I will be having chocolate cake … a lovely dairy/lactose free giant slice …
It is not a celebration
But I deserve chocolate cake
Seven years diagnosed.
Who’d have thought I’d be sitting here typing like a normal person at 0722 on Thursday 21 November 2019.
I certainly didn’t think that on Wednesday 21 November 2012, seven years ago today, when I was diagnosed.
Actually, I didn’t think that about half an hour ago as well. Half an hour ago PD was throwing everything at me with knobs on … meds now kicked in miraculously and I have a brief window to type and speat (repeatedly self pity)
7 years flipping heck.
I haven’t posted a sensible considered post for a while. PD has been throwing everything it has accumulated so far in it’s ‘bag of stuff to throw at me’. I say ‘so far’ as I know there is more to come.
When I was diagnosed my initial feeling was relief, relief it wasn’t an inoperable brain tumour. Relief this ‘thing’ had a name and I could tackle it head on. Just to ‘reassure’ you I am not an over positive mad woman (apart from when I am) that it wasn’t just relief, I very quickly became angry, frustrated etc etc and every other emotion you can think of (apart from that one)
Two things I was told in those first few weeks …
I will have ‘five good years’ and’ I am not ill I have a condition which needs to be managed’
‘Five good years’ was certainly true …. Those first five years I look back on as the ‘Parkinson’s ‘honeymoon period’’. As with everything PD you really have to be in it (and more specifically me) to understand. PD is so bespoke that even fellow PDers may well not relate to what I am going to write.
When I went along to my first appointments the symptoms I had been having were unignorably PD, but they were also not impacting that much on my life. Don’t get me wrong at the time they were really horrible and upsetting (but nothing like today) but despite that I was still getting out there doing my stuff. I also had an instant ‘disease pass’ into a new circle of friends, support groups, and leaflets coming out of my ears.
Finally, someone believed me, I was fortunate to have a brilliant supportive team of medical professionals, and so never floundered. Well I floundered, but in comparison to today that was a paddle in a puddle, today is more a struggle in the sea, I will not waste my valuable time thinking of an alliterative duet for the next stage.
I am not burying my head in the sand … I am NOT burying my head in the sand. Okay, would you blame me if I just lay my head on the sand and peeked from behind a sandcastle for a while? But I don’t want to waste my emotional energy dwelling on what might happen when anything could. I may have an unpredictable degenerative neurological condition, but I could also get hit by a number ten bus like every other person on the planet. Everyone’s future is unknown.
‘I am not ill, I have a condition which needs to be managed’
I do and I am trying so so hard to manage it, but PD is ramping up the times I switch on and off with freezing, dyskinesia and dystonia.
It is difficult to put a positive spin on not being able to move or not being able to stop moving. Often when I explain this to people, people don’t know what to say so they say ‘and which do you prefer?’, before they realise what they have just said.
My management skills are definitely waning … I started off as a Ferguson and am now more of a Flump.
I was going to post the other day but my PD typing was so bad I had to give up. So here goes, seven years and what’s it like? …
Friends ask me ‘what I do’, ‘how I fill my time’ … etc, and the 80 zillion dollar question ‘what are you doing this week?’
To be honest a lot of medical appointments for PD and my various other twaddles. These appointments/consultants are spread across counties. I always make sure, apart from when I don’t, and then I (sorry PD) kicks me later, that I take notes about all my other ailments to make sure the medical teams cross reference medication etc.
One thing I have started (and you may have noticed) is writing and spreading awareness. This is everything a traditional job isn’t.
Last minute changes are not challenged
And I can miss whole days without me sacking myself
PD is becoming so unpredictable it is mind-blowing
Hours or minutes of apathy are common.
The dictionary definition of apathy is ;
apathy, NOUN, lack of interest, enthusiasm, or concern (Cambridge dictionary)
This is like saying, …. Yawn … can’t be bothered to think of an analogy. Suffice to say it is a complete understatement.
I was that person who did things at a zillion miles an hour and got things done – that’s neither good or bad. Just a statement.
Today I am still occasionally that person, when meds are working well and everything goes to plan, then I do try to do as much as I can as I don’t know how long I have until PD decides to switch me off again. However, this is self-defeating on many levels, especially the level where I use up any surplus dopamine by doing too much and leave the rest of the day in disarray.
This is difficult to explain to a friend I am letting down, ‘sorry I can’t come to the long arranged theatre date, I have lost interest in spending time with you’’, really doesn’t define PD apathy.
PD apathy is a complete weakness and inability to, in layman, terms, get my ar*e in gear’. Not due to the apathy described in the dictionary. This really is difficult to explain, but in a nutshell it is a usually dynamic, efficient 51 year old, reduced to a apathetic, crying, inactive ‘being’.
The dyskinesia (continual movements) is now getting so bad that at times it is (almost) dangerous for me to leave the house. The freezing at times (almost), stops me leaving the house.
So, I have many contingencies if I am really stuck including ‘phone a friend’ to help and ‘phone a taxi’, to get to places.
7 years on my feelings are very different; anger and frustration. Why me, what did I do wrong? Also, the feelings of anger which regularly surface when I really struggle (and I mean really) to do something simple like walk across the room or make a cup of tea
Oh yes, back to Tuesday. I was due to be selling Christmas cards at a local voluntary charity pop up shop. I do it every year and I really enjoy it.
Well this Tuesday it was cold and PD was really kicking off. I got as far as the driveway and booking a taxi. And then in the zero degrees cold of a Tuesday November morning at 9am I had no choice but to cancel the taxi and then let the lovely patient ladies know that I wouldn’t be at the card selling.
In the paragraph a few paragraphs above the more observant amongst you (put a star on the chart and a chocolate in your mouth) will have noticed the ‘almost’ in brackets. This is the first time I can really truly say PD has properly stopped me doing something. Of course I dealt with this in an extremely grown up fashion, sobbing and swearing on the driveway.
The wise-ish man is often (annoyingly) correct, and a while ago said that one of the (many) bad things about PD is crossing things off. Now, up until now I have been a tad annoying and would say say (trying to be positive) that I am ‘ticking things off’ rather than ‘crossing them off’.
So, for example, although giving up tennis upset me, I would say in an annoyingly pseudo positive way;
‘I’ve done tennis,’ tick’, what’s the next challenge? Aah table tennis that’s (a bit) similar (ish)’ (apologies to anyone who knows it isn’t similar)
Rather than, the negative, ‘PD has made me cross tennis off of the list of things I can do’.
Even driving which I hated anyway, when I gave up, it was a tick rather than a cross and scribble to make me feel a bit positive (ish).
Well PD has now made me so unreliable I realise I can’t reliably hold down this voluntary job. Which to be honest has really upset me. I can’t say ‘tick’ and move on, as I really don’t want to stop, PD really has crossed this one off.
So, it could be doom and gloom today, but I will attempt a positive spin, I certainly haven’t been dormant or apathetic over the past few years (apart from when I have been).
My life is unreliable and unpredictable, my state fluctuates and rebounds about like a fluctuating and rebounding thing.
And still some people have never seen me switched off that is how ridiculous this thing is. Some will think PD it is just freezing, some won’t even know I have it if they always see me for the switched on minutes … it depends on so many factors and changes so quickly.
In the words of the small child with the ringlet …when I am good I am very very good and when I am bad I am rubbish.
Phew, like that economical chocolate bar, the curly wurly … that was a long one.
going in search of that Vegan Chocolate Cake …