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Planning for Chistmas

Christmas is upon us!

And now is when we are all making our Christmas plans. You all will have to make your own decisions about how much you plan to do and not do. It is of course up to you.

But I want to encourage you all to start thinking carefully about it now. Think about what you did in past years, think about what your state of health was at that time, and then think about how you felt after Christmas. Connect your activity and health level to the affect that Christmas had on you.

Now think about what your health is like this year. Is it worse than previous years? Is it better?

If your health is worse, please consider that the affect of doing the same things you did in the past will also be worse.

If your health is now better, don’t be too confident, remember that days like Christmas are complete unknowns outside of our routines so we don’t have a good measure of how the activity will affect us. What’s more, Christmas is full of so much emotion that it is very hard to watch your energy level and stop when you need to.

We are emotional creatures, not creatures of logic and we feed off of emotion. So it is very difficult to make logical decisions about your energy limits in the middle of an emotional experience. It is physically difficult to access the logical part of your brain that analyzes your energy levels and would tell you to stop when it is full of emotion.

So I want to encourage everyone to think about all of this and start deciding what you are going to do on Christmas now, coming from a place of logic. Make plans and then follow them on Christmas.

Only you can decide what is right for you.

But remember how horrible crashing is. You could very well get worse - possibly in a state that resembles hell- for months or years or permanently if you go over your limits and crash really badly. Is that worth it?

Also remember that when you go over your limits your mind becomes dull and numb and you won’t have the experience that you so desperately crave because your mind will just start shutting down. You will feel less, be able to think less clearly, interact with your family and friends less clearly. And you will likely forget most of what happened.

It’s just not worth going over your limits to try to have a singular experience. You can’t create lasting memories when you go over your limits because your brain shuts down. And the price you pay afterwards will take so much away from your life. Quality of life is the most important thing, and one day of foggy memories is not worth months or a permanent loss of your quality of life.

Think about the things you are able to do every day right now. And picture not being able to do those things anymore for months, years, or permanently. Is that worth one day of foggy memories?

Again, you have to decide, it is your life and it is up to you, but I want to encourage everyone to decide to do less and avoid crashing on Christmas.

Last Christmas I thought it would be ok to have my whole extended family into my room to open all the presents I got for each of them and put so much thought into (I love getting people presents). It lasted about 1 hour and it was so much fun, but it made me crash and a year later, I still have not gotten back to the health I had before that 1 hour of fun. I really wish I had not done that. There are things I could do everyday before last Christmas that I can no longer do. That’s 365 days of being more restricted and living less. All for 1 hour.

I have thought about having everyone into my room for 5 minutes and having them all open their presents at once and then quickly leaving, but I have decided that it’s not worth the risk. There are too many things I want to be able to do everyday and seeing people open presents for 5 minutes is not worth loosing my ability to do the few things I can still do in bed.

Please follow me, and live this Christmas without crashing. If that means you are alone, well I will be alone too, all day. If that means only spending an hour with your family, then just feel grateful that you are able to spend that much time. If you don’t expect to have more than you are capable of this Christmas, you won’t wind up let down.

So prepare yourself now for what you decide to do, and set your expectations and then rejoice in doing what you planned to do and having the experience you expected to have.

Remember, we are alone, but we are alone together. I will be alone here with all of you, thinking of my family and remembering past Christmases and wishing I could be the person I am and want to be.

But I will stick to my plan because I don’t want to loose my ability to listen to music, or type at all to text what I need to my caregivers, or write to you all here, or loose my ability to make photographs.

Please join me this year and live a crash free Christmas, whatever that means to you. Let’s join hands and live less on Christmas so we can live more for the whole rest of the year.



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