The soft tissue kneading was sore, but I knew he really wasn't doing it very hard, and although it hurt a bit more than when at rest, it felt like the kind of sports-massage-sore that hurts a bit at the time and then the next day feels so much better..... so that's what I thought.  It didn't.  Actually, I came home from physio on Monday and I fell asleep from about 6pm-11pm - very unusual, and almost always a reaction to severe pain..... also, not really conducive for a normal night's sleep, so then, as expected, I was awake until about 4am.

I will blame that partly on my 'nap' (how long before it's not really a nap?  Can you have a 5 hour nap?), partly on my pain, and partly on the howling gales of an arctic storm that felt like it could lift the roof right off the house.  Rather than go downstairs in the dark and switch my ice packs, I actually just sat them outside on the windowsill for an hour, then brought them back in frozen again.  I think I found the one benefit of the cold weather.  It's nearly over though, tomorrow it has to "warm up pleasantly" - according to the weatherman - to a balmy 33 degrees fahrenheit.  That's 1 degree celcius - 1 degree above freezing. And, yes, it really is "warming up" - that will make it about 20 degrees warmer than it was on Monday, and with no winds - the wind chill made it feel about 10 degrees colder.  Anyway, I did lie awake and listen to the storm for a while, but I did go back to sleep.  I woke up at some point around midday and I always know the pain is bad when it drags me into consciousness; when I am aware of it before I am really aware of no longer being asleep.  Given the weather, I just took my tablets and went back to sleep.  I think I woke up again about 3pm.  Dragged myself out of bed - so sore I was limping on my bad side.... nothing like an injury to remind you how everything's connected.

I had some food, read my book, reminded myself of how much I love Jasper Fforde - and since I'm talking about words, I think I will need to pick a few of my favourite lines from this book and give them their own blogpost, the author's play on words is so clever and entertaining - but by 6pm I was asleep again (NOT a reflection on the book! I love the book!).  Woke up for long enough to get ice packs and make some tea and I was asleep AGAIN before midnight.  Which doesn't make for very exciting reading or writing.... 

So I think the lesson I did NOT learn earlier this week has to be repeated - LISTEN!! My body is screaming at me again.

Especially when a part of it feels like this:  

........................I actually wish my battery was charged that much!  

So the take-home lesson of the week is:

I think that's true!

Butterfly dreams

This wasn't even planned.... today I put a tea bag into my favourite mug and it was like insta-blog:

I actually feel I could leave it at that - one picture worth a thousand words, but most people who know me will know I am more of a 'why use one word when ten will do' kind of person.

I first learned of the quote on the mug a few years ago, after my diagnosis of Lyme disease -  actually almost 6 years ago now.  Not long after that, my Dad's job took us from Florida to Pennsylvania where everyone knows what Lyme is, I found the best doctor in the world (I stand by that claim - in all possible ways)  and began my treatment.  The idea of a caterpillar thinking its life is over and then becoming a butterfly fit perfectly.  Perhaps things didn't exactly follow the expected path from there, but it's still an optimistic quote worth holding onto - something beautiful can come out of even the lowest points in life - but we have to work for them (just like the caterpillar builds its cocoon!).

Having dream on my teabag today seemed perfectly fitting.  It goes with the aspirations of finally becoming a butterfly (just to draw out the metaphor as much as I possibly can), but it reminds me that it's the most important thing to do.  Dreams, hope - it's what keeps people going.

I've had several doctors and therapists tell me that my shoulder will never be normal again. (Some more bluntly than others.)  I appreciate their honesty - they genuinely don't know, because they've never dealt with this combination before, so I would much rather they are honest than pretend they know all the answers.  (The ones who did that caused me far more harm, way back in the early stages.) Nobody knows how much use I'll get back in my right shoulder/arm/hand; or how much (or if) my pain will improve and how long that could take.  They have different guesses, but the conversations usually go something like this:

Dr: I'm sure if you get back 70% function you can live a normal life and you'll be happy with that
Me: But if I can work hard and get to 70%, surely I can just work hard for longer and get something better....?
Dr: Well.........
Me: *staring expectantly*
Dr: Sometimes it happens...... *trails off*

(Just for some perspective: my last evaluation, I was at 20% function - it took me 12 months to go from 15% to 20%.  I should have that evaluation done again this month. I think I've improved, but the last couple of times I've answered the questions, I feel better for the first 4 questions - yes, I can now turn on a tap 'with difficulty' and put on sunglasses 'with difficulty' instead of not at all... YES!!, I think, finally I'm not just circling 'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'......... then it moves on 'can you sleep on your affected side?'; 'can you reach up to the middle of your back/ undo your bra with your affected arm?'; 'can you reach a shelf at shoulder height with a straight arm?'; ' can you put a gallon of milk on a shelf at shoulder height with a straight arm?'; 'can you play tennis?' etc. etc. and it's back to  'I can't do this'' 'I can't do this'' 'I can't do this'; 'I can't do this'; 'I can't do this'............ I have to have improved a LITTLE....)

I learned in November 2012, after it took me 9 months to re-learn how to shrug my shoulder that I had done something none of my doctors knew whether to expect or not.  They didn't know if the neuromuscular connections were going to re-form after such a long period of detachment, and all the atrophy that goes with that.  But I worked damn hard on those shoulder shrugs, and as far as I am concerned, I can work damn hard on everything else too.... when I'm allowed...

I don't have unrealistic expectations (well..... maybe saying I know they're (slightly) unrealistic would be more accurate.... I do have expectations, I know they might not happen); I know if I do achieve certain things, it will be against the odds, and it will take a lot of hard work - and it won't happen any time soon.   I know that I can't even do the hard work until the nerves heal, which is estimated at 2(ish) years.  But it doesn't mean I will stop dreaming and stop trying and stop hoping as I do the tiny exercises I can do just now - which I think I am getting better at....

Definitely improving on my first attempts.... several weeks ago, my Scottish physio tried to get me to do a new exercise.  He demonstrated - stood in front of my, barely hunched over and swung his arms in a rhythm, into the middle, out to the side, crossing them in the middle, across the body. Ok, easy.  He went behind me to watch my scapular movement as I did the exercise.  I tried reeeeeeeeeeeeeeeeeeeeeeeaaaallllllllllyyyy hard to make my right arm swing.  Nothing. (This still surprises me.)  He walked in front of me again, showed me the exercise again. Ok, yup, I know.  Walked around me again to watch my scapulae. Go.  I tried.  Nothing.  The left one was just swinging kind of oddly, as my brain attempted to make the right one mimic it, but I obviously hadn't tried that since my surgery. 'New' movement: doesn't work. My brain couldn't make my arm do the movement - this is the weirdest feeling ever, I really struggle to describe it.  My physio, a powerful motivator and someone who will work you with an appropriate mix of compassion + professional coach (/ slave driver in my athletic past - he is way too nice to me these days!) stood in front of me again.  "What exactly is the problem here?" he asked.  I showed him my pitiful attempt to swing my arm (which incidentally was also pretty sore and kind of felt like my hanging, disconnected arm might just drop to the ground out of its socket if my skin wasn't there... although my pride was hurting more I think).  I don't think he knew whether to laugh or feel sorry for me. (He chuckled, halfheartedly - I think if there's such a thing as a sympathetic chuckle, that's what I got.)

He stood in front of me told me to stand up straight and mirror him.  Eventually, my arm got a bit of rhythm - albeit a little awkward.   Now hunch slightly, is that more painful? Yes, but I'm ok (as the room filled with white sparkles - I can ignore them, it's the black sparkles that mean STOP... generally physios and doctors disagree, but it works for me - I have to move SOMETHING).  Again, he stood in front of me and I watched him as I swung my arms, still awkwardly, but at least moving this time.  He went behind me and looked at my scapula. "Useless," he said, "it's not moving."

Awesome.

And back to the quote, with a final 'new' exercise, also a few weeks ago. Standing very close to, and facing the door with my palms against the door at a comfortable height (around level with my chest), shoulder width apart, he told me to move up and down in tiny movements - a couple of centimetres, no more.  He stood behind me, watching my scapulae. Try it with wider arms. Same.  Smaller movements. Arms back closer together. Wider again. Tiny movements. Make them smaller.  Arms together.  Arms wider.... "What exactly are you thinking about right now?" he asked me. "I'm imagining I'm a butterfly, my left scapula is a wing and my right one's trying to do the same thing," I spat out, frustrated and exasperated. "Good," he said, "keep thinking like that."

Backtrack: September, a busy month...

I'm really not entirely sure how it's November already. I think possibly because I slept a lot of October away - and now with the dark nights, frosty days and Scottish winter looming, I am absolutely wishing I could hibernate for the next few months!

As planned, (eventually) I made it back to Scotland for the beginning of September.  September was just a crazy-busy month - planning and hosting my sister's surprise hen weekend (the weekend after I got back), my sister's wedding, lots of catching up with friends and family, including some who had travelled internationally to be at the wedding........ AND then moving house at the end of the month - the day before my Mum's birthday this year (and despite my best intentions and attempts to not stress my parents out - especially after planning and hosting a wedding! -  with another house move, and my (slightly idiotic/ delusional) insistence I would to do it myself after they left, it was pretty apparent that wasn't going to work, so I was extremely grateful for ALL their help).

I think that could be considered a busy, stressful, tiring month for anyone, so I definitely crash-landed back home. I'll leave the health talk for another post.

Overall, September was a month full of celebrations and they do say a picture is worth a thousand words... So, to save about 22,000 words, here are 22 photos!

Hen Party

Jill's surprise 'Hollywood Hen Party" at the wonderful Crieff Hydro Hotel

*          *          *          *          *

Wedding

The Munro-Milligan wedding, at The Vu (near Edinburgh)

In a very kind gesture by my sister and her new husband, in lieu of favours at their wedding, they chose to make a donation to a UK Lyme Disease charity - personally I think it's a wonderful idea, generally, to consider a donation to a charity for that purpose, and it was very touching that they chose to donate to a Lyme charity because of my journey. Thanks :-)

“Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”

       ~  Buddha

August

I'm a little behind here, so going for a few summaries to update my life. This was written at the end of August.... 

Well.... so much for attempting to post every day.  Rather like the month of August, that feels like a failed attempt.  In fact, if anyone creates time travel in the next few hours, I would very much like to go back to the beginning of the month please....

Given my complete inability to summarise, I am still going to attempt it.

• August was supposed to be 'packing and organising' month
• Organising really involved making sure I saw all my doctors and was up-to-date with everything prior to leaving for Scotland
• This started off ok.....
• 
  
• 5th August:
• I had my "dynamic neuromusculoskeletal ultrasound scan"
• This needs more discussion ... for another time, it was a very cool, new way of looking at what is going on in my muscles/ nerves/ soft tissue as my arm moves
• Basically, my nerves are covered in scar tissue; being compressed with movement and swelling (hence the numb/ burning hand) and it showed signs of lots of damage to all the tissue - nerves/ muscles/ ligaments/ tendons/ fascia etc. in the area
• This visually confirmed the diagnoses of Thoracic Outlet Syndrome and Brachial Plexopathy
• Upshot is:
• Nothing will heal until nerves heal
• Nerves need time, rest (and patience) as they heal at a rate of 2mm (yes, millimetres) every 4-6 weeks
• I still have a long recovery ahead of me; doctor estimates 2-3 years until my arm is "functional"
• Good news is:
• I do not have an inexplicable pain syndrome and can stop researching ketamine comas now
• My pain has been 'visualised' - I SAW it; and saw it compared to the other side; it IS real pain, with a REAL physical cause and can now be very specifically pinpointed
• Bad news is:
• Nobody knows if my right arm/ shoulder will get better, will gain full function again, or to what degree; nobody knows what my pain will do, if/when it will improve, or by how much
• I am not the most patient person..... give me a hundred exercises to do every day and I can happily (even through those tears) work on that; give me some simple, gentle stretches to do "only on good days" and I'm not so good with that... (Doctor: "when you were training at gymnastics and you had a tough night in the gym, you were sore afterwards, you'd have a day off the next day, right?" Me:"..... ummmmm, I know what the answer to this question should be....")
• Plan/ Advice:
• Adjust lifestyle accordingly
• Healing is the most important thing
• Try meditation (I'm still trying.....!)
• Use pillow part of sling so that weight of arm is not pulling on nerves
• Exercise, but do not raise pain level in doing so - e.g. if the pain is always a 5/10, do not push things and spike to a 6 or an 8
• Use various modalities to try to stretch out all the scar tissue that is 'binding me down'
• Drink lots of (good) green tea.... super super super anti-oxidants, apparently.  I think I actually like it now. I even made citrus infused iced green tea - this actually tasted a lot nicer than I thought it would!
• Success(ish):
• 'Swimming' in a heated therapy pool
• I can (kind of) do this.  It gets me the best exercise I have found, as there is no weight from my upper body.  I can doggy paddle and float on my back..... baby steps.
• I CAN however, somersault underwater - that was the most fun I'd had in AGES!!
• Steam room - heat helps break up scar tissue with gentle stretching
• 
  
• 6th August :
• Just as we were about to leave for another of my appointments Mum fell downstairs... 4 days before she was due to fly home to Scotland
• DRAMATICALLY
• She slipped on the 3 bottom wooden steps, kind of arched her back as she fell, so hit lower back then shoulder and in that split second where you watch to see if someone is going to get up, or not, she started crying out
• This was not good
• I was home alone with her and really felt I was not much help (physically) - I couldn't help her off the stairs, but did manage to get ice, pillows to support her and call a friend, my Dad, and then when things were definitely not improving, 911
• EMTs and Paramedics (I guess from Kimberton Fire Company and then associated with Phoenixville hospital) were fantastic
• She did go to hospital strapped to a backboard, with neck-brace on, in the ambulance
• Diagnosis: Badly bruised ribs (told this is not really different from strain/ sprain/ fracture and had to delay her flight in case microscopic fragments of bone came loose with the change in air pressure
• She was in agony, in bed with strong painkillers for a few days, but started physiotherapy very quickly with a lower back specialist.
• I am pleased to say that she has made a REMARKABLE recovery - still has some twinges and spasms, and has to be careful with how she sits and things like that, but she will definitely be dancing at my sister's wedding next month!
• 
  
• Same day, I had my appointment at Penn with the specialist physio I see; very kindly, our friend took me (she was such a wonderful help)
• He was very interested in the new scan, the paper that Dr F has written (first paper on diagnosing Thoracic Outlet Syndrome with visual confirmation - published in May) and showed me his notes from my first appointment with him where he had written "brachial plexopathy".  I never doubted he was right - but nobody had the tests to prove it.
• My shoulder function is now at 20% of a 'normal' shoulder.  That's 5 points increase in 11 months.  12 points increase is significant.  He is not happy - frustrated that it is not going faster (not frustrated at me), but I am trying (very very hard) to focus on the fact that is is at least heading in the right direction..... S-L-O-W as it is.

August kind of split into 3 parts:

• Before Mum's fall - trying to get things organised (where her biggest concern was how many pairs of shoes to pack)
• After Mum's fall - where things kind of stopped, time seemed to freeze for a few days,  Dad had to take time off and try and help, and I tried to do more, but had had a week full of sore appointments, so I was pretty sore and tired, so not very helpful, really.  At one point my Dad was going to make tea, I said I could do it, I was going to get some too....  "And how do you plan to carry two tea cups upstairs?" Ummmmm....
• Then, After Mum Left although, to be honest, I could also call this After My 'Incident'...

Mum left on 17th - a week made a huge difference to her, so we were all delighted to see her improve so quickly.  And very relieved.  It did, of course, bring up many strange comparisons between what I did - a simple slip, gradual building pain and causing so much damage; and what she did - seeming instantaneously horrific, but getting better relatively quickly. I genuinely was just delighted to see her make good progress so quickly - it was quite a scary thing to watch, and to deal with as well.

With Mum away, and Dad working, I have to drive myself to my physio appointments etc. now. I've been driving for a couple of months, I have adapted so that I am doing it with pillows supporting me, and... well, my physio did say "people with one arm can drive, you should be driving" - so ok from the physios, doctor and insurance company (and passed my mum's little driving test!) and I'm ok with short journeys - in an automatic (i.e. no gearstick to drive with).

My 'Incident'

The Monday after Mum left, I was driving to physio and my back started to spasm, with the pain travelling from under my scapula around my ribs. Uncontrollable, squealing out loud in the car-type pain.  I really don't know how I got to physio; it was a very conscious "not long now", "breathe... count your breaths..." - I was probably talking to myself.  I made it to the clinic, collapsed on the front desk and was helped through to a private room, given some ultrasound with my medication, and laid on ice and TENS for a good hour... maybe two hours.  When I was numb enough, the pain was under control, and I felt ready, they let me drive home.  Looking back, it all seems a blur.  I know I was there, I know I couldn't stop sobbing, I had no idea what was happening, but it was agony.  The next few days saw packing completely abandoned, and I was back in bed with my ice machine... no packing and organising happening as planned...

I saw my orthopaedic doctor here a couple of days later and he has diagosed a strained muscle in my ribs. Great.  He was actually more excited about the movement in my scapula(!) - having not seen me since he took out my staples.  Even although he said it is completely abnormal and movement may never be normal, he was amazed to see it actually moving at all.  I guess I am so immersed in this now, that I forget how new and amazing this really is.  The muscle pull could have happened any way - Dr said people can do it sneezing, or coughing, but it is throwing the rest of my ribs out (not that they needed another thing to help them dislocate themselves...).  So my right rib cage is in entirely the wrong position - and seems to be moving more each day - , scar tissue seems to be breaking up a bit because of it, and it kind of feels like I have a back-brace on, inside me,back to front.... my flight home has been changed to Sunday 31st now, and I am planning just to take all my painkillers and hope I sleep!

And............ in between all that, I have been attempting to pack my life into 3 bags and decide what I really need - HOW have I accumulated all this stuff?!  Let's just saw it's a slow process..... pack for 20 minutes... ice for 20 minutes.... lie down a bit longer... wait on drugs to work.... pack for 20 minutes..... 

And really, that's been August!  Think this says it all.....

Very busy.... trying very hard!!

Insomnia

Well, it's been a while.  Not because I haven't had anything to say, but because when I start writing, I really don't know where to start and when to stop with everything that has been going on lately.

August is my last month in the USA, and a difficult time in many ways as I know some pretty big challenges and changes lie ahead; so I am going to try to blog more, daily if I can manage it, to update things, help me focus on the positives, and to help me keep things a bit more organised inside my head...

However, as usual, it is 3.17 am, I am not asleep and it is this time when it feels like my brain comes alive.  I have  journal called "I can't sleep" (It's from this company HERE.) 

(Inside the journal the copyright states that "brief quotations embodied in critical articles and reviews" can be used without pre-obtained permission; so I intend this to be considered a review and critical article that discusses the journal, journaling, and insomnia.)

This is the journal:

Personally, I think it is fantastic.  My mum got me it for my birthday.  It is also filled with famous quotes (and now many of my own thoughts) from famous writers, philosophers, world leaders and others, many relating to sleep.... or rather, the lack of it.

Tonight I have picked my very favourite quote, from Dostoyevsky: "To be too conscious is an illness - a real thoroughgoing illness." I think I might take that page to my doctor.... I am definitely "too conscious"!

One of my favourite Scottish authors,  Alexander McCall Smith, often writes on his own facebook page. He gets up in the middle of the night to write, then goes back to bed when the sun comes up. This made me think about him:

"You never have to change anything you got up in the middle of the night to write." - Saul Bellow, a nobel-prize winning novelist.

Personally, I love this next one, as it conjures up ideas in my mind of all these thoughts simply floating about, looking for a conscious mind in which to enter and be realised: "Nighttime is the best time to work.  All the ideas are there to be yours because everyone else is asleep." - Catherine O'Hara

Att the beginning of the journal, there is some information about insomnia and it says "we sleep only when we need to and are awake when we're most productive."  Well, I sure as hell am not productive during the day!  So I'll definitely take being productive in the middle of the night.... it has to happen at some time - right?!  And lying in my bed writing definitely counts!

It also goes on to say that Marcel Proust and William Shakespeare wrote when they couldn't sleep and that Winston Churchill, Benjamin Franklin and Napoleon Bonaparte were famous for "conducting their affairs in a sleep-deprived state." I have also read in various places that Margaret Thatcher never slept for more than 5 hours when she was prime minister of the UK.  

As my insomnia as plagued me over the past few years, I have read more about it and discovered the world of chronobiology - the study of sleep and circadian rhythms which currently holds that we all operate on our own body's natural cycle - some of us are naturally night owls, some are larks (morning people); some of us may have a 24 hour cycle, but others may have a cycle that veers entirely away from what we, culturally, consider to be 'normal'.  Another 'listen to your body' piece of advice.  Funny how that makes so much sense in every context...

It also says "journaling" is highly beneficial and claims studies have proven that "physical benefits include stress management, strengthened immune systems, fewer doctor visits and improvement in chronic illnesses such as asthma..."

I wonder if blogging counts as a form of journaling... I do both, and have kept a journal or a diary since I was a child.  The intro also says journaling, "forces us to transform the ruminations cluttering our minds into coherent stories..."   Not only do I love the idea, but it's such a beautiful and eloquent way of wording it.  Plus 'ruminations' is definitely one of my favourite words.

It goes on to further explore the idea that writing your thoughts in a journal when you can't sleep "can be seen as a way of organizing the conscious stuff floating around your brain..."

Personally, I quite like the part that says insomnia "could just mean you are smarter than the blithely snoozing masses and have more to say than they do"!  I doubt anyone would disagree that I talk way too much!  It also goes on to say that apparently "studies have found that night owls are, in fact, more intelligent and have better memories than early risers."  

Perhaps this is just to make all the readers feel better about their lack of sleep... But perhaps I should not complain about my insomnia and embrace my enhanced creativity and capture all those ideas that seem to appear out of the darkness - in all honesty, the only reason it bothers me is because everyone else seems to operate on a different schedule!

I often tell people (really, I mean doctors) I don't have a problem actually sleeping, it's more the falling asleep and waking up (at a specified time) that cause me problems.  Sleeping when my body wants to sleep is very peaceful!  However, having given up my sleeping tablets, as my tolerance increased and they were not working as they should have; forcing sleep is close to impossible, and so as daylight appears and the birds start to sing, I usually begin to feel sleepy... ear plugs and an eye mask a necessity.

And now, as the cicadas have gone quiet and the birds are beginning to sing, I will quote the last quote in the book and hope sleep is soon forthcoming: "... and so to bed." - Samuel Pepys.

Good night!