86. My Parkinson’s Career

Some (odd) people might think that my life is purple, sparkly and tastes of aniseed – well it isn’t.

Every day for me is the same, but different …

For me every morning is Monday … like the ‘normal’ working population I awake every morning tired and unsure of what the Boss (Mr PD) is going to throw at me today.

I don’t work in the traditional sense, my job is : …

  • Managing PD
  • Waiting for meds to kick in.
  • Dropping things on the floor.
  • Waiting for meds to calm down.
  • Waiting.
  • Talking about PD
  • Exchanging tips about PD
  • Standing frozen, waiting for meds to kick in
  • Doctors appointments
  • A bit of charity shop rummaging … sparkly cardi for a round pound – oh yeah
  • Messing the house up (unintentionally)
  • Picking things up off of the floor
  • Doing what I can to produce my own dopamine on a budget
  • Timing doing things round meds being on …
  • Writing, blogging.
  • Laughing every other Thursday.

Having PD is really a full time job – it runs my life, and rules my days and nights.  Even if it isn’t kicking off, it could at any moment

I would love to get a full time job – and for maybe a couple of hours a day I am normal and could do it – but those couple of hours would not necessarily be at the same time each day or even all together.

You may see me physically outwardly tip top for more than 4 hours, but more often than not something invisible will be going on …

Also the couple of hours is a guess – as some days it would be 2 hours, some days 1, occasionally 4 hours with no PD interference.  But these would rarely be concurrent and would be at different times.

The opening hours of the shop (for example) would have to be blue tacked onto the revolving door, ‘shut’ ‘open’ ‘open’ ‘shut’ as my changing symptoms change the status of the retail establishment.

Apathy is wasting my day …

Trying to get some focus in my day, to get things done by using an app on my phone.  It divides the day into segments, and I decide what needs to be done.  So I write a list and, then the App asks me to type in the activity, such as writing newspaper column, tidying living room, and then it puts timer on for 25 minutes. Alarm sounds, and the App then times a 10 minute break.  And so on and so forth.

Has it worked – well no not yet.  Keep overriding the alarm.

I keep thinking tomorrow I will do it properly … nice idea though.

I also have a social media time ration thing on my phone to try and stop me wasting time… at the end of the time allowed for that day, the screen goes dark … then it says would you like to ignore this and carry on …. well derrr yes ma’am.

Case study … this morning ….

Woke several times in the night as per….

Then this morning, back spasming and twisting.  Uncomfortable is an understatement.

Didn’t know where to put myself, everything unbelievably uncomfortable. …lie down, sit up stand up … everywhere I put myself my body was being aggravatingly silly.  Back arching and body twisting and clenching and rigid.

Then both feet went into dystonia, clenching and twisting.  Very little sleep in the night.  Meds didn’t kick in at 630am, nor 9am … managed to go back to sleep and finally operating around 12.30pm.

Apathetic day today, not due to laziness due to blurrrrr.

Lack of sleep  … at the moment lack of sleep is really dragging me down.  Several of my drugs can induce sleepiness or sleeplessness – those ‘in’ and ‘less’ middle syllables are vital …   I cannot just stop and try new medications, it is not like thinking, oooh I’ve been consuming ‘rhubarb and custards’ three times a day for the past 6 months, lets try and substitute them for ‘humdrum humbugs’ tomorrow.  No, the ‘rhubarb and custards’ would have to be carefully removed from my regime and the ‘humdrum humbugs’ slowly introduced.

Yawn, but the yawn is important, gradually reducing the medication should be boring.  If it is excitingly sudden, then you will ‘do yourself a mischief’ or worse.  It really is dangerous to stop taking medication suddenly.  ALWAYS SPEAK TO A MEDICAL PROFESSIONAL.

So lack of sleep is a contributing factor to morning rubbishness.  I need to time my morning meds to co-incide with the mornings activities.  So when I had to leave home at 6.30am, I was up at 5am to start taking meds.

Quite Literally the first thing I think of in the morning (and every time I wake up) is when did I take my last meds and what was it, and can I move.  Sometimes I can sometimes I can’t – what an eclectic life I lead

Job Description : full time, no overtime, no bonus, no pay, no sick pay, no holiday pay or otherwise.  PD must be carried with you at all times in this big rucksack with spikes on it (okay not literally, but (hopefully) you see what I mean).

Life is Artisan

(a little bit rubbish and a bit wonky)



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