The writer in me really enjoys having two random things to combine in a post, and today gives me the satisfaction of being able to do this.
Both of the illnesses I have are pain disorders: One is Chronic Myofascial Pain Syndrome (CMPS). If I lived in the USA I could add ‘stage four’ at this point (Stage four is the point of no return, where the condition affects many areas of life including voice and vision). The other is a later addition that is quite common and an annoyance that complicates the CMPS – Fibromyalgia.
I also have a couple of other things that have their own separate awareness days – whoopy-doo!
We’re also able to hug from next Monday…..
What has that got to do with this awareness day I hear you say!?
Well, I’ll start by saying that I will be hiding away for a couple of weeks until the extroverts have got the hugging out of their system!
Why? Because over a year ago, people who knew me well would remember to ask me before hugging. I fear that has now been forgotten.
For me, hugging can be painful, and sometimes it can result in spectacular muscle spasms. (Can you see the connection now?!)
I’ve always said that the permission to hug always lies with the receiver – something to remember even without a chronic pain condition. For some, a year with few or no hugs will make this more than a little overwhelming – we need to recognise that and ask first.
For people with a disability that is obvious – such as mine (I use a wheelchair), permission to touch often goes out of the window, with people often approaching me like you would a child:
Arm stroking is top of the list, followed by arm or shoulder patting. I’ve had my head stroked on occasion and my hand held. All without permission.
I’ve also had some people come up behind me, shimmy to the side and give me a sideways hug before I realise they are there – making me startle. This is something that is very painful. At least my wheelchair prevents full frontal hugs!
In my family we have a phrase we use frequently as a sign off on messages: ‘gentle hugs’ (Many in my birth family have Fibromyalgia), and in turn I use it with others who appreciate that sentiment.
For the record – I do like hugs, especially the gentle variety. But because I am still clinically vulnerable – I would be careful about the amount of hugs anyway. So please don’t be offended if I decline one.
As I said – May 12th is an awareness day. And now you are aware why hugging can be an issue for many with a chronic illness.
If you want to read more on hugging and children with additional needs, my colleague and partner in crime, Mark Arnold, has written a longer post on his Additional Needs Blogfather site