52. An Important Ode : No Head Tilting

Sometimes I feel like I am on the Truman Show …

I have always said this blog will not include photographs of my lunch. Now I have just realised in a (probably) psychoanalytic (amateur) way, that not including ‘photographs of my lunch’ could mean avoiding writing about things which are not so easy to write about.

Now this is getting difficult, in order to talk about PD properly I need to dig deeper.

Anyone can make motor symptoms into a funny ditty –

  • There was a middle aged lady from Nemor
  • Who had a bit of a tremor
  • She walked a bit dodgy
  • Her knees were a bit wodgey
  • And she was awful at limericks

However, the invisible, non motor symptoms, are more difficult to write about.

  • There was an old lady from donstapation … and so on and so forth

I may appear to be always outgoing, positive and proactive, but that is interspersed with some very low moments.  You may see me dancing on a Saturday night (I do), and then hardly able to walk once the music stops (I can’t).  Those kind of switching of symptoms can be difficult to cope with.

The non motor symptoms, including,  lack of motivation, apathy, depression, crying for no reason, insomnia (and to add insult to injury, consitpation) are all kicking off as well.

Sleeping is so difficult at the moment.

Just thought I’d throw a curve ball ( now is that a boomerang?), and include a very very long ode.

I started this blog to try and explain to friends and relatives, i.e. people without PD, about the symptoms and living with the condition.

The blog has moved on since those early days.   My audience (hark at me, I only ever thought I’d be part of an audience), has expanded and now includes people with PD.

So with this in mind, there will be more … day to day stuff about dealing with PD.

Please no emojis … or head tilting

A rambling ode … written by ‘Janet’

Janet always worried about this and that
About washing up and feeding the cat
Janet was efficient, she got stuff done
Never a ready meal, ironing always done
She helped her friends and ran the home
And was always there at the end of the phone

Five years ago she got an unwanted gift
Which has gradually changed the way she lives
She no longer worries about washing up and feeding the cat
Or about ironing; she never gets round to that
She has lost her spirit, she has lost her drive
She used to get things done, of perfection she would strive

Today, she’s always busy, but things are never done
She never has time – is she too busy having fun?
Fun, that’s an odd word, I bet you’re confused
Fun, you never expected that word to be used
Janet is often seen out on the town
Dancing, singing, and not being down

However life for Janet is often pretty crap
But she tries to keep going and not dwell on that fact
PD has symptoms which could drive her up the wall
Even the meds have side affects, I won’t list them all
So many symptoms, affecting so much of her life
PD is trying to take over, take over her life

Pain, stress and insomnia too
Depression, fatigue, and going to the loo
Tremor, stiffness, rigidity, unable to walk
And probably one day she’ll be unable to talk
Compulsive, impulsive and hallucination
Flaming heck this really isn’t a jolly song

PD has it’s own agenda, it has it’s own rules
It does it’s own thing, it has it’s own tools
Janet never knows what PD is going to do
Will she be unable to walk when she needs the loo
Yes, this simple worry is one of many you see
Which preoccupy Janet’s mind, (enough of her wee)

One minute frozen, the next she is thawed
Sorry, a lot of you may now be bored
With Janet harping on about life with this thing
Well you can unsubscribe and just watch her dancing
And whilst you watch you can think to yourself
PD is not so bad, Janet is not on the shelf

But that’s not the real PD, that hides underneath
Is Janet smiling, or baring her teeth?
Janet asks you to stop and think today
Of how you would feel if PD came your way
Would you stay indoors, so as not to be seen
Or would you go out, dance and produce some dopamine

Janet has been living life to the extreme
Of taking an extra med. when she is going to be seen
Often living for today, forgetting about tomorrow
But then too soon tomorrow is filled with sorrow
Tiredness and apathy still strikes every day
As she tries to forget the disease, and make it go away

So Janet promises the rest of this blog
Will include the things people don’t like to speak of
That’s invisible symptoms, and when times are bad
She’s not always happy, sometimes she’s sad
She can’t be positive all of the time
But the blog will still be quirky and sometimes written in rhyme

Onwards and Upwards …

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