I read today another PD person’s Blog about feeling less than positive and her symptoms getting on top of her for the last few days or so. She is usually a very positive person, but she is having a bad run of it at present and she was apologising for writing a less than positive post. In her eyes that is!
I sent her a comment as follows:
“Hi Sue, from another Sue. I’m not sure if you read my Blog, but your words struck a chord with me today. Putting your hand up and saying ‘this is hard’ and ‘I’m not coping’ is exactly what people need to hear! Just saying that not just to yourself but letting others know it, is inspirational in itself. I have written a few similar ones myself like ‘Today I cried’ which you might like to read http://www.parkiesandme.com. You’re doing an amazing job. Sending much love.”
I absolutely believe that if anyone is writing a Blog about their experiences with Parkinson’s that it has much less value if it is always positive. I would go as far as to say that if someone is always positive in their Blog, that it is often false positivity. How can anyone with such a condition as ours always be positive? We have been dealt a pretty shitty health hand and I’m sure anyone living with PD as either a PWP or their spouse/friend etc has – and is entitled to – some ‘negativity’. Not that I think saying you are not coping would in my book necessarily be a negative thing. I feel that we – certainly I – need to to acknowledge the sheer shittyness of this condition! In acknowledging it, I think we send a good message to others and ourselves that feeling overwhelmed and upset, anxious or depressed is perfectly understandable.
If we are always upbeat and positive in our Blogs and in our lives it can give a false impression of our lives. It can create for others an unhealthy expectation that they ‘should’ (I hate that word) be doing better themselves if they give in and experience the crappy feelings that can come with this unwanted gift in our lives. If part of the reason for writing a Blog in the first place is to inform others of what we experience and how we manage it, then it needs to be acknowledged when we are not having a great time of it. As I say to my patients when they are having a down day and crying and apologising for crying, “You don’t have to apologise because this is getting to you, this is a big thing and I would be more worried if you didn’t cry sometimes!” “You haven’t just stubbed your toe or some other minor injury, you have a significant condition that you are trying to deal with!”
So, it’s OK to not be OK sometimes.
It’s OK to acknowledge it, both to ourselves and others.
Don’t weigh yourself down with ‘shoulds’ like “I should be managing better”
It’s OK to ask for help and to lean on someone for support if you need to.
You can’t always be brave and you don’t have to be.
Work through your feelings and acknowledge them and in doing so, you might feel better soon.
If you find you are having more ‘downs’ than ‘ups’ see your GP or specialist and see if they can help. It may be that you need medication for anxiety or depression or counselling.
Whatever is making you feel not so good about life needs to be worked through, find someone to help you.
Find a support network you know and trust will support you. If you live in Australia or New Zealand, this is the one I belong to AUST & NZ PARKINSON’S SUPPORT AND CHAT they have become like my online family and whether happy, sad or somewhere in between they always give support.
You are not alone. Reach out to me, if I can help or anyone else with PD, because we will know what it’s like for you.