Friday, May 14, 2010


I haven't written in ten days because I have a migraine. For those of you who have ever had one you know what I am talking about; for those of you who have never had one you have no clue how it impacts your daily life. You just can't shake it or wish it away. If you are paying attention you may pick up the subtle clues that it is coming on. Personally, I don't pay close enough attention to the warning signs because all of a sudden I will realize that my behavior has changed and then I am past the point of recovery.

The first sign that I am protecting myself is when I start to wear ear plugs. I become sound sensitive. I will try to protect one side of my brain from the world assault of noise. I don't realize it but I will stand with one ear against a wall to buffer the noise. Then I will tilt my head and pull my shoulder up to close the gap when sound has a chance to enter. Then I start to put my finger in my ear. I then always reposition where I stand in the room if it is too loud. I then distance myself from anything or anyone that is loud. Then I find that I start to tear a napkin and put it in my ear. Then I start to carry real ear plugs with me and always have one in my ear. When I still feel decent I make an effort to hide the ear plugs .... then I don't care who sees them and you know I turned the corner.

The next sign is that my eyes get sensitive to light - all light. It again starts slowly and I don't realize that I am compromising my life. I notice that I am sitting somewhere where I am usually comfortable and now I am noticing one florescent light in the room. At first I just tilt my head down further so the top of my head covers the light. Then you notice that you arrange yourself so that the light is blocked by other objects. I sit in a chair and put myself at an angle to block a light. My back is always to the light. I start asking people to turn off a light. For a while I am careful with all florescent lights. They drain me, but I am good with natural light. Sunglasses are a must. Then all lights start to bother me. Then sunlight bothers me. You stop using the computer. You make all these decisions to shrink your world all the time and don't even know you are doing it. Then you realize that you need a dark room and NO light can come through the window. When you start to wear a washcloth over your eyes in the really dark room - you know you hit bottom.

However, I AM lucky because I do not get pain with the sound or light migraine. I am grateful for that but it might be why I miss the signs. I know that stress brings them on. I am obviously in an incredibly stressful situation. I know that I need sleep. I know that I need to eat healthy. I know I need to exercise. There are things that were preventable that I did not do. Also, there were things and situations that I had no control over. I am fully aware of all of this. I made some very deliberate choices, for very specific reasons, and I am paying the price. Now the hard part of paying the price for decisions I made is that I am the caregiver. It is not all about me, it is about my daughter.

Caregivers nor mothers can ever, ever get sick - it is just not allowed. I cannot begin to imagine how scary it must be in a foreign country (or anywhere) to have the person you count on to take care of you day in and day out not feel well. Not be there 100% like they usually are. When you really do not feel well you cannot fake it. It is something that you cannot hide. I will get better, but it has taken a toll on Monica and I am sorry for that. I hope that as she grows up she understands that I have done my best to take care of myself the best I can, but her life situation touches me as a mother deep in my soul in places that I didn't even know existed and that are raw with a protective instinct to take care of her (and my two boys). I will take care of her and put her interests in front of mine always - and sometimes I'll pay a price. All mother's try to learn balance and to put their oxygen mask on first. Not sure I can yet.

My body must have known it had to hang on until my dear Hope arrived. As many of you may know, Hope arrived on Mother's Day to spend our last week here together being a tourist and offering us support in our last days of treatment. She is my angel as I expressed before. I could get sick because I knew as a mom and caregiver that Hope could take care of Monica. She always helps me parent which is so wonderful. I need the team effort and Monica desperately needs her too. They have a fabulous relationship which is a bonus.

I am on the computer which is huge with the migraine. I am excited because this hopefully means I have turned the corner and can anticipate getting better. Maybe tomorrow I feel up to going outside even though it is 112 degrees (we have had the hottest March, April and now May on record!). I would love to be able to go shopping with Hope and Monica and be a tourist rather than lying in bed waiting to get better. I really want to eliminate all my stress and the blog is one area of stress. I will spend time writing when we get home. I do like to write and realize that our experience in India and the pictures and video we have taken are something that needs to be shared. I do not have the time to write nor energy while advocating treatment and being a dedicated caregiver to Monica. Her health situation is so unique and our experience is very different than all other patients it seems important to share.

We leave India on Monday, May 17th. It is time - we are ready.