I’m a tad lost in the fog at the moment! Fibro fog that is.
One of my very best friends has a fabulous saying which sums up how I feel perfectly – “my head’s in a shed”. I have manged to miss three important occasions in recent weeks because I have entered into the wrong date on the calendar on my phone. It makes me look, and feel, very silly!
There is a wonderful resource, which I found in the waiting room while waiting for a physiotherapy appointment at the hospital, called The Pain Toolkit. I found it in booklet form but there is also a great website. It is a very practical guide to the self-management of pain, developed by Pete Moore, who himself suffers from persistent pain. You can read more about Pete and the development of the toolkit here.
There are 12 “tools” in the Pain Toolkit. The first one is being “Accept you have persistent pain…and then begin to move on.” It is, arguably, the most important and, in my experience, the hardest tool to implement!
I have changed the wording to fit my personal circumstances. For me it says – Accept you have JHMS and Fibromyalgia…and move on.
Or – Accept you have persistent pain, fatigue, digestive issues, foggy thinking…and move on.
The crucial word here is Accept. The difficult word here, for me, is Accept. There are lots of graphics and articles on the internet, in fact one popped up on my Facebook timeline just the other day, titled “Things Not to Say to Someone Who Has a Chronic Illness”.
· Snap out of it!
· It’s all in your head.
· It could be worse, at least you don’t have cancer.
· That’s not a real illness.
· Just think positive.
· Have you tried changing your diet?
· It will get better, just be patient.
· You need to exercise more.
· You take too many medications
As I read the graphic I realised that although I would never dream of saying these things to other people I say them to myself – regularly!
It is so easy to believe on the days when I am feeling well that I don’t have JHMS or Fibro. I can go several days or even weeks living in a bubble of denial and delusion which means when a flare occurs it’s crushing.
A metaphor I like to use to describe my situation is this. Imagine a deep dark well, the walls of which are dotted with footholds, to allow access, and scattered around the well, at differing depths, are some ledges. Two years ago I was at the bottom of the well, not coping with the pain and stress. In fact I was digging and making the well deeper! Over the past two years, with help from healthcare professionals and my family, I have managed to stop digging and climb to the top of the well. I have even been able to live for significant periods of time out in the sunlight. During these times I begin to forget about the existence of the well until one day I trip over the edge and fall back in. If I am lucky I don’t fall too far before I land on a ledge where I can sit for a while to get my bearings and start the process of climbing back out. Maybe, just maybe if I keep in mind that the well is always there I might avoid falling down it?