Defining and Prioritizing

I was on such a high when I found that I had a quantifiable way to tell people how I was feeling and to help myself make better decisions. I thought I would be able to take the emotion out of decisions with my new-found UNO card system.

In the UNO card system: 1,2,3 are red cards which means I am supposed to choose not to do anything. 4 and 5 are yellow, which means I have to choose based on how badly I want to do something or if I will get something positive from what I do. 6-9 are green, which means I should be able to choose to do things that I want to do. Seems pretty easy and straightforward. It's not! I can barely define what each number represents, let alone follow what I'm supposed to do within those boundaries.

I have learned that you can't take emotion out of these decisions. Prioritizing isn't always nice and is sometimes selfish. I am not used to choosing things that are best for me. I'm trying. A wise woman in my life explained to me that me getting better will make things better for my husband and kids. It's not selfish to make choices for myself, because it will get me back in the game for my family.

Over the past week that I have been trying to make better choices for me, several of my friends “needed” me. I almost got on a plane and flew to my friend who was going through a very difficult time in her life. I haven't flown once since my injury and was about to take a long flight halfway across the country to be there for my friend. I would probably have been no good to her when I got there, either. It didn't occur to me that I could probably do better for my friend from home until this wise woman in my life helped me to see that.

We have to make better choices for ourselves. When I'm in the red, it's so bad that I can't imagine doing anything, but I would get on a plane? When I'm in the yellow, I mostly choose things that are for other people, instead of preserving my precious tiny reserve of energy to hopefully hit the green tomorrow. When I'm in the green, I find myself looking for things to do around the house instead of resting and letting my brain heal.

It's been over 2 years since my head injury. I have these little epiphanies often, but each one of them seems to make things so much more clear. I am going to challenge myself to make better choices and to choose ME for a change. I have a fear in the back of my head all the time, “What if I never get better, and I waste my life resting?” It's a gamble, but I'm going to try gambling on the positive side for a while. Wish me luck!

Communication and UNO cards

I had a couple of interesting doctor visits this past week. I am officially done with my scheduled Bowen Therapy appointments. This was an alternative treatment to get my body balanced and re-booted to fight my post-concussion syndrome. She said that she has done all she can for me and to only call if I need her.

I saw a psychologist this week who specializes in brain injuries and post-concussion syndrome. She has explained to me that I need to rehabilitate the stress processing part of my brain and she has ways I can do that. I operate at about 75% of what I used to be on my best days. That is my baseline (my 100%). In order for me to begin this rehabilitation, I need to keep my level above 50% consistently.

She has given me ways to monitor my exertion levels and is starting to teach me how to communicate with everyone so that I can keep myself healthy enough to start this rehab. For home, I have a stack of UNO cards that I can put in a card holder showing what level I'm feeling at the moment. 1-3 in red, 4,5 in yellow and 6-9 in green. That way my family knows what I am up for and can know how to approach me. It helps me know what I can and can't do also.

I'm learning what affects me and what things I need to change. I hope I can be more honest with everyone about how I'm feeling and what I need as I learn these things. Please pray for me as I go through yet another new treatment. I have so much hope for this! Now that I'm learning what I really need to get better, I have to stay rested and learn to let others do things for me.

Second Wind

There are definite ups and downs in this fight against PCS. I waver through stages of “grief”. I am in total acceptance of it some days and looking for ways to live with it, and other days I examine all my symptoms and see what I can do to beat this thing (even if it's unbeatable).

My husband and I celebrated our 10 year anniversary by going out of town to Toronto for 5 days. I couldn't believe how far I could push my limits. Without the stresses of every day life, it was 3-4 hours before my symptoms reared their ugly heads.

When we got back into town, it was a huge wake up call for me. My limitations were set right back to 45 min – 1 hour before my symptoms kicked in. I've woken up with bad headaches with nausea and fatigue almost every day since I've been back. If I could live stress free and only experience physical limitations for 5 days, how can I make changes to my life here to accomplish some sense of “stress-free” every day?

I decided that I might need some help. I did some research and found a counselors group that takes my insurance and made an appointment with a psychologist. I see her next week to see if I can find ways to manage my stress more effectively. Some of you have said to me that this has helped you or that some of your neurologists have suggested that brain damage can include stress processing limitations. I am hoping that talking through things can help me to have less stress in my every day life and longer periods of time to function daily.

I also hired someone to come and clean my house. I can pick up the house pretty well and as a family we stay on top of the dishes and laundry, but my house just doesn't get cleaned, and it makes me crazy! It's one of those things that adds to my stress. I try to clean sometimes and it hurts my body so badly. I was vacuuming last week with a pounding, spinning head, and I paused to vomit when I just started laughing at myself. Why hadn't I been able to decide to get this help for myself?

It's so hard to look at myself and not only accept that I need help for some things, but that I'm worth it enough to be helped. I do our finances and am so tight with the money, trying to pay down debt and get to a place where we can start saving. It's crazy to me to try and spend some of that money on myself. A wise person in my life made me turn the situation around. She said, “If it was your husband, wouldn't you do everything you could, no matter what the cost?” She was right. It helped me to see that he just wants me to be better and the less I do to make that happen the worse he feels.

I hope these changes can give me longer periods of “ok” time where I can function somewhat normally. With school starting tomorrow, I know that will also take a lot of my stress away. What are some other suggestions for stress management and getting help that you guys have found?