Monday, December 26, 2011

Unwanted Light Partner

My sister Pam has had a headache every day and has been out of work since her accident in October. After many doctor visits, numerous tests and continued therapy, she is scheduled to go back to work at the end of January.

It’s been a very awkward time for her as she has tried to work her way through her extreme photophobia. It’s also been helpful for me as we’ve been able to share information and discuss what eases some of her symptoms based on my experiences. Of course the holidays put a whole different wrinkle into the photophobia thing, but this has been a long short road for her and she probably still has a way to go.

She recently told me about a side comment I made to her that I barely even remember making after her ordeal started. She was excited to be driving on a cloudy day as opposed to all of the sunny days we were having right after her accident. I understood exactly what she was talking about and I don't remember telling her to “wait until it rains”, but it sounds like something I would said to her.

I guess looking back from her perspective at the time, it would be hard to see how the rain would be much different than a cloudy day. Sure she had heard my stories about the rain making my head feel worse, but it is a tough concept to really understand unless it’s something you’ve experienced. Well I really am sorry to say that after the first rain, she let me know that she completely understood what I meant by that off handed comment.

I’ve been trying to give her the little tidbits that have helped me with my Migraines along her most recent journey. Some of it has been given with that same ‘sisterly’ love as the rain remark, but it always has the undertone of how serious she needs to take different things now that things have changed for her. We are still hopeful that she will get better as her brain heals from the accident, but preparing for whatever is necessary.

While talking with Pam today, I could feel how frustrating her Christmas was with her in-laws. Although she had some good moments with them, she also had times when she wanted to and quite frankly, should have left.

With lights all over the place for the holidays, she found it very difficult to find good relief. Although she had turned some of the lights down, inevitably, one of the many BILs would come along and turn them all of the way up on her again. She also complained about having the bright lighting around the dining room table which was also accentuated by the extra tree and banister lighting.

This was the point in which I took advantage of her and got on my soapbox. She’s heard my speeches before and even seen me in action. I reminded her that when I was at her house for Thanksgiving, I turned down the lights in more than one room and more than once. You do what you have to do.

I also had to leave the dining room a few times as different people were testing the flashes on their cameras. Ok, they were probably taking pictures at the same time all of the flashing was going on, but I refused to stay in the room and keep subjecting myself to the nasty flashing. I also reminded her that I spent quite a bit of time sitting in her nice dark hallway on that day while talking to different people.

After recounting my story, I let her know that I understand what she is going through with the lighting. There are times you can’t control different lighting aspects and other times you can. When you have difficulties controlling the lighting, you have to be prepared to help yourself in any way you can.

It’s easier said than done, but she is beginning to understand that she has to do what is best for her. She could have left the room and said she even thought about leaving altogether. We talked about eating in a different light friendly room or just going someplace else in the house to spend the time where she could get her piece of mind back.

I told her that lights are more cumulative for me. The longer I am in bad lighting; my face starts to go numb, my head gets worse, the harder it is to treat and the slower it takes to go away. She said she felt exactly the same way about the harsh prolonged light exposure including the numb face.

At this point, I took a step higher on my soapbox. I let her know that she is the only one that can take care of her. She needs to be prepared for any situation and needs to start getting ready now for when she returns to work at the end of January. I continued lecturing her that as bad as it might have been, if she needed to leave to take care of herself, then she should have left (they brought two cars with them). Her husband could have taken care of the kids during the rest of the party, but she should not keep subjecting herself to things that are not good for her.

Although I have found hats work better for me than sunglasses with the lights, Pam likes sunglasses better. In spite of this, when she goes back to work, she won’t have the same luxury of wearing sunglasses as much as she might need to, but hats might work out better for her during her work time so she needs to figure that out now. Sunglasses at her work would be more of a preventative measure and may make it too difficult for her to see everything she needs to while trying to perform her duties, but hats should be ok. I told her she needs to start preparing for this change now as best she can.

She knows what she needs to do to get ready to return back to work. She continues with physical therapy and says she does feel a little better all of the time, but finds it hard to deal with the type of setbacks like at her in-laws. I totally understand how she feels.

It's been very strange watching someone else evolve in their Migraine / headache experiences and increase their knowledge in this way. She has gotten stronger and says I am frequently in her head (that’s kind of scary) where she gets some strength to do things she would never do before like turning down the lights at her in-laws or wearing her sunglasses anywhere she feels necessary even if it is indoors and not caring what other people may think.

I feel bad that we have been sharing this so often lately and wish we had something more fun to share, but I hope I have been able to give her a shorter learning curve through my experiences. This stuff doesn’t make sense, but at least she knows she is not alone.

It has been tough watching my sister having head pain every day, but it's also weird to have someone there who really understands things I’ve been going through too. I hope not to have her by my side through this journey much longer, but am glad I am there to help guide her through this time. It just still makes no sense to me how lights can hurt so much…


No comments: