"Pretending you're ok is easier than explaining to everyone why you're not"
I find myself doing this --- the "pretending I'm ok" part all of the time. It's a struggle to understand why it is this way, but it is. The pretending, in order to appear ok, is not easy by any stretch. No, it requires a lot of work -- organizing, planning, scheduling (and this means sticking to it!), but in the end is a lot easier than trying to explain to others why I am not ok.
For regular, simple outings, such as grocery shopping, church or appts. etc., planning and preparation has to be done with attention to the most minute of details. Larger scale events have to be assessed on an event-by-event basis. For the everyday outings though, planning goes something like this:
Planning / Accepting
- The venue needs to be assessed / scoped out
- Will there be a lot of standing?
- If so, are there ways to modify this?
- Are there chairs to sit down?
- Are there breaks incorporated into the event or is it a start-to-finish type of event?
- If there aren't scheduled breaks, can it be modified to allow for breaks?
- Is there a lot of walking to get to the venue?
- How long will it be?
- A rest day needs to be planned for the day before which means, I must be ready to go two days before
- Try to stick to pre scheduled events -- nothing impromptu
- On the day of the event, schedule appropriate time into getting ready. ie Get up / shower / rest / eat breakfast / rest / get dressed / rest / do hair / rest --- you get the picture
- Arrive ahead of time to allow for a rest
- Listen to my body and rest when needed. This may mean sitting down when it's expected to stand. It may mean excusing myself from the event to find a chair and sit down. Whatever my body is telling me to do, it must be listened to
- No other events planned for the remainder of the day after the event is over. None.
- Resting for the remainder of the day
- A down day or day of rest scheduled for the day after
Strictly following these steps allows me to (usually) take part in an event. So what's the big deal? As long as we are organized and plan carefully, all is well. Problem solved, right?
While this pretending, tweaking and accommodating may make it easier short term, it creates bigger problems down the road. Since we are out and about, we appear fine to everyone else. Nobody would ever guess all that we've gone through in order to go on that simple outing. They think we're able to be out today, so assume we must either be better or else we're faking the severity of our illness. Sometimes then, when it's a bigger event or we are just to ill to go out, they can't understand why we were unable to to take part this time.
The more accommodating and tweaking we do, the more it's expected and the more difficult it becomes.
We need to change this. We need to stop with the pretending.
We need to move forward as we strive to Seek Balance, Despite the Chaos