Rest. This is the number one recommendation for recovery from a concussion. My Neurologist has told me that I need to rest (sleep) everyday, after lunch for an hour. I'm a mom of 3 kids. Very busy kids. There's School, Soccer, Swimming, Kung Fu, Girl Scouts, playdates and more. Rest is very hard to fit into that schedule, especially on the weekends.
Take my day yesterday. Justin had a 9 o'clock indoor soccer finals game 30 minutes away. We had to get up at 7 and leave by 8 to get there in time. Aaliyah had a Kung Fu test that began at 9:30. She had slept over at a friends house the night before and they went to the test together. I got to her test around 10:30 and it ended by 11:45. From there, we got lunch at Wendy's, picked up my prescriptions at Target, headed home to get warmer sweatshirts then made it to the last stop of the day, an ice skating party for her school. Afterwards, we came home and rested for a little while, but the sun was shining bright so I decided to go on a walk with a friend who lives down the street. Completely exhausted, I ate some leftover salad, tidied up my room a bit and laid down to watch a movie with my family. Asleep by 10. Woke up 11 1/2 hours later.
That's a tiring day for anyone I imagine. Add the concussion and pain in, and it becomes even worse. Even with sleeping almost 12 hours, I am completely exhausted today. When that happens, my mind becomes all confused. Speech gets sloppy, thoughts get mixed up, vision becomes slow (does that even make sense?) I look around at any messes and they start to drive me nuts. I start cleaning and organizing. I'm exhausted, but if things looks visually messy and unorganized, it makes it worse for me. One of my doctors or therapists told me that we tend to want cleaner surroundings when our minds are frazzled. We, as people in general, can think better when we are surrounded by a more organized environment. This would explain my new addiction to household organization on Pinterest. That's been a great resource for finding organization tips, that real people have done and are affordable.
Back to my day yesterday. Justin's games all happen pretty similar, with the exception that yesterday was the championship game for the last indoor session. The game was all fast paced action. The other moms and I were reacting to every play, every move our kids made. "Ohhh! Ahhh! Great stop! Oh looks at those moves! Shoot shoot shoot!!! Take the shot already! YAY!!! Great game! Great win!" We all agree that we must sound a little crazy and entertaining. We have a blast watching our kids play. For that one hour during the game, I force myself to forget about the injuries, forget about the headaches and just allow myself to be there in the moment and enjoy it. For that one hour, I am able to be with friends, chat about life, our kids, our troubles. For that one hour, I get to be me.
I have held on tight to those times over the last 15 months. For most of the time since the accident, this was my only social time. The only time when I could leave my house and not be going to doctors appointments. These were the times that saved my sanity, kept me emotionally healthy. This all comes at a cost. I pay a high price for these moments. When the doctors tell you that you MUST rest each and every day if you want to recover, they mean it. I'll tell ya, laying in bed for months and months, really, truly sucks!! It is lonely, isolating, boring, never ending and painful in an emotional way. Friends go on living their lives, family comes and goes throughout each day, life continues to go on around you, while you're stuck in bed and in pain each day.
The costs for going to the games or swim meets are high. I fight the pain that is constant in my neck. There is compression between C1 and C2 in my neck. I don't remember what it's like to not have pain anymore. 15 months ago today, I was at the gym doing a 2 hour leg workout. Dead lifts, squats with and without the Smith machine, 535 lbs leg press, lunges of all types, and so much more that I can't remember now. I was in pain after that work out, but oh such sweet pain. The pain you feel when you've accomplished something great. Pain you can be proud of. 15 months ago tomorrow night around 5pm, was the accident. The pain I have had since then is different. It is unending. The drugs they have given me, get my mind off the pain, but don't take the pain away. Well, sometimes they do. They at least allow me time to almost forget that it's there. They allow me moments to be able to enjoy life. I've never been a good patient by taking them before they are needed. Even after surgeries, I take them only when I feel the need and I can't take the pain anymore.
The other pain I have is not constant, but when it's here, I cry. I cry uncontrollably. The tears pour from my eyes. I don't want to move, can't sneeze, bend, twist, lay down, get up, did I mention move? This pain comes from the sacroiliac joint. My SI joints pop out of place at times now. They are movable and they aren't supposed to be. They pop all the time and get locked in painful positions. There is also compression between L5 and S1 in my lower back. The pain fromthe SI joints, has landed me in the ER. Up until a week ago, I have had PT twice a week since June for this issue alone. When they act up, I can't do much of anything. It doesn't take much to trigger them either. All I have to do is wash my hands in a sink that makes me lean a little too far forward, or tie my sneakers, or turn around quickly in just the right way. It stops me dead in my tracks. Time, heat, laying down flat, muscle relaxers and newly found Frankincense essential oil helps.
As for the cost with the concussion, at times it is not so clear. I can tell you that I don't schedule many things to happen on Mondays for a reason. I tend to sleep on and off most of the day on Monday. Weekends are usually so busy and rushed, that by the time Monday gets here, I have nothing left. My reserves are dried up. My brain is tired. It shuts down and forces me to sleep. When the kids were younger, they were busy, but in a different way. They were home more, playing, fighting, making messes, needed to be changed and fed. A very different kind of busy. Now they need to be driven everywhere. I love to watch them in their sports or other things they have going on in their lives. I don't want to miss it. I have tortured myself with going to swim meets when I really should've stayed home. Seeing them swim for the 1-2 minutes they race is important to me. Talking with the other parents and coaches is important to me. The headaches and tiredness that come after are a high cost.
This has been an ongoing battle within myself this entire time. Do I stay home and rest or go out and watch them live their lives? I have stayed home when it is just too much. I missed Anthony getting his Varsity Letter for swimming, as a Freshman, because it was just too much that day. The sadness in his eyes when I told him I couldn't go almost crushed me. I have fought so hard to see all of his accomplishments and I couldn't go that night. He tells me he knows I am there for him and he knows I would only miss something if it was just too much. He understands. I know he does. I think both of us were incredibly disappointed that day.
Overall, I've done ok. The first couple months were so very hard. Spending my entire day in bed and not even being able to clean or cook for my family because it was just too much. I couldn't drive for about 10 months. even no, I am limited to about 30 minutes. Sometimes, even that is way too much for me. There's an awful lot of brain power that goes into driving. I never really thought about it before. Shortly after the accident, it became clear that driving was too much for my brain. Nothing was instinctual anymore. Turning on the blinker to make a turn, putting the car into the right gear, etc. It was all just too much for me to think about. I wasn't able to drive again until I took a driving test at a rehab center in mid October. Now, I don't always drive every day, and if there is ever an opportunity for someone else to drive, I let them.
As the months grew warmer, and my brain healed, I was able to get out and walk. At first it was really hard. My first neurologist said I should walk, but it was supposed to be a rest time for my brain, with no input. No talking, looking at a phone, music etc. I tried that a few times. The leaves rustling, the birds and bugs making noise, the water rushing in the stream, the roots in the path, the smells of flowers, the sunlight coming through the trees, were all distractions. I got dizzy from all that input. I found myself stuck, sitting on a log, next to the river about a half mile from my house, one day. I couldn't walk anymore. Everything in nature was making my head hurt. That was not supposed to be the way it worked. I rested for a long time sitting on that log. Finally I made my way home.
The next time I tried walking with my music. It worked. I wasn't focusing on all the little things around me. Just focusing on putting one foot in front of the other. I found a way out of my house. I spent the summer walking all over my section of town. I got to a point where I was walking up to 7 miles at a time. I felt amazing. I had a way out. I worked so hard for that. The summer ended and the days started to get colder. As that happened, the pain came back more and more. It quickly got so bad that I couldn't go out on walks anymore. I still can't walk on paths with lots of roots or if it's uneven. I can't see the differences in where to put my feet. When all the leaves were falling last fall, I couldn't walk on sidewalks covered with leaves. It made me dizzy and off balance.
I tired to use the treadmill at my gym, but that made me too dizzy. When I got off each time, I had to stand holding the way for quite awhile after. The whole world looked like it was moving as I was standing still. My neurologist suggested I try using the elliptical. By doing this, it would allow both sides of my brain to work together, with both my legs and arms moving at the same time. I tried this and it did help visually. I had to spend some time playing around with it because using my arms, pulled on my neck, causing pain, but it didn't bother my brain. My PT suggested I try to push the arms instead of pulling them. That made a huge difference. Now when I go to the gym, I do that for 30 minutes at a slower pace, then stretch for at least another 30 minutes. I have recently started swimming in a local Masters Swimming program, that so far, has been amazing for me. I have the strength to get through most of the workout and it doesn't hurt my neck. I'm hoping this will be a long term answer for helping the pain.
All in all, I am recovering. It is a very slow process. I have been told that I have already had the most significant jumps in recovery that I am going to and everything that comes now, will be much smaller, less noticeable steps. They do anticipate a full recovery. It will just take time. I have learned to hate hearing that sentence but I also find comfort with it. The improvements are measurable when they do reassessments. That is encouraging. I am able to do more each day and I can notice that when I look back and think of what my days used to be like. The cost and benefits of trying to get through my daily life have been hard. The balance is constantly shifting. Do I do something that will help me emotionally, knowing that I will pay for it physically? Some days yes, some days no. Either way, it makes life a lot more challenging.
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