Dealing with unexpected changes is a challenge most people would associate with autistic spectrum disorders (I love the illustration about it in this article: http://www.huffingtonpost.com/carrie-contey-phd/the-tendril-theory_b_7984160.html ) or perhaps with anxiety. But did you know that many people with conditions which cause fatigue can also struggle with new or unexpected situations?
My ability to cope with unexpected changes varies hugely with fatigue levels and brain fog. Some days even a 'would you like to pop round for dinner' is something I can't get my head around - other times it's an instant yes, because my fatigue is lower so my coping ability is much higher
These are some of the issues an unexpected change of plan can raise:
- I haven't planned my day to save energy for the new thing. I don't know whether I will be able to get through it without majorly upsetting my symptoms, nor have I planned the necessary recovery time afterwards. And I don't know if my schedule will allow for taking tomorrow off.
- Is it within a safe driving distance for me or do I need to arrange a lift? If I need a lift, who is driving and which of those cars has a boot my wheels can fit in? And what happens if I can't cope and need to leave early?
- I don't know if the venue will be accessible. Will the lovely evening stroll have styles or narrow gates? Will the restaurant have step free access and a loo? Will I be able to lie down if I need to?
- I don't know if I have the right kit with me (for example I have different levels of compression wear, and need the full on custom made entire outfit for being upright for long periods with minimal symptoms. So I might need to change my outfit...but do I have the energy and joint stability to change compression wear? - Do I even have the chance to go home and change it? Do I have enough cooling vest inserts ready? And do I have the right wheelchair/mobility aids with me?)
- I don't know who else is going. I have a handful of friends and family who have become experts: seen me when I'm really bad and don't flap. They know what to do (for example, how to help me realign a wrist, or when to suggest I lie down). And a slightly larger group who mostly get it, but might get a bit freaked out at some things. If a group doesn't have any experts I will need to come up with back-up plans. (Keyring cards help for this, but don't entirely solve the problem) - this particular issue needs quite a lot of brain power and time before an event to sort out.
I have learnt to take several breaths before reacting. It's not the end of the world even if in that split second it feels like it.
The vast majority of these questions have sensible answers which will make things do-able, but it takes time and brainpower for me to work out the answers. If an outing or event is suggested at short notice. ready to happen in an hour, then I may well not be able to go. Not because the trip is a physical impossibility, but because I don't have the time to sort out the things that would make it possible.
So if you are with me when a spontaneous happening is suggested, and I go quiet or am very unenthusiastic, it doesn't mean I don't want to go, it usually means that I do want to go, but need to time to process things first.
So please be patient, and help me find the answers if needed, and give me as much advance warning as possible so I can make sure I am prepared and can make the most of the event.