This article was posted on "Young Stroke Survivors" FB page and I really liked it. I'm nearly seven yeas out and fatigue is still a major problem for me. I have to plan my day around it. But my biggest question is whether house work is considered both mental and physical. That could be my new excuse for not doing it!!

FATIGUE

A nearly universal complaint that people have with head injury is fatigue. Although fatigue decreases over time, it is a very persistent problem. Many patients recover from nearly all of their other deficits, only to have fatigue prevent them from returning to work full time (they go back, but at a part-time level). A lot of people are used to working 50, sometimes even 60, hours a week. In addition to a 9 to 5 job, they come home and work in the home, or they have a second job. Fatigue from a head injury drastically alters their lifestyle.

Mental versus Physical Fatigue

There are two types of fatigue: physical fatigue and mental fatigue. "Physical" refers to doing some sort of physical labor such as mowing the lawn or working in a flower garden. Just after a head injury, physical fatigue may be troublesome. For example, if you're relearning to walk, the amount of effort it requires to relearn to coordinate the muscles and build up strength is going to be substantial. For most people, physical fatigue tends to go away after 6 months. What surprises people with a head injury is the mental fatigue. For example, you could spend all day in your yard pulling out weeds and not feel tired from it, but an hour of balancing the checkbook will leave you exhausted. This is mental fatigue, and tends to go on for long periods of time. Let's use another analogy. Think of owning a car that you can only fill with half a tank of gas. You can now only go half as far as you used to. When you run out of gas, the engine stops. With mental fatigue, it's as if the brain runs out of chemicals and just shuts down.

Why does this occur? Let's look at the brain as a big phone line system. We make a daily call from Chicago to New York City and it’s a direct line. If the line breaks, you lose the connection. The phone company is prepared, however; they realize that phone lines break, so they've programmed their computers to reroute phone calls. As a result, a phone call from Chicago to New York may have to go to St. Louis, Pittsburgh, and then to New York. It's no longer a direct call--we've added 3 more connections. More time and energy is needed to send the same information. This analogy seems to make sense. People with a head injury tell me that it takes much more effort to get the same answer.

Does fatigue get better over time? For most, it does. Does it go away completely? For most, it does not. At first, people may work for 3 hours and then they're beat. Eventually, they work for 4 hours, then 5 hours, then 6. I have many people who finally work 8 hours a day, but are extremely tired in the evenings and need the weekend to recover. If you become physically ill with a cold, or have surgery, this fatigue disorder briefly comes back with a vengeance.

What Can I Do?

Most people tend to get fatigued in the afternoon, generally around 2:00 or 3:00. One suggestion--if you're going to do something that is stressful or hard, do it in the morning. Your mind will be a lot clearer in the morning and less prone to making mistakes. Realize that fatigue will affect your memory. If you learn information when you are fresh, it is more likely to stay with you. If you stay up late studying for a big exam, you will have more problems trying to recall this information the next day.

Exercise improves your ability to think. This seems pretty obvious, but for individuals with head injury, it becomes crucial. If your doctor has cleared you to do exercise, you should make a conscious effort to do it. Why? Even though the brain weighs less than 5% of the entire body, it uses 30% of the oxygen in the body, and probably the same amount of glucose (which is the energy that runs your body). If we use a car analogy, a clogged air filter and gunked up carburetor will not allow full power. With exercise, you get more oxygen into your blood system. Also, for people who have chronic pain syndromes, some types of exercise are very beneficial. For example, swimming is a very good exercise for people who have neck or back pain. Always talk with your doctor about what exercise works best for you.

Diet is another important consideration. When I say "diet", I don't necessarily mean to lose weight. It's important to eat 3 good meals a day. In our rushed society, we'll eat a doughnut, have some coffee, and run off to work. That's not a very good diet. The sugar that you get from a doughnut or the caffeine from coffee gives you a brief burst of energy, but that energy doesn’t last. We've all heard of a "sugar buzz." Children are very prone to this. The same thing occurs in adults. The problem with sugar is that you "roller coaster"--you get that burst of energy but you come crashing down. The trick is to have a constant supply of energy to the brain.

You need to gradually increase your stamina. Going from not working to working 40 hours a week is very stressful. For the head-injured individual, this is nearly impossible. You must give the brain time to build a tolerance to fatigue. A common approach to this problem is by having people gradually return to work. You might start off with part-time, beginning with 1 to 3 hours on returning to work. Gradually, add hours only as you can tolerate it. What's the problem with this? Most employers only want you 100%. They want you there 40 hours or they don't want you there at all. Many employers are beginning to realize that this is a discriminatory policy. A head injury program will work with the employer. Businesses are beginning to see that good employees are hard to come by. If you can't return to work, however, volunteering is a good means of building job skills. This will also help to decrease fatigue and will improve self-esteem.
TRAUMATIC BRAIN INJURY SURVIVAL GUIDEBy Dr. Glen Johnson, Clinical Neuropsychologist
 

Davis County Schools Foundation

A while ago our family was asked to be a part of a back to school shopping spree given by the Davis School Foundation. I'm not going to lie, I felt a bit sheepish for accepting. I know that there are many children less fortunate than mine and, frankly, we seemed undeserving.
I talked to my sister who works for another district and she assured me that it was not only for financial difficulties and that I should accept with no reservations. I also spoke with a few others, including Robert, who reminded me that aside from the financial, (which is still going on) think of the things my kids miss out on. I can not go on field trips, can't volunteer in their classes,  can't walk with them to and from school, and when they get home it is usually to an exhausted mom who can barely sit up long enough to help with homework. Admittedly, I love reading time because it can be done on the couch or on my bed and usually involves snuggling.
So I sent them on the shopping spree, with just a hint of reluctance. Parents were not allowed so I had to wait at home. Again, my saintly sister stepped in and offered to go with Jain.
When they returned, Aleq made me stay in my room with the door closed. I could hear giggling and everyone talking at once. Aleq kept yelling from the living room to be sure that I was not peeking. It was like a reverse Christmas.
Finally I was allowed out and they (with Wendy's help) had laid all their treasures on the floor for me to see.  It covered every surface. They had smiles that nearly blinded me and they could not stop talking! I heard all about their one on one volunteer, friends they saw that don't go to their school, their amazing new shoes (complete with a running demonstration) and on and on. Their excitement was catching and I found myself near tears.
That night when Daddy got home, he asked about every detail and they were all happy to share.
Even after school has started, they get happy every time they get to wear their new clothes and when they see another kid with a matching back pack (every child received one) they have to go talk with them or yell to them. They are part of a cool new club.
Thank you, Davis Schools for thinking of my kids. It did and is continuing to make them feel special and happy!!

Happy 40th

I realize that many people want to just ignore birthdays and especially their 40th birthday. But I am very blessed to be around to see mine!! I can't even describe how much I love milestones like this. Every one of them is so wonderful to reach and I feel a little thrill each time I realize that I get more time with my family!
Robert had a big party for me and we figure we had about 70 people stop by. He had Subway sandwiches, a cake, lots of desserts, and people told some pretty interesting (embarrassing) stories about me.
But my favorite thing was when Robert showed be the cake and there was only a 4 candle. No zero. He gave a blue bag from Tiffany and inside was a beautiful round necklace. The zero.

 

 

 

Zero

 

 

 

 

Our own "Tiffany" moment. Awww

Opening the gift.

Thank you cousin, Brittany for taking these!

Jain had to add her own touches to the cake.

Seriously, Robert made the whole day rock and I loved seeing all these friends and family!! It was definitely a day worth celebrating.

Because It's My Blog

The other day I took the kids over to buy some lemonade from the neighbors. There were 7 little kids there when some older boys showed up. The boys threw out some words, one in particular, that I could not believe. I politely asked them to watch their language around the kids and they were contrite and apologized.
When we walked away, Aleq had huge eyes and Tommy told me that he had never heard anyone use that word. Jain had not heard and whispered incredulously, "Did he say shut up?" That was the worst thing she could think that someone would say.


Because this is my blog, I am posting pictures of our trip so Sun Valley and some other stuff. Just because I want to.

After Jain gets her hair cut, she hangs out with the owner, Perry.

Hugh Hefner/Sito

Aleq fell asleep on Tommy on the way home from Sun Valley.

Aubrie going through Jains purse. This was just before Jain freaked.

Jain hanging out by the pond.

Swing, batter!

Aleq is getting pretty good at this!

Will and Matthew retrieving the soccer ball.  I'm still not sure why they had their game right next to the pond.

Beautiful, huh?

They were usind shaving cream to help me clean the counter.

Achoo!

Her earring fell out so she had to have it pierced again.  Poor girl.

Timing

If there is any lesson this whole process of recovery, it would be patience. Unfortunately, I am still learning that. But the brain does not heal quickly. At all. It has been over 6 years and things are still changing. Just yesterday I woke up with a migraine. Not a huge deal since I have had them...I don't know...I remember going to the school nurses office with one in the first grade. But since the stroke I have not felt the pain. I have had the aura, upset stomach and sinus pressure, but no pain in the head. I just take a couple of Advil and I'm fine. Sadly, I could actually feel the pain yesterday. It wasn't as bad as it used to be but still. It was one of the few perks of the stroke. Also, this week my face has been doing a lot of twitching. I was told that the nerve transplant would take years to finish healing and I guess that is right. Oddly one particular muscle twitches whenever I hear a loud noise. Weird, huh?
Having things still change has really made me start, or continue, thinking. There have been so many times when I can see the Lord's hand in my life, especially when I look back. One of the greatest miracles was the timing of the stroke itself. Any sooner or later would have been disastrous. For example:


Robert and I had nearly 8 years of marriage before the stroke. We had had some hard things but in general, our lives were easy. I think it allowed us more time to really fall in love. I loved him when we got married but we were allowed the time to grow so deeply in love that when we were really tested, being apart was not really an option. At least for him as I wonder all the time why he puts up with me.


I had a few years to really show how much I loved my boys before just being gone. It was a very hard thing, for all of us, to be apart, but with a lot of help and blessings, we were able to weather the storm.


My dad had passed away only 9 months before my stroke. It was a terrible shock and I was really sad. However, it allowed my  mom to have a lot of free time and a vacant house. She was able to temporarily move to Salt Lake to be with me every day and then have me live in her home for over a year after. She freely admits that she never could have devoted herself to my healing otherwise. But just as importantly, I have an advocate for me on the other side. I feel that my dad has worked night and day on my behalf.


Robert's parents were on two missions in the years before my stroke. Had they still been gone, they never could have done what they did. They moved from their home, five hours away, and only went home every other weekend. They lived at our house for nearly two years!! They cleaned, did laundry, cooked, finished a lot of the basement, and did all that was needed to keep the house going. But even more, they played, loved, cried with, and really took care of my boys and their hearts.


Had the stroke hit even a few weeks earlier, Jain would have died.


Today I took the boys to school, went to Hobby Lobby, finished putting together Aleq's project on Arizona, took it to him, cleaned the kitchen, did glitter tattoos with Jain, and took a second nap for the day. It was a decently busy day and I was able to drive and have the stamina to do what was needed. It will only get more demanding as they get older and I am able to do what needs to be done. Absolutely no more than needed most days.  I'm just happy my stroke was when my kids were small enough to not be busy.


There are many other reasons why the timing was perfect. Okay, not perfect in my eyes, That would be the stroke happening NEVER! But you get the idea.


Our family is actually very blessed and Heavenly Father knows us and is taking good care of us.

Emotions

I cry. A lot. I have been told that is because of the stroke and it is just one of the many new things to get used to. I cry at random commercials (thanks cheerios) or when my kids do something I think is genius, or when I almost fall, or when I breathe. Yeah, it's often.
I also feel other things more easily.  If I am on the phone and Robert whispers his input, I get all flustered and can't pay attention to either party. I get very impatient especially with my kids and especially when I am tired. I get more anxious about things such as sporting events or my kids trying something new.
Taking an antidepressant helps but only some. The rest is up to me. I talk to myself a lot. "Take deep breaths. It isn't appropriate to burst into tears over this, or here" (school programs) or "Robert is just trying to help. Hold up the INDEX finger as a sign for him to wait" and "What is the absolute worst case scenario and does this really matter in the scheme of things?"
As for the impatience, I have to really watch my sleeping and eating. Even then it gets hard. In the middle of a sentence I will have to change my tone or wording. I remind myself that I only have ____ minutes until bedtime. Mine, not theirs. I take some mommy time outs. But even after all that I sometimes sigh or snap. My kids call this "Talking Tired" and at times they just say, "Mom, go to bed." This mostly reminds me to calm down and we all bust out laughing. Or I cry.

True Artistic Talent

The kids draw a lot of pictures of me. With them, with daddy, me doing different activities, you name it, they have probably drawn it. I always smile and hug them but inside I'm full belly laughing!
But today I saw a picture that Jain had drawn of me for Mothers Day. My hair is in a pony and I have bright red lipstick. But the thing I noticed is that to her, I was normal. And pretty. And yellow.
I got thinking that they always draw me this way. Well maybe not always yellow.
My right eye is blurry and sewn smaller to help me blink. My whole right side is paralyzed  and I have to concentrate just to form words. I feel deformed. But to my kids, I'm just mom.