Hi, thank you for your messages and comments, keep ‘em coming. Don’t forget to have a chuckle at the A-Z of Parkinson’s out every week for well…you can work out how long! Also, a little shout out for the lovely gratitude tips you give me! It all helps keep me sane (i.e wine) but mainly helps me run this letter. 😍
We’ve established that this is an absolute ball-ache of a disease, right? So if it’s bloody awful for us what about the people around us? Those that have to watch as we struggle and decline. They listen to our worries, pains and frustrations. They smooth our path in a hundred different ways. They worry for us and about us.
We need to remember that they might not be ready to accept all parts of the disease yet. I can state that losing the ability to do XYZ isn’t an issue for me. When someone around might find that the worst imaginable scenario.
Our carers need their own support network. And we need to be supportive of that! Of course, I miss R when he goes off on his trips camping in the wilds. It’s a thing I love doing as well. BUT he needs that time with his mates and away from me and Parkinson’s.
It’s absolutely ok for them to leave the room and take a deep breath…or scream.
We can’t expect our friends who don’t experience the new ‘us’ every day to always get it right. Even my closest friends still say daft things like… ‘you don’t look that bad’ or ‘you move really well’. I have to refrain from yelling ‘Yes! for five fucking minutes I can and then for the next 3 days I’ll be flat on my back!’
It’s quite good to clear our minds of expectations. I try to remember that R’s job is incredibly stressful, he’s a social worker. When he walks through the door I have to curb my desire to list all the shitness of being alone with Mr P entails. I try not to get pissed off when he needs to vent about his day.
Our carers, families, friends, colleagues in fact anyone around us deserves time off from Parkinson’s.
This tweet inspired quite a few of us to be more conscious about how we present the disease to others. I’m interested in some folk not sharing much and others more so.
I alternate between trying to hide my symptoms and oversharing! The problem is it’s exhausting being ‘strong’ and that leads to parky-hyper-mode.
In yesterday’s A-Z I added B for Brave…this applies to our carers, family and friends as well!
haveare a carer for a person with Parkinson’s (or any disease) you redefine bravery.
This is the sort of thing that makes you stronger than you ever thought you could be. This is where you start out feeling like you can’t manage another step, moment or thought. Yet, again and again, you prove yourself to be stronger than you were ever meant to be.
You sift out grains of courage from the deepest parts of your being. You share your strength supporting others, sharing and giving them hope to hang on in there…even when you can only see a foggy path ahead.
You find another reason to keep going, to keep battling on through the endlessness of it all. But for others, for hope, for love you keep going.
You are brave.
As ever pop your thoughts in the comments or hit reply!
P.S There is some good advice on being a carer here.
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& love your writing THANKS 🥰💕
I'm so lucky; my husband is a rock! I try not to overburden him, but l know l probably do sometimes. I try to have some days without mentioning the P word, but it's bloody hard because the disease is almost permanently in the foreground! And l've got another disorder on top of parkinson's: functional neurological disorder. I feel like a walking disease manual🤯 oh well....let's keep having a laugh...and definitely red wine 🍷 cheers!