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I will bounce time

Posted Oct 06 2011 12:00am
Adapting to my body changes has been and continues to be a struggle.  Sleep dominates most of my day but I cannot fight it.  It's impossible now.  When I envisage just how much my organs work to keep me alive, its no wonder.  They are damaged mostly beyond repair.  My heart, my lungs, kidneys, liver. The longer I go on the weaker I'm becoming.  At the end of the day its not a surprise and I have been gifted with an extension of life that I am ever grateful for. My job now is to make changes, no matter how radical to preserve what I have and have the fullest life I can.  If that means accommodating the constant fatigue and breathlessness as priority then so be it.

I have already started doing the following:

  • eating even smaller portions at a slow pace
  • sleeping where and when I need to
  • no set/fixed plans just go with the flow
  • work ends at 6pm (inc emails)
  • use oxygen to supplement exercise
  • watch telly guilt-free
  • check emails once a day
  • reorganise cupboards and parts of home for easy access and mobility
  • major de clutter of rooms and add hooks and storage drawers on wheels
  • organise homemade frozen meals 
  • new makeup to hide my blue tinged lips that seem to be here to stay!
Yesterday was pretty terrible to the point where I was crying.  The agony in my chest was unbearable and no pain relief seemed to alleviate it.  This was coupled with really severe breathlessness at the slightest of movements such as turning my head in bed.  I must start ensuring my mobile is with me at all times incase I am alone and need emergency help.  Feeling like I was on the brink of collapse all day long was no fun at all.  A planned meal at a venue called 'the secret garden' was messed up as a result but I was pleased that mum and her friend were able to go.

Today, thank goodness I feel a notch or two better but still a way to go.  What does annoy me is that I am on a very long waiting list to be allocated an OT(again) as there are a few things that need adapting in my home to make my life easier.  I'm not sure why these social services are so eager to sign people off and failing to recognize that my health concerns are long term.  I'm not suddenly going to sprint in a years time.  Yes, I cope well usually because I make that happen and have my mums support but otherwise I would have floundered a long time ago.  It annoys me that the physio has stopped and I have no case worker.  The system is full of knots and people are suffering as a result.  Once I get more help I think I will be able to do much more.  Relying on others is not easy. Everyone has their own lives and can't accommodate me at times when I need.  Its life, no ones fault.  I appreciate the times when friends and family can help me out with things like laundry, recycling, grocery shopping. I'm very lucky and value their generosity.  But I need routine and organisation.  I can't struggle in every facet anymore. I just haven't the energy to do it.

The other day I felt like a failure, as though I haven't achieved what I set out to do.  But I know I have done my best and will continue to.  

Doses of TOWIE, Made in Chelsea and anything else that makes me chuckle has helped me loads lately to put things in perspective.  I know I can help myself here. There are changes I can make. I can feel better, maybe not 100% but a bit.  I'm always happy with a bit.  When busy at work and more active there was less time to ruminate. I won't lie, I miss my old life terribly but having even snippets of it is fantastic, I treasure it wholly.  I now need to give my body the ultimate respect and I will bounce time.
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