Optimistic eyes

I've missed a couple of days... partly because I have stuck to my painkillers + energy drinks (+ sheer stubbornness) = ability to do things and go places; and partly because 2 days of that meant I slept all day yesterday.

Today was a beautiful day - the kind of winter's day I really love here: cold, but with a bright blue sky and the sun shining.  Mum and I went out a walk.  Or, as she calls it, at my pace, a stroll (definitely more accurate).  It's the first time I've been out a walk for several months and we did walk slowly, but an estimated ~2 miles in total.  A two mile stroll is a major achievement for me - and focusing on the little achievements (anything that makes us smile!) is important, when life becomes 'step-by-step' or 'day-by-day'.

It wasn't an easy walk for me - and it really was at snail's pace, with some rests and pauses - but the fresh air felt really good.  We did a circuit around our neighbourhood, and then continued and did another one across the main road, and back home.  It's amazing how natural it is for our bodies to adapt in ways we don't even think about.... until we can't do it - only then do we realise how much of an effort we make, entirely unconsciously, walking up and down little slopes or hills.  I know walking uphill (I'm talking a slight incline here - nothing major) is hard, and I know it requires rests because it makes breathing more painful and my 'stuck' rib cage attempts to expand further so my lung can expand, and it can't.  I know to stop, take some breaths (sometimes hunched over) and then I can go on - but it is much more reassuring to walk with someone beside me, just in case.  I hate saying that, but unfortunately, right now, it's very true. (Even more unfortunately, also justified.)

However, today I learned that going down a steep hill is harder than going up one! (Even a tiny, short one, it's the incline that tortures!)  It came to one of those points where my brain knew what to do, and my body didn't.  If these didn't hurt so much, they would be almost funny... describing them is quite difficult.  I've tried to explain it by suggesting to someone: imagine doing a somersault (I was speaking to someone who couldn't somersault) -  you know the motion, the movement and the shape, but you can't just do a somersault.  A better example would actually be to imagine what it feels like to do a somersault underwater (everyone's done that, right?  Is it only me who thinks that's incredibly normal...?) - you can't hurt yourself underwater, it's fun, easy, and anyone can try it - but you can't just transfer that to a gym (or a park) even if you know what it feels like.  It's not the best example, but it's the closest I've come to feeling like the person I'm talking to might, possibly, be able to imagine what I mean...  Except that I'm talking about something really simple - walking down a hill - which shouldn't really be comparable to a learned skill like a somersault.  But it is.  As strange as it sounds - and it felt stranger! - my body didn't know how to walk down a hill.

Everyone knows when you have an injury, often another part of your body compensates for a while until the injury heals.  Quite often, we're not really aware of it until the other part of the body that's doing more work begins to niggle too.  This was like that, except I was slapped in the face with it - my body's 'compensation attempts' failed miserably.  To go down a hill, we naturally lean backwards to distribute our weight and walk without losing balance.  My muscles don't have the strength to do that (plus it hurts so much that they start to spasm - it's not a case of just sucking it up and dealing with an achy muscle type of pain; it's more of a black-sparkles-dizzy-nauseating-blackness inducing pain).  My brain seemed to be trying all sorts of ways - my right foot on tiptoe (didn't work); twisting my hips (didn't work); various ways of limping (I really never knew there were so many) - I actually stopped and had to think: how can I do this?  Ridiculous! It wasn't a big hill, we were nearly home, so I let the weird twisty-tip-toed-limping movement take over and got to the bottom of the slope as the black sparkling darkness really was descending.  After refusing to take my Mum's arm for the hill, I clutched at her for the last minute until we got across the road and to the front door and I could lie flat on my back on the sofa.

I'm counting that as a win......

http://www.pinterest.com/gmun22/inspirations-for-life/

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!!

The funny side

Today we went out for a few hours. I felt a bit like I'd slept yet another week away (in between my adventures with hair dye... a story for another day!  It's ok, it has a happy ending!)  We had booked dinner at my favourite restaurant, Seasons 52, which has booths and always accommodates my request for a booth so there is space for my pillow!  (I also signed up for a restaurant points system a while ago; booked today because they had 1000 point tables.  2000 points gets you a $20 dining voucher  - if you don't already know about OpenTable - check it out.  Does anyone know if they have a UK version?)

We wandered around the mall for an hour or so before, and after, dinner, just browsing. Really just a change of scenery, little day out.

  On the way home in the car, my TENS machine wires seemed to have moved, and something was painfully pressing into my shoulder blade.  I didn't have the machine on, but I think the electrode connection bit, which is metal had got trapped between a particularly sensitive part of my scapula and the elastic of my (strapless) bra (no shoulder straps = way more comfortable for a sore shoulder… usually).  

Usually, I put the electrodes on before I get dressed, so trying to get them off my back, in the car, with a seatbelt on and a bra, tank top and sweater on top of them was not easy.  I was beginning to sweat with the pain and get that sparkly-dizzy- almost-panicky feeling that comes with the pain increase - I just needed to get rid of the metal bump and I couldn't find it. 

I asked mum to pull over when there was a space off the road.  It seemed like a much longer road than usual…. By the time she had reached a little car park, my seatbelt was off, I had managed to shimmy the strapless bra down to my ankles, and to remove two electrode pads and stick them to the window… having nowhere else to put them.  After she parked I managed to get the other electrodes off, unplug all the wires from the electrode pads and remove the bra from around my ankles.  All without exposing any skin or getting arrested, so all things considered, I suppose that was a success!   

Just another day... might as well see the funny side!