A wise man said that there are five stages of coming to terms with a chronic condition; denial, bargaining, anger, depression, acceptance.
I definitely haven’t reached acceptance … I can’t even imagine what acceptance will feel like, but I hope it feels good and tastes of chocolate.
I have touched upon denial, bargaining, and depression :
Denial: I don’t believe I have been in complete denial. But I am often quite stubborn and I refuse to make allowances for PD
Bargaining: if I do something in exchange for getting rid of PD, fundraise for example, with the hope that it will go away.
Depression, I haven’t been depressed but I definitely have very low points.
Anger: just recently I have started feeling that when things start going well PD is waiting to disrupt it. Anger is definitely affecting me … well maybe less anger, more intense frustration.
I can honestly say this is the first time in the six years since diagnosis that I have felt angry – this may surprise people without PD. Surely being diagnosed with a degenerative (currently) incurable neurological disease would make me angry. Well, no, to begin with it didn’t. I felt relief that someone believed my symptoms,.
The first year of diagnosis I would call the ‘(slightly odd) honeymoon period – now before people think I have gone completely doollaylly – let me explain. I had had symptoms for a long long time, no one believed me, I had got in quite a low place and felt very alone. Then all of a sudden eureka someone believed me, it had a name. I was very fortunate that I had a PD nurse, and was put in contact with a new community who understood. Early on set is a select group, but through social media etc, I found new friends and a community. In the early days the PD was really (compared to now) just an inconvenience, always there, but didn’t stop me doing anything.
Today is different – today when PD kicks off I literally stop walking, or operating, or slow down or cry or shout. Honeymoon period is over – now it is taking hold. I am angry that it is properly disrupting my life – and it won’t ever go away. My life is ruled by tablets, organisation, planning, flaming PD.
As we know negativity is bad … it just makes us feel sad and drags us down. I know I need to turn it around. I know I can do that.
I spoke to the Samaritans this morning – to talk things through… they didn’t offer any advice just an ear. I wrote this as well – straight off – it is how I deal with things. I work things through with words – I will turn this corner, maybe not in a handbrake way but more a slow meander …
It’s so unfair having this disease
It is wrecking everything and it does so with ease
It does’t care it doesn’t love
It doesn’t know what it is doing
It just does
Another perspective :
PD is not cruel it is not unfeeling,
It does things without thinking about it
It is not premeditated
It doesn’t hate me
I need to learn to live with it by my side
I need not to hurt
I need not to blame
I need to think of PD, not as the enemy
But as a disease which needs help
I can’t get rid of it
It can’t get rid of me
I need to work with it
And not fight against it …
Fighting wastes energy
Fighting is negative
Negativity breeds contempt
I need to learn to move with it
I need to learn to live with it
I need to feed it the dopamine it craves
I need to be kind to myself
I need to live with PD
PD needs to live with me
When PD breaks through
I need to calm it down
Trying to keep going doesn’t help
Trying to work through it doesn’t help
Trying to fight against it doesn’t help
Hating it doesn’t help
Maybe trying to listen to PD
Trying to listen to my body
Taking it on board
Just trying not to be negative
Negativity squashes positiivity
A change of mindset …