Friday, May 3, 2013

Back on the rollercoaster

Well, after my great progress over the past couple of weeks, last weekend was definitely a low point again - the equivalent of making that slow, anticipatory climb right before the rollercoaster sends you racing back down to earth... twisting, backwards, and upside down.  Hopefully, to soon begin another slow climb...

Last Saturday night I was doing my exercises - as usual - before I went to bed. My sleep patterns are so mixed up right now  and my doctor just says sleep when I can, so I do, with not much other choice - I've even given up on the sleeping tablets at the moment as they are simply not working anymore.  So, I'd had a shower - warmed my muscles up - got ready for bed around midnight and started on the exercises I've been doing for the past couple of weeks.

I worked through my 'easy' ones first, leaving the harder ones until the end - my usual routine; it loosens up my movements and addresses my range-of-motion exercises and then I do my (minimal) strength exercises after that.  During my baby-girly-press-ups I felt a bit of a twinge on the top of my shoulder - not where I usually get pain, so I took a break  (this usually involves me on my knees, pulling my arm in tight to my body, and head on the floor - this is not uncommon) and then decided to give the next exercise a go.  The pain didn't seem to be easing really, but because it wasn't my usual 'hotspots' of pain I tried to work through it a bit.  The next two exercises have me on my hands and knees - gave it one shot and decided that wasn't going to happen either.  It's been a while since I've had to give up on my exercises, and I am always aware of making the decision - trying really hard to decide if it is actually better to push through, or to give up.  And I hate giving up.  It's really not in my nature.  However, my body was beginning to dictate so I grudgingly decided it was the right thing to do.

As the pain was increasing though, the one thought running round my spinning head, as I lay face down on the floor was: I hope I can still move my arm.  I have to check. I have to lift it.  Just to check....  So I thought really hard about it and realised that even my left arm felt like a tonne weight - it is so difficult to describe what pain can do... I would say I've experienced pain in my life - broken ribs, fractured sternum, fractured wrist, fractured thumb (among others - mostly gymnastic-related); but not forgetting the infinite list of Lyme symptoms associated with pain...  But what I have now really should have its own word.  It's like saying you're "tired" when you have Lyme (or anything that causes major medical fatigue... like chronic pain), when what you really mean is "I feel like some vampire-type creature who feeds on energy instead of blood has emptied my body and left me devoid of any iota of energy."  

There's just not really a word for it. "Pain" simply isn't enough.

Still determined to make sure I hadn't done any major damage (aaarrrrgghhhh!!) and could still move my arm I lay on my stomach (where I had pretty much collapsed anyway) and reverted to my previous progression - pushing my arms up with my fingertips - still lifting them; still using the muscles, but with some support.  I struggled, but I managed.  Relieved, I pushed up one more time, just to be sure and then it really HIT me. $%^# !! The pain from the muscles' contractions seared down the lateral (right) side of my scapula and radiated deep into my body between my scapula and my thorax.  The pain was like a stone smashing a pane of glass - it just seemed to splinter instantaneously, and simultaneously, in every direction.  

I lay on the ground, my arm bent and tucked in at my side - my protective position - and waited for the pain to subside.  I'm really not sure how long I lay there; I reckon it was about 20-30 minutes but my pain was not calming down, it was definitely getting worse.  At some point, I realised I needed ice, but given I was lying face down with my eyes closed and the room still spinning; feeling so nauseated I could taste it; and was completely drenched in sweat caused by the pain; I did realise going downstairs was not an option.  I had to wake my parents.

For the first time since the two weeks immediately after my surgery, I woke my parents around 1am.  I half-crawled, half-clutched at the walls, got to their bedroom door and struggled to make my voice loud enough to wake them.

By the time they got to me I was sitting on the wee sofa at the bottom of my bed, holding my arm - it felt like I was holding it so it wouldn't fall off.  By this point, my pain was beyond words.  I was sobbing, sweat was literally dripping down my face and upper body and speaking to explain what had happened was a struggle.

My Dad filled my ice machine and hot water bottle for me and my Mum sat with me trying to get me to control my breathing - seemingly impossible.  She got me the meds that would help, applied the prescription pain cream I've just got and helped me up on to my jelly legs and into  bed.  She sat with me for about an hour, calming me down.  It took a long time to stop sobbing, and to breathe normally.  My arm felt 'odd' - as if it wasn't really connected to my body properly.  She did some reiki on my arm and on my head, and eventually the drugs worked, my breathing became steadier, and I did begin to relax.

It all sounds so ridiculous, so dramatic and so difficult to understand why I couldn't control it.  I have learned this year that these are all parasympathetic responses to pain - something I'm not in control of, no matter how hard I try to fight it:  it's my brain's reaction to my body's pain.

The next day I was very sore and absolutely exhausted from it all.  Again, it sounds silly to say my body had been through a trauma, but again, that's what's been explained to me.  When they say someone is treated for "shock" at the scene of an accident - it's a genuine physical response to a traumatic event - not something we can control (despite my best efforts this year).  We had friends coming for lunch the next day.  I managed to get dressed - sweatpants and a T-shirt, but it was a step up from my PJs.  I even managed to put a little bronzer and blusher on the grey face staring back at me from the mirror.  Despite that, when our friends arrived, he took one look at me and said, "you don't look too good" - and I looked better than I felt!

It took me a few days to get over that exhausted, physical-trauma feeling and for my pain levels to calm down a little.  I'm still not 'over it' and am hoping it is a blip more than a set back.

My physio thinks that it is likely I broke up some scar tissue with the movement I did.  Why with the same exercises I've been doing?  No idea.  He has been using ultrasound again for a few weeks, and I am taking a supplement (called Lumbrokinase) that is supposed to help with scar tissue; it's possible these things are working and the scar tissue has been weakened and as a result ripped apart.  In the long term, this is a good thing - I need my scar tissue broken up to 'unstick' my frozen scapula, but ultimately it is still tissue ripping apart inside me, and, yes, that hurts much as you'd imagine!  It can cause severe pain - although my reaction was extreme, even for that, apparently.... however, it was pointed out to me that nothing in all of this has been 'normal' - it really doesn't even have a precedent.  It still always raises the question of RSD, or "RSD-type pain" as my therapists prefer (as do I).

In addition, there seem to be some nerve-related issues going on, whether that was also a cause, or is a consequence is unclear.  My right hand burns and has numb patches.  My right arm feels not quite attached to my body - it is a strange sensation, difficult to explain. On Monday at physio, Angelo took measurements as my upper arm was quite swollen. Where it should be atrophied and skinny from lack of use, it still measures 1cm-2cm thicker than my left (good) arm at the same points. I have a compression bandage on my entire right arm now to see if that can help with any fluid or oedema.  It does help ease the burning most of the time.

So right now I am back to the simple ROM movements again, not too much stress on my shoulder and giving my body some time to recover.  Frustrating doesn't even begin to cover  it.

I did try some of the strength exercises under supervision at my physio appointment today, but I couldn't do them all and I didn't feel good.  By the time I'd walked from the clinic to the car, and my Mum had driven (almost) out of the car park, I had to ask her to park again to let my anti-nausea tablet work, as I had jelly legs again and felt like I could be sick from the car moving. (I was able to take enough meds to help things ease off, and we still went for pedicures as planned - something enjoyable and relaxing anyway... and happy pink summery toes now it is flip flop weather!!)

On the positive side, although I seem weaker than before, testing my muscles has shown that I have not done any major damage - my movements are still all there, and my 'new' muscles are still working (except lifting my arm - it is still too painful to have it lifted passively, so no active lifting right now either) and the actual surgical repair is still looking good - a big relief.

The question remains though: why do I still have so much pain on the lateral side?  And why is my pain response still so severe? These have been the main questions for months now - and the answers are still elusive.... and I still feel every week seems to bring more questions.

Which leads me to some wise words from my favourite genius:

“The important thing is not to stop questioning. Curiosity has its own reason for existing.”
  ~ Albert Einstein

No comments:

Post a Comment