Good evening readers,
Today I wanted to blog about communication and the tools that we can use to help others understand. Having an invisible illness, it can be very difficult to communicate to others how we are feeling or how much pain we are in. Overtime, I have been fortunate enough to have very understanding friends and family, this isn’t the case for everyone unfortunately. I do understand. There is also the constant headache of repeating yourself when you are asked by others ‘are you any better yet’ or ‘have you tried x,y,z?’
My answer? Stickman communications. Hannah Ensor has a way with words and also the images make me smile. I personally use the bands, key-ring cards and pacing fridge magnets. The bands I use for communication and recently I have had a few bad days.
Red days for me mean, I need help as it is a bad pain/fatigue day. My husband knows that he will have no resistance with helping me do things and I need rest. I am fiercely independent and even with EDS. I will usually be able to do most things on a ‘green’ day but taking into account that I need to pace ALWAYS. Otherwise I will end up doing my normal ‘boom and bust’. ‘Amber’ days are the most common. I will need help with certain things but can manage a lot on my own. Again, always pacing!!! My friends use these as a guide also as to how i’m feeling. They understand my pain and how i’m feeling just by the colour of the band, no questions asked.
Particularly bad ‘red’ days my hubby will run hot baths, microwave wheat bags, make cups of tea and cuddles are on tap. These are the days when pacing can include using my wheelchair. I also use the pacing fridge magnets to plan my days when they are hard.
This set can be purchased here. I highly recommend them. Even I ‘a pacing advocate’ will neglect certain thing overtime. Life takes over and we all do it i’m sure. Start pushing things too much and end up in a mess? I know I do… These help me reset myself and to get me back into looking after myself a lot quicker.
Now the keyring cards I keep on me as standby, for when meeting new people and explaining things quickly is needed. For example, going to a restaurant and having to explain your lactose intolerant, can’t eat certain things, I show my card.
No long explanation required, all simply written so easy to understand.
Now lastly, I am leaving you a link to a really great letter written. This was published in the HMSA charities journal many years ago but I believe still in relevant today.http://hypermobility.org/a-letter-to-a-loved-one/
Your feedback is welcome as always and I would love to hear your suggestions on how you find it best to communicate with others ❤