We all have to live with something, whether it is pain, financial worries, job issues, mental health issues etc. The problem with the a lot of these stresses and daily battles is that these are all invisible to the general population. No one knows what you are going through internally, except for you. No one knows yourself better than you! With that in mind, what can you do to express your problems and get the help you need?
For me, I will use coloured bands to be a visual aid for others so they can see immediately the sort of day I am having. I have red, orange and green. They are simple yet effective. Today is a ‘red’ day so everyone knows I am in pain… a lot of pain and I need assistance. If people offer assistance I will not argue with them lol! Orange days are less of a struggle although not great. Orange is a lot of the time, although I have worn red for roughly a week now 😦 Orange doesn’t mean I am not in pain, it means I can manage it and cope. I will still accept help when offered but I do not need to ask for it all the time. Red is not OK and it does mean I have been not pacing well enough and doing too much. I am now in the mode of recouping and getting myself back into the green. These bands are very useful for myself, having to put on a red band does mean I am not looking after myself properly. Sometimes it is a flare up but I could have done stuff to prevent or make it less horrible.
I am still learning and getting to grips with pacing. It is something that most chronic illness people will need to do daily in order to manage their pain and symptoms. I have written about these bands and how they work for me before, over time these change slightly and you adapt to how you and your symptoms are. Now red days include PoTs symptoms and not just pain.
How do you communicate with others how you are doing and feeling? I would love to hear your devices for coping and sharing your days.