‘Blog Responsibly’ should be the first two words of this blog (that’s lucky then).
I thought long and hard before starting to write this blog back in January. It wasn’t started on a whim.
I realised from the beginning that I would need to ‘Blog Responsibly’, in a similar, but obviously very different way, to the mantra ‘Drink Responsibly’.
‘Drink Responsibly’ obviously refers to being aware of the effect of alcohol. So one of the many messages this brings is to be aware of the person’s health and how alcohol may affect them and others around them.
In a similar way I must blog responsibly.
- To be aware of my health.
- To be aware of how my blog may affect others.
But the blog also brings blog specific responsibility.
- To ensure readers know this is a personal blog.
- To remind readers PD is individual.
- To remind readers to consult a medical professional.
- To ensure the blog is balanced.
- To talk about the bad times, as well as the good times.
- To help people realise they are not alone, and often the most difficult times are the loneliest (and therefore the most difficult to write about).
This is what I signed up for. It would not be awareness if it wasn’t balanced. This blog must be warts and all (phew, no warts yet).
So Blog Responsibly – this blog is about the most difficult time in the 24 hour clock, the time when everything seems a lot worse.
PD doesn’t just happen during waking hours.
- PD is : Unpredictable, Unreliable, Unhelpful, 24 hours a day, Every day.
- Support needs to be : Predictable, Reliable, Helpful, 24 hours a day, Every day.
The blog proper (crickey I think the intro is longer than the blog).
- I listen to my symptoms and act when they are whispering.
- I am proactive and do seek help, from friends old and new, medical professionals and the brilliant support lines.
Old friends and new friends (who happen to have PD), have been there for me. Having PD is a bit like having a baby (bear with me). After having baby you meet lots of different people, the common interest is parenthood, other than that everyone is different. Similar with PD. I have met great people who if it wasn’t for PD our paths may not have crossed. I could be very schmaltzy and say that another symptom is being a very nice person, but I won’t (but it is).
Medical professionals are an obvious area of support.
Support lines are crucial. Before diagnosis I had never rung a support line. Soon after diagnosis I needed to speak to someone. But I kept putting it off, as I assumed I needed to have a plan of what I wanted to discuss. After all, when I call someone I generally have an idea of why I am calling and what I want to say.
However, I soon realised that I didn’t need a plan to call. Just the need to talk, or listen and not feel alone. Or to ask medical advice. If no-one rang the support lines the people working there would be twiddling their thumbs, they are waiting to speak to people. Picking up the phone and dialling the number and hearing someone’s voice who wants to listen has really helped me.
Okay (bear with me and go with it). Imagine a beautiful rectangular rug with a calming contemporary design. The rug is quite close cut, and is in a tantalising teal, with a subtle silver star in the centre on which you stand motionless. You are in a room with a domed detailed ceiling. You notice how a subtle lemon line loops round and round. It is quite excitingly intriguing how arse. Now that was probably a bit of a surprise. A sudden wake up call. The rug was whipped away.
So the fabulousness of Saturday night was amazing amazing amazing.
Monday night the rug was removed abruptly at 2am*. Now if this had happened during the day it would probably not have been as intense. The night intensifies everything and since PD diagnosis I do not sleep well (yes, another PD thing).
*In case you are not following me. After the fabulous weekend, when PD was relatively under control, it reappeared suddenly at 2am on Monday. A bit like a rug being removed and falling flat on my back.
Apologies for the mini pseudo expletive. I needed a shock word. ‘Bum’ would not suffice, ‘twaddle’ is ridiculous. This blog is not the forum for a proper grown up rude word. The word ‘arse’ probably made you stop and think – ‘crickey the editors in chief are not doing their jobs properly, deduct four squares of chocolate’. But it’s okay, I meant it to be there.
I got up at 2am and staggered and dragged around (not because I failed to drink responsibly, but because meds are obviously very low in the night). I was starving hungry, made some jam on toast, put some washing on and wrote an ode (as you do).
I found it difficult to verbalise how I felt, so I got up and wrote a long ode which helped me. It is a bit random in places as it was written straight off, no amendments. When I read it in the morning I was quite surprised by it. Now you may not ‘get it’ but it said how I was feeling at the time. Below is an extract.
I need to talk I need to tell
This is nothing like feeling unwell
It is different, it’s something no one can get
Unless you’re in it, water is wet
I’m desperate for a life I’m desperate for a rhyme
I don’t want to feel like this all of the time
I know this is not helpful, I really do know
That it’s 3 in the morning and there is nowhere to go
I don’t know what to do, I don’t know what to say
I just wish this thing would go away
The next morning I was on the phone to a support line. I just needed to talk.
They really helped. They listened, they understood, they didn’t judge.
I talked to a good friend. She listened, she understood, she didn’t judge.
I cancelled Tuesday, it is not often I do that – I slept, I talked to friends.
The following day, Wednesday, was another day, moving forwards.
Positivity returned – thank you to those who were there for me.