ME/CFS. Relentless.

Today was effectively a rest day with some osteopathy thrown in under the care of Dr Locky Goodwin.  I look forward to our sessions…it’s a good chat about the week that’s been with expert advice and corrective action to help keep my body on track.  Today we joked at my lamenting I did not discover adventure races and the like until now…I’m struggling with a 24yo brain, heart and lungs held together by a 42yo body and not coping well with having to deal with mystery aches and pains.

How we all took for granted those days where you could just get up and choose from any number of get-in-amongst-it activities, fearless and injury-free:

  1. Escape with a 20km trail run (Mt Wellington tracks are magic place to run)
  2. Enter what is claimed as the hardest half marathon in the world !  (we did this one a few times…Point to Pinnacle, 21km from sea level to 1,271m…check out the photo below)
  3. Ride the mountain bike up Mt Wellington and treat yourself to a 21km downhill single track bonanza (broke the end off my elbow with this one)
  4. Throw some weights around before doing 1 or 2
  5. Have a massive night out with mates, crawl home at dawn, get up at lunch time and do 1, 2 or 3 (might have done this once or twice)

A worthy finish line to an awesome half-marathon. How magic does sleepy Hobart look? We love Slow-bart, we do.

What bullet-proof critters we are in our prime. Now I’m held together with kinesio tape, anti-inflammatories, pain killers and enough supplements to turn my poo green for a year (a “good” green, that is).

Before I get too carried away with poo talk, I had another epiphany during today’s session.  In the past I’ve often scoffed at people choosing to receive a Relaxation Massage.  “What a load of bollocks”, I would think to myself.  “What is the point of that??” I would exclaim quietly to myself.  Well now I know.  With the best of intentions and proven medical science behind them, Locky and Nikki have mercilessly hammered 80% of my connective tissue and muscle over the past few weeks.  Enough to bring on sweats, twitches and torrents of verbal abuse and profanity. I hereby state for the record that I would crawl over broken glass for a Relaxation Massage right now. Just don’t tell my boys.

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I deliberately wanted to touch on some of the activities that Marcelle and I used to do together…not just to remind people of her awesomeness, but to bring into perspective what ME/CFS takes away. It removes spontaneity. It denies opportunity. It accelerates ageing. It ruins friendships.

I know that reading this will upset Marcelle a bit (sorry, hon x).  You know what you’ve lost….you know how tragically different things are now…but reading it all in black and white hurts.  Unfortunately, we both know the Tough Mudder Mechanics project is incomplete without this insight. It’s important people understand the impact this illness can have on more than 180,000 Australians. The two day walk through Wilsons Promontory in early July is pretty much ground zero for her current state of affairs. The price paid for doing something normal…something we once took for granted. Since that magic walk through the ‘Prom, Marcelle has been on a relentless rollercoaster of short peaks and long troughs, desperately trying to ‘keep up appearances’ for the boys and keep the house functioning. Even 6 weeks later, she is still pretty bad…displaying a broad array of physical and neurological symptoms including severe fatigue, confusion and disorientation.

Honestly, I can tell you that even after all these years of ‘practice’ I am still not suitable to serve as an example for stress management techniques…my inability to cope on some occasions continues to dog me, and I don’t like it.  I am a far cry from anything Zen.

The two pictures below serve as pretty good examples of the extremes of ME/CFS we have experienced at home. The picture on the left was taken when Marcelle and Gus had to relocate to Hobart for 6 months so she could receive better care and rest while Liam and I stayed in Melbourne for work and school.  Not a good time.

To cap off all that, it looks likely that Gus will be making his second trip to the hospital in as many weeks.  First for x-rays on a suspected broken wrist from a fall at school (bad sprain) and next for more x-rays on a suspected broken bone in his foot after kicking the bottom step at home instead of the soccer ball…hopping around on crutches at the moment.  Poor little bugger.

With all this going on, Liam is reaching the sharp end of the stick with his school days coming to a close soon and VCE exams looming.  He’s a poor little bugger too…I remember those final exams…hated every minute of it. He’ll do a much better job than I did though  🙂

He’s smarter than he looks 😉

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Think of those trying to cope with ME/CFS.  Please consider a donation to ME/CFS Australia.

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