Last Monday, I was feeling particularly down. My ‘off’ periods had been severe and longer than usual for a few days ..one lasting over 2 hours. The dystonia in my left foot was its painful self, and the right foot, which had so far been spared PD’s fury was starting to become affected too. My feet were curled and so painful, my calf muscles were on fire and I was feeling teary and sad. I read a phone message from my support worker saying that she wasn’t coming until 8.30 due to a mix up. I lay on my bed feeling overwhelmed, with tears running down my cheek, feeling so frustrated , so helpless, so alone….And I started to write.
The words came pouring out faster than I could type but I needed to say things that I usually keep to myself.
I needed to articulate what was going on in my head and I needed to do it without feeling guilty that I was experiencing these thoughts. Initially, I was just going to write down the things and leave it unread by anyone except myself but realised that it wasn’t going to be of benefit to me if I kept these feelings to myself… I needed to confess and feel better when I had.
Being an educator, I have felt it was my calling to educate the general public about Parkinson’s and help, them become more empathetic and also those l people who have it … helping them to live the best life possible.
There is a lot of pressure on me to always be positive , inspirational, unfazed by the PD’s attack on me..and I’m not sure whether it’s coming from Inside me or from other people… I’m guessing a bit of both.
Sometimes, people tell me to slow down and take a break from all the activities because I’m doing too much and becoming exhausted. But I HAVE to tell them that I can’t stop because I may never get started again. What I don’t tell them is that I’m terrified of stopping and stagnating in my home.
And So here is what I wrote..it’s a bit self indulgent and I feel a tad guilty that I’m feeling like this ..wrapped up in a pity party that is really no good to anyone.. and it’s hard for me to admit that I have such thoughts and feelings and that I’m not some super human. But I really need to say these words so that I can, hopefully, move on. I need to know that it’s ok to feel like this and realise that everyone has moments # of self doubt, of not wanting to face reality and to say
” this is crap , I feel sad , I’m not perfect.” And it’s ok to do so.
“The Unlikely Inspiration”
“You are an inspiration
You’ve helped me so much.
I look at you and wonder
How you can be positive and such.
You’ve refused to give in,
You scoff in PD’s face.
You are so strong and resilient,
Would I be so in your place?
Could I be as defiant
Or strong or as tough?
I watch you and wonder
If my strength would be enough.”
These are words that people have said to me
I hear them and wonder “How can it be ……
That people perceive me as this strong one
One fighting the fight
When I feel so helpless
When my body’s not right.?
I throw things in frustration ,
I cry buckets of tears.
And then pick myself up
And try to forget all my fears.
“Think positive the experts say
Don’t let it get you down
Put on a smiling face and
Upturn your frown “
But it’s hard to do that
When I’m scared of what’s coming
Scared of losing control of my body
And just feel like running…
Away to the land
Where I’m healthy and fit.
Where my body obeys me
And I don’t feel like shit!
Where I can be ‘normal’ and feel
That I can do what I like.
Dancing and singing
And riding my bike.
Go out with my friends
And play with the kids.
Laugh, work and read …
Things that PD forbids.
I don’t always want to be the one
Who is inspirational and strong.
I like it sometimes
Don’t get me wrong.
But sometimes I just want
To be seen to be me ….
The one that’s frightened
And from problems NOT free.
💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜
Now I just have to take a deep breath and publish this.
Am I scared that I will appear weak? Yes.
Am I scared that people will judge? Yes
Do I need to publish this? Yes
Do I need to continue to educate and help people understand? Yes.
Otherwise, I will feel that there’s no reason for me to have Parkinson’s , that it was an unlucky break , that I’m just going to waste my life going from ‘off’ to ‘on’ and take up space. I’m sorry if that sounds self indulgent but I need to see a reason.
well, looking back at this that I wrote last night and rereading it, it sounds a bit heavy. I know I’m supposed to be all positive and cheery but I’ve learnt that if I try to be so all the time I’m going to go nuts! I was reading some things on one of the PD Facebook page# and one lady said that she felt bad because everyone kept saying to be positive and look for the good things …and she just felt sad and angry cheated out of her life …. So I hope this blog helps her to see that even the strongest of us can get overwhelmed and angry and frustrated and sad.. AND THAT’S OK!!!!
cheers until next time
Sue E. Aka BobbleHead Nanna.
BobbleHead Nanna 