Today we made plans to go for a visit to the beach for New Years Day. The weather is amazing. The beach is so close by. But we didn’t go.

Another plan that hasn’t gone to plan!

A common occurrence for the Autoimmune and chronically ill. So very common that it is almost unremarkable.

Why didn’t it happen?

For some time now I have been struggling with back, hip, feet and nerve pain. Probably close to 5 months at this painful level. Very little sleep. Barely able to walk/move. Feeling like hot spikes are driven into my joints and feet. Tossing and turning to try and find a position that allows a few moments to sleep all night is exhausting. It has become the normal for me for awhile now, on top of every other challenge.

And then on New Years Eve I fell when I could not feel or control my leg. A relatively small fall compared to my others, but enough to send me more pain. And then spasticity overnight and my body feels like it is being pulled tight like a overwound guitar string…

… so today no beach.

What is the lesson at the bottom of these painful places? What can I take away from this? I search for meaning constantly.

Well… I realized today, as I sit nursing my bruises and pains, that I no longer have the luxury of planning. It is more like keen hoping. The more I plan the more it can seem like a mirage.

If I get hung up on being able to do things on designated days like birthdays or NewYear’sDay than I will always set myself up for emotional pain and disappointment.

If I take the wishful hoping approach and then if it all goes according to plan than I can feel a unique sense of achievement!

I have begun to realize there really isn’t one day for celebrating and that celebrating can only happen on those days. Birthdays can be celebrated days, even weeks later. As long as the love and feelings are there.

The beach will be there another day too. And I will try to take in every moment with joy.

Unlike the rest of the world I cannot plan with these diseases, I must give way to them. Although I will never like it. They have the final say and I must patiently wait for when I can do what I would like to do.

I will celebrate and enjoy … just maybe not when the rest of the world can and will.

That’s why I am especially grateful for those who understand and who will celebrate with me when I can. They are also showing as much patience and strength as me. They are truly remarkable.

As I shared this revelation with hubby I also told him that I would do my best to truly accept this on every level.

And I will do my best.

I will do my best to not get hung up on certain days and certain events. I will do my best.

I will do my best to seize the chances and enjoy whatever events when I can. When I am able. Even if they are few and far between.

In time I hope that this will become habit and become normal. With time, and with the right people around, hopefully there will be special days again.

Gentle hugs,


3 thoughts on “Celebrating

  1. Happy New Year from Indiana. We are -22 Celsius with snow. Brrr. The beach sounds great but like you I am unable to go today. Unlike you I did not plan to go. See we each have circumstances preventing our desire. Neither of our circumstances are of our own making. I hope like summer in Indiana your beach comes soon.


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