But I ain’t one of them.

IT FRUSTRATES THE LIVING HELL OUT OF ME!!!!!

Sigh…. that feels a little better.  Yesterday the BCC had a free weekend where you could take as much green rubbish (trees and prunings etc) to the ‘Refuse Transfer Stations’ – a DUMP by another other name smells just as foul – to try and encourage residents to get their trees trimmed back ready for the storm season.  So we decided it would be a good weekend to cut down about half a dozen trees that had been ill-advisedly planted by the previous owners that were getting way too big and were way too close to the fence.

We got a chainsaw, hired a ute, pruning shears, gloves, hats, sensible shoes and everything else you need for a day o heavy yard work…. and then I spent the entire day watching the guys do all the work  🙁  I spend half my life watching other people do the things I wish I could do for myself.  My Mum who is in her late 50s is stronger and fitter (and painfree) than me.  She’ll come over here grab a ladder and clean MY gutters or get outside and weed my garden for a few hours and I can’t do that stuff without ending up in massive amouts of pain.  And it frustrates me to tears that I have to get other people to do the jobs that I want done.

But it’s not just the work.   I stand by and watch my friends go motorbike riding … something I’ve always wanted to do.  I’ve watched friends go white water rafting, scuba diving, parasailing, hell I even stood by and watched my Dad with MND and his father (my grandfather who was 89!!!) go sky diving!!!  It’s shit. 

It’s just shit feeling like you’re sitting on the sidelines of your own life when you desperately want to get in and get your hands dirty.
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When I lay me down to sleep,
I pray my Lord my soul to keep
but if i die before I awake,
Well thank fuck for that cos I’ve had enough.

By the end of the day when I’m feeling exhausted having spent a lot of mental energy ignoring pain and even more mental energy trying not to complain about being in pain to the poor buggers who have to put up with me all day….. this is when I’m at my worse.  Fatigue makes it so much harder to deal with being in pain and by the time you’ve had a couple of consecutive nights of poor sleep… the added sleep deprivation makes it nigh on impossible to concentrate on anything BUT the fact that your body is telling you that you’re in pain.  It’s totally pervasive and absolutely debilitating and I can not describe how fucking over it I am.  I am literally running out of words to explain how shit I feel from morning to night, day after day and I am quite confident that no one wants to hear it anyway.

The only respite I seem to get from the constant pain is the two or three minutes when I first lay down in bed at night.  For an all too fleeting moment, my brain and my body seem to be kinda confused… I spend all day trying to keep moving… just kinda pottering about, sit for 20 mins, wander around the kitchen, tidy a few things away, fold half a load of laundry and just constantly moving and pottering about so I don’t exacerbate the pain by being too sedentary.  So when I lay down at night it feels like my body doesn’t seem to know how to react to being in a recumbent posture and for a brief couple of minutes the pain signals almost go away I have a welcome (but all too brief) feeling of relief.  But when those couple of minutes have passed my back seems to go… "Wait, wait. Hang on a minute. What have we got here?  We’re in a different position and just a minute… Yep, there it is – pain signal back ‘online’ for you there."

I wish I could just reboot my brain and sorta reinstall my nervous system so it would stop with this constant malfunctioning nerves bullshit….  I’ve a sneaking suspicion that I may have been designed by Microsoft.
🙁

It actually feels like that.  I might lay down with my neck and upper back being the area that seems to be passing on pain signals, but when i get into bed and lay down I get a fleeting couple of minutes of diminished pain and then suddenly it’ll ramp back up again but maybe in a different area, like in my lower back or something.  I honestly think the nerves somehow get confused from the different pressure/gravity on the body and then adjust themselves accordingly so they can resend pain down some other path.

Would you believe me if I said the most relaxing thing I did this week was having my legs waxed?

It’s true.  Its one of the few things guaranteed to take my mind of my back pain for a few minutes and I actually find the slight pain associated with ripping the hairs out of my legs with warm wax kinda relaxing.  I once told one of the beauticians that I found getting my legs waxed relaxing and she looked at me like I was some sort of S&M freaker for the rest of the appointment! 

Which couldn’t be further from the truth… I don’t find pain erotic, and I can’t for the life of me understand why someone would willingly put themselves into situations to be deliberately stimulated in ways to elicit a pain response… it makes no sense!  I am pretty sure most chronic pain sufferers would agree with me…  pain just isn’t sexy.
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