Tuesday, January 10, 2012


Last night I couldn't sleep, so much swimming in my head. This recent flare up has been intense for me, coming in just on the tails of the last one which landed me in the hospital in San Jose for a few days, and amidst my life being in a swirl of dramas and rough times. I've had new symptoms arise that aren't easy for me to incorporate into my daily life or even talk about. My eyes are getting worse, not focusing very well and hurting all the time, and I believe the strabismus that I had surgery for 10 years ago is coming back. I want to close my eyes all the time but I don't want to miss a thing. I feel sort of like I have toothpicks painfully propping up my eyelids. I lay awake at night worrying and wondering what will happen next. So I stayed up last night looking up anything I could think of to find some indication of what my quality of life will be like with the possible diagnoses I've had presented to me over the years. I want to plan for the future. I don't want to fall behind on my dreams every time this happens.

One thing I found last night that really helped me is Christine Miserandino's Spoon Theory. I've read this before but it really helped me to read it again last night because this morning I woke up with not as many spoons as I'd like to have at the start of my day. And I had stuff to get done this morning. All day I felt like I was using them up too fast until finally I just cracked. I got very, very angry and all that was going on around me was normal mundane happenings of life in my house. But I got overwhelmed, overstimulated and just felt like I was a seething volcano finally giving into the pressure and exploding. I just suddenly wanted to be all alone, with no commitments and no responsibilities except soothing myself for a little while. I explained the spoon theory to Jamie and Maia to try to explain where I was coming from.

I find myself scoping out local hospitals. I want a plan of action just in case something happens and I end up in one again. I am scared that my household will not be able to function without me. I think way too much about what I can do to prep my family for losing me for a few days, just in case. I always want an emergency plan, a plan "b" just in case...

I found this list: 36 Easy things that you can do to make the life of your chronically ill friend a bit better. It's good food for thought, all the way through all of the comments even. It made me think about all the times my partner has said "what can I do to help?" and all the friends who have showed support and said to call if I ever needed anything. I have a hard time asking for help and faced with you holding your offer out to me, I will probably back down and say I am fine. But, really, here's my list...

1. Leaving my house means counting my spoons and hoping I have enough to make it home. Come visit me at my house or give me a ride to something we're both going to. Driving is hard for me and public transit can be tiring and lonely without a friend to take it with.

2. If I do go into the hospital again, there are some things you could do for me and/ or my family that would be amazing:
-Bring me some real food or coffee (seriously!)
-Bring pillows, the beds are horrific
-Visit and play a board game or something with me (just please don't visit and stare at me like you're terrified and go on and on about how you wish you could do something, please, just distract me...)
-Bring me new art supplies like colored pencils
-Take my dog for a walk
-Hang out with my kids, check in on them
-Feed my kids and Jamie a nice dinner (they are used to me cooking dinner for them)

3. Take me out dancing. Even if it hurts too much to dance, I like to watch others dance. Don't tell me I how awful my dancing is when the pain messes up my moves, just boogie with me.

4. Meet me for coffee, send me a card or something, help me feel less alone.

5. Go on a walk with me. I need the exercise and I am often scared to go on a walk alone.

There's probably more things that would be helpful, but 5 is a good enough list for now. You have other friends with chronic illness. Read that list of 36 things and think about what you other friend would like. :)

I want a diagnosis. I don't have one yet. I have theories. I might get better or I might get worse. But today I will make the best of the spoons I've got. And every day after I will do the same.

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