A not so great day...

Hi there beautiful people,

Hope that you’re all well.

Unfortunately, I am not feeling myself this week. We said Goodbye to Honey(our 13 year old Labrador baby) she was an adorable old lady and she was ill. We feel heartbroken, because just 3 months ago, we said goodbye to her brother Charlie. We’re feeling so heartsore because we will always see them as the 8week old pups that we brought home.

I know that loss is inevitable, and they lived a good life... but at times like these, I’m just knocked off the positive road. I am overwhelmed with sadness, and it is okay. It will take time.

Going through a bad day, means my medication doesn’t work as well. My spasms and involuntary movement gets worse and the facial dystonia hurts.

So today, my story is a little different. I’m letting you into a space that not many see.

One of the really low feelings that any individual with a health or physical condition has to endure, is the fear of being a burden to your loved ones.

It’s also, watching your caregivers and loved ones feeling exhausted and yet they’re still trying to help ease our pain. It’s days like these that we often ask... “It is fair for them to have to experience this?”

My husband and 2 girls play such a large role in my care.

There is new found respect that you gain for your caregivers, life isn’t easy. He now holds down two full time jobs( his career and my caregiver)as well as that of husband and father. I watch him feel helpless sometimes. I see the sadness in his eyes because I know, that he wishes , he could cure me.

Thank you for all the sacrifices that you constantly make, to make my life easier and ensure that I’m comfortable. To make me smile and to try make any want or need that I may have ...possible. I know that i am not the easiest person to please, especially on the bad days.

And then there are days that we both are frustrated, yet we somehow manage to pull through,

It is so heartsore as a mum , to see the fear that your children experience, every time I fall, whenever I choke, or can’t get out bed. The pain that I see in their eyes when they watch me going through pain.

My eldest girl, attends university in another province. We felt that her leaving home was the best option for her. I didn’t want her to be a caregiver and a mum to her sister. I wanted her to enjoy, being a student and hanging out with people her own age. She has such a beautiful selfless soul , that she will give up everything to take care of me without me even asking. Unfortunately, COVID happened and she did spend the past year having to grow up and take on so many responsibilities. I really didn’t want this for her... this saddens me.

Another heartache, is that my 10 year old , had to grow up so quickly and way beyond her years. Over the last 3 years, she watched her sister leave for university, Parkinson’s became a reality to her and she suddenly felt lonely and scared.This was emotionally and mentally draining. She watched me fall and injure myself, she’s witnessed her mum choke and unable to breathe, at 10 she understands what I can’t do , so she’d won’t even ask. She knows which meds I require and when. She constantly reassures me that she will love me, no matter what.

I wish that I could do more, I try ...and promise to continue trying to be there for them. For they are my silver linings. This is more difficult that you think. But I will not give up fighting PD, I will stay as positive as I can. And be the mum that my girls want and need me to be.

To each and everyone of you reading this today... don’t wait for the diagnosis, we don’t know what tomorrow holds. Before today ends , let your loved ones, know that you love and appreciate them. Breathe and let go of anger that you’re feeling. Apologise, to those who you need to apologise to. Let go of grudges. Hug your children tight and tell them that you love them. Remind them that they’re beautiful and let them know that you’re proud of them.

If each one does this and pays it forward then maybe just maybe tonight there will be enough love spread, to make tomorrow a better day.

Thank you for reading.

Wishing you love and light

A