I was reading a post on a Facebook group that I follow and it has made me think. The person posting has obviously been struggling with this journey and expressing frustration perhaps because they have been reading all about how people are doing so well. People who say they are doing “PD Warrior” or other intensive programmes, plus a number of other activities to be the best they can be in managing their condition. He struggles with perhaps the perceived ‘over positivity’ of some contributors to that page. Well, that is the way I would put it. Not his exact words at all, but that seems to be the general flavour.
But I can absolutely get what they are talking about. Reading their post there are some things I commented on. To me, it’s clear to see that they are struggling at the moment and perhaps have for some time. It is sometimes difficult isn’t it, to see and hear of others that are doing things like PD Warrior or other intensive programmes when it seems that sometimes just taking a walk to the letterbox is a big deal!
Some reading their post might view their post as negative. I, however, feel it is far from negative in that they are actually brave enough to recognise that they are struggling and to share that with people. I write a blog about my own journey with Parkinson’s which is www.parkiesandme.com my journey with Parkinson’s. I recommended that they might like to have a look and see if there is anything there that resonates with them. The reason I am recommending that they have a look at my blog is because, while I try to look on the positives in my life as much as possible, at times things don’t feel so positive and when it feels less than positive for me, I own it and put down my true feelings. There is no value in pretending that – with all the will in the world – this is not a huge deal and to acknowledge that we have a serious condition and that at times it all feels too hard. At the moment I am feeling a bit down in the dumps because not only do I have Parkinson’s, but I have arthritis and because of that just over a year ago I had a total knee replacement on my right side. I also had to have a major back operation in February this year and still in recovery from that. My back and my knee are still sore and part of that is probably because I have put on a significant amount of weight. However, as my husband reminds me, I have not been able to exercise for three years due to pain and stiffness. That makes it hard to mobilise and to stay positive at times. Again, the best thing any of us can do for ourselves is admitting how we feel and not trying to be falsely positive when we feel anything but. This Parkinson’s life is not an easy one and I feel we should all acknowledge that from time to time and that it sucks being the ones chosen to carry this burden. I hope they have good support around them and maybe tomorrow they can take a step back, take a deep breath and think of any positives to put in the plus column, so that everything in life is not negative.
Sometimes, it is a struggle to find the positives, it may be small things like a nice garden, watching children play, winning at a game of cards, having a chat to someone or enjoying a funny TV programme. Hopefully, we can all find some positives in our lives. To me, a positive is that they have stood up and said, ‘Hey, this is not easy and I am struggling’ in acknowledging this, rather than pretending it is not how they feel is brave and honest and they are to be admired for showing the strength to show their vulnerability.
Here’s some thoughts from my podcast.
My journey with Parkinsons 