Crafter Tie Dying event

A few days ago I held another crafter get together event at my home. I have a lot of friends who are all crafters. Most all of us have some kind of physical disability, but not all. So we get together once a month or so and craft together and show off our creations. It has been a lot of fun. The latest crafter day event was Tie Dying. Boy, was it fun!!

First we all sorted through our shirts and stuff while the guys helped set up a couple of tables outside for us to do the dying part. We soaked our shirts and then folder, tied and otherwise did what we thought would be a good patern idea. Then we started with a color of dye and went on dying various colors into various sections of our shirts, socks, and such. At the end, each of our tie dyed treasures was in a plastic bag to set and everything was cleaned up. The whole event took less than 4 hours. It was SO MUCH FUN!

Then I came inside the house to relax. I noticed that as the day went on, my back pain was getting much worse, as with my fibromyalgia pain. I had some ice water, my puppies, and tv. Later I took a hot bath with a good book to help relax my back pain. It helped some.

This is what it often is to be a zebra. It means that you pay a price to have such good fun. You can wake up feeling great and go to feeling horrible in a matter of hours or minutes. During my peak time of my infusion month, (begins at my IVIG ) I usually feel 'normal' and have low enough pain that I can get out and do things. But even then I usually get about 4 hours, sometimes more, sometimes less. During my bad days, pain and fatigue rule my days.

So, as a zebra I have to plan things, such as the crafter meetings. So I planned this event to be two weeks after my infusion when I knew that usually I feel really good. However, even during the 'good' time of the month, I still need to be careful about what I do. And, I knew that I over-did it, meaing I did more standing, sitting, leaning over the table, the buckets and such. I also know that I didn't pace my energy very well, I just went for it and had fun with everyone else.

See, my CVID seems to effect and restrict everything about my life. My energy levels are directly related to the condition of my health and my IgG count. When there are high, such as after my infusion, then I have a lot of energy. My energy and pain are usually at their worse seven to ten days before my next IVIG, or when my IgG level is very low. If I have energy and little pain, then I can typically spend 4 hours away from home and feeling great. If I go longer- I will crash. This is what happened after the tie dying event.

It is two days later and I am still very stiff and sore, My body aches all over and my energy doesn't last very long. Doing simple chores like bathing, cleaning dishes, cooking and such are extrememly difficult now. So I am doing what I can, and letting my home helper do the rest. Slowly I am recuperating. In a few more days I will be back to feeling great again. But I gladly pay this price in order to do things and have fun in my life.

Fellow zebras and family members, please remember to do what you enjoy. Be happy. Make your life rich and full. Sometimes this may result in having to rest for a while- but the memories you make, the smiles you had and the laughter you share are so much more important than you can believe.

Much love to all in my dazzle!