82. This is how it is….

This is a warts and all post (no warts yet) written straight off at 3am.   I am fine but this is how it sometimes feels like . Not every night and not all the time …I will listen to some music regroup.

I cannot stand
I cannot sit
Feeling 100 percent shit

I cannot shout
I cannot cry
I am not going to lie

Please noone wake please world stay asleep
I don’t want anyone to hear me weep

This is 3am
In the light of day I will start again
But atm I am awake
Standing still
Trying to be human
Wishing I wasn’t ill

Yes Ill because that is what I am
I could dress it up
But I don’t think I can
There is no other word st 3am
I am Ill
There I said it again

81. Flipping heck …

Crikey don’t know what has happened … PD is switching on and off, in and out like the flipping hokey cokey

I think it read post 80. and thought aha I will keep her angry at me …

Freezing up all over the place .. and because of hip replacement op (need to do a whole blog post on that one) I can’t dance to get out of the rubbish PD.

Need to refocus – which involves chocolate and loud music …

 

80. Chronic Disease …

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 …