Saturday, August 31, 2013


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
    • 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!!

Sunday, August 4, 2013


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!