Everyone likes football right?
Well I know that is not the case because my wife hates football, but I am a diehard football fan. I have been a fan of the Detroit Lions since I was a young kid.. My family was living in Lansing, Michigan during Barry Sander's heyday. I have been a Detroit fan ever since. I am that fan. Even during the year that the Lions lost every game I still wore my Lions gear. I am a loyal fan to say the least. Today was the first Lions vs Packers game of the season. Normally I don't get to watch much football as we don't have cable anymore but today I did. My family and I started watching the game after the second quarter. By half time my wife and my middle son had to leave. This left my youngest boy and me to finish the game up. Ultimately the Packers won the game but that really did not matter. I really wanted to watch the game so I did not use my tablet at all. That meant that I would have to move through out the entire game. To break up the monotony of jogging in place I decided that I would do 10 push-ups during each commercial break. After 150 push-ups I thought that was good enough. My youngest son apparently took my push-ups as a challenge as he one up'd me. He not only did 150 push-ups but he added 50 sit-ups. The little snot head. After the game was done we watch about an hour of the next game. My feet and legs were getting sore and tired so my son came up a game to keep me going. We ended up playing catch with a tennis ball. He came up with all kinds of little games. For that hour I was able to stay awake and not have to jog in place, I definitely can not compain. For me sports are so much more than just a silly game. They provide me with a method to interact with my family that is not only fun but effective at keeping me awake. They provide me with a means to connect with my kids. My middle son is the only other person in my family that is also a Lions fan. They also have provided me with many good memories. There are the silly memories that mean nothing to anyone else but myself. For instance I still remember a Lions vs Bears game where Barry Sanders was rolled over a pile of what seemed like the entire Bears defense. His feet hit the ground and his scored a touchdown while the Bears looked on in horror. There are the memories with my famiy. Like the multiple games of charity kickball that we took part in. Probably the most lasting memory there is me wearing a hula skirt and bowling over the second baseman to reach base safe. There are the everyday memories when my boys do something cool. My oldest son out muscling me for a ball, my middle boy blasting a soccer ball so high and far I can only watch it sore over my head, my youngest son showing up the adults with his volleyball skills, and my wife and I playing volleyball together and managing to keep the ball going longer than we ever do in a larger group. I started this blog talking about football, but as of can see to me sports in general are a big part of my life. No one in my family is a pro at any sport and that does not matter. Sports gives us countless things that we can do together, that are free and at the same time keep me awake. Sports helps me connect with my family. Sports keep me awake. Today watching the game with my family simply helped remind me how much sports have done for me, the funny thing is that I have never really played much formal sports aside from being on a couple weekend sand volleyball teams. The funny thing is just writing this blog I kind of felt some weight lift from my shoulders. Nothing is fixed, but while writing this I had lots of very good memories come flooding back. I am not out of my funk yet, but a silly football game just might have provided me with the first steps of getting out of it.
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Sometimes I think people are confused about what a person with a chronic illness wants.
It is not common for a person with a chronic illness to be told that they are lazy. That they just are not trying hard enough. That maybe if they were to just suck it up they could be normal. I can tell you that none of the above are true. I for one can no longer work. Many days just the act of loading the dishwasher wipes me out. So much of the day it appears as if I am doing nothing. That I am just giving into my illnesses. If someone truly believes that they would be sadly mistaken. People wth chronic illnesses are fighting 24/7. Most times they focusing almost all of their energy to hide their symptoms because they don't want people to think less of them. Some days they will do everything in their power to mask what is going on in their lives. They don't want people to feel sorry for them or to have to try and explain what they have going on. Many people with chronic illnesses wish they could simply do the small things in life. They would give anything to be able to clean their entire house again without completely wiping themselves out. They would give anything to be able mow the lawn again. If they can't work they rack their brain everyday to try and figure out how to get back into the work force. Kind of funny isn't it. People with chronic illnesses want to be able to do the things that their naysayers complain about. They want to be the person everyone else thinks that they should be. Strange thought isn't it, they want to be able to do the things that they are being tore down for not doing. So the next time you think someone is being lazy, think twice before you say anything. You don't know what that person is going through. It is very possible that at the very moment you think they are being lazy, they are put every ounce of energy that they have into just staying awake. The old adage, "Don't judge a book by its cover", certainly applies here. At my last job I work with a great guy that had a funny take on doctors.
He always said that doctors are said to be practicing medicine because they really don't know what is going on. So when they see us they are just practicing and hoping to get it right. While I know this is not the case it sure does feel that way. Today I had a follow up with my neurologist in regards to my swaying while standing and my new leg spasms. Well I left the appointment mad. Aren't you supposed to leave a doctor's appointment feeling better. I swear my doctor is like Doctor Jeckle and Mr. Hyde. Once sentence it feels like the guy is attacking me and the next sentence it feels like he is on my side. He says one thing that makes you think OK we are getting somewhere and then the next you are back to scratching your head. I have been swaying while standing for over 2 years and I still have no solid answer what is going on. My leg spasms are becoming quite a pain in my everyday life and yet leaving the doctor today I am still just as perplexed about what is going on as I was walking into the door. I swear once you get a doctor stumped everything changes. They go from wanting to help you and be the hear to big gains jerks.... When I was working I like the occasional challenge. Those challenges helped keep me on my toes and helped keep me grounded. They also pushed my abilities and helped me grow. In my job I could not turn my nose at them, I had to step up and figure them out. Just giving up or being a jerks about it was not an option. How come in the medical field when a doctor feels like they might be stumped they just want to quit. The only savings grace of the entire appointment is that my doctor actually told me why and I that he did not feel that I am employable. While those words do sting a little, I can not lie, but in terms of my disability case they can't hurt. Of course only if he documents it... Tomorrow will be a better day, it has to be because, well it is a new day! Outside of the obvious health effects what other lasting effects will my health problems cause?
The obvious place to start would be myself. Sure my health blows but what else is messed with. As a parent I struggle every day with not being able to no longer provide for my family. Every day I worry about if we will be able to stay in our house long term. I worry about turning into my mother and having to move my family all the time because something new went wrong. I worry about all of the things that my family has to take over doing because I can no longer do it. I worry about the the additional stress my wife is under because she is worried about me. Unfortunately all of these worries just add to my stress level. Sure I don't "feel" the stress because I am a weirdo but my body still feels the stress. We all know what stress does, it makes things worse. So while I might not personally feel the stress I can fell the increases in my ssymptoms. But I am just one small piece of the puzzle. What about my wife? What lasting effects does my health have on her? Her responsibilities in the family have increased greatly. She has to pick up a lot of my slack, not that I am doing anything wrong, simply put there are many things that I can no longer do. For instance I use to be the family driver, if we went anywhere as a family, I drove. Now that falls on her. She also worries about me. She worries about how stress is effecting me and that stresses her. She worries because she wants to be able to help me and neither of us know how to "fix" me. This adds more stress to her. Of course I am not the only one with a nasty illness in the family, she has one herself. All of this additional stress is simply exhausting her. In the past I would step up and help her out but I no longer have the ability to do that. What happens on those days that she is completely wiped out and I can't lift her up? What do we do then? Of course in my house my wife and I are only half of the equation, we still have our two youngest sons with us. They are under more stress than any child should face. They are watching their father fall apart in front of their own eyes. They are worried about what is going to happen next. What is next catastrophe going to be? As children they should not have to worry about this, their only worries should be done good in school and learning how to become upstanding adults. Instead every day they are facing real world adult problems. Problems that many adults will never see in their lives and my children are dealing with them now! This additional stress expand beyond my own household. My sister has taken on a large burden in helping my oldest son attend college because my wife and I can not do that. I can not even begin to guess what is going at my wife's mother's house.... I have seen countless memes that say something to the fact of, "You are only given what you can handle". Those memes are a bit short sighted. Maybe, just maybe, you can handle what is going on, but what about everyone else in your lives. Can they handle it???? When people think about invisible diseases or illnesses they tend to think about the person that has them, but that is only a very small part of the equation. It is not just the person that is sick that is effected, but everyone in their family and their friends. Luckily for me, my family has been very supportive. We are facing all of this together as a team. On the days that one of us is down, there is always someone else to pull us up. On the good days we do our best to be normal. For instance today we went out for supper, (we had gift certificates that my middle son won at the dystonia walk), we went to the park and played, (I can still take my youngest boys in a race), then we had icecream, (the boys won gift certificates at a school carnival). We had a good day! Sure I was dragging by the end, but it was well worth it. At the end of the day, it is important to remember that more than one person is effected when a family member has something go wrong with them. What ever is hurting them cascades throughout their entire family and through their friends. Don't forget about everyone else, they are hurting to! When I am asked how I am doing I have a pretty standard answer.
"Still Kickin" or "Still Moving". To me that is the best answer I can give anyone. My stuff is not going away and the majority of the time I am fighting. But it does me know good to complain because that is not going to fix anything. So I give my standard answer. And in the big scheme of things as long as I am kicking/moving I am doing as good as I can do. Movement is what keeps me going. So if I am doing well enough that I am still moving, I am doing as good as can be expected. Nothing that I have going on is bad enough that I can't move. I am sure that some people are curious, how much movement do I do? Well currently I am averaging about 20,000 steps a day, that is the equivalent of 10 miles a day every day. Now these steps are not just a casual walk or kind of shuffling my feet along. I am talking about enough movement to get my adrenaline going. I can do this by jogging in place but within the first 5 minutes of starting my jogging in place I start to sweat. Normally within 30 to 40 minutes the back of my shirt is starting to really absorb my sweat and if I am wearing something like our would start to see my sweat stains. If I go somewhere other than my house my only real option is to keep moving. So if I go to one of my children's events I am going to be moving until the event is over. Take for instance the day my oldest son graduated. I stood on the metal bleachers and jogged in place for over 4 hours. Luckily there was rain and some wind so I did not get to hot. The worst part is that it does matter what I am doing I must keep moving or pay for it. Take for instance this weekend. I participated in a 5k to support dystonia. I ran/walked the 5k in 35 minutes and 14 seconds. While not world record time I was whooped when I was done. I sat down for a couple minutes to drink some water and catch my breath. Well that couple minutes was to long. My neck and leg started going crazy. So once they calmed down, I stood up and started jogging in place. There is a positive side to all of this movement. My calves are monsters. There is not an ounce of fat on them. I have the stamina to play sports or jogging in place that almost never ends. Even if I hit the end of that stamina, I suck it up and move anyways. The consequences of not moving are a little to extreme to slow down.... Some have asked if I think I can keep doing this forever. Well honestly know, but really does it matter. The movement is what I most do for now. I will deal with later, later, because the now is what is right in front of me. In the end my message is probably different than you might think. It has nothing to do with my movement, but with my answer. Some people assume that I am blowing them off with my simple response to their how are you question. But in reality I am not. If I am still moving/kicking, then at a minimum I am having an OK day because I have not succumb to my illnesses and I am still fighting. The day you get a different answer for me is the day that maybe something is really wrong. So when you ask someone how their day is, don't assume they are blowing you off with what you feel is a silly answer. That answer may have much more meaning to it than you know. That answer could be telling you a whole lot if you just look a little deeper. Today was the Stomp Out Dystonia 5k in my town and I did it. I completed it.
My time was not a world beater time, but it was not to shabby. I completed the course in 35 minutes and 14 seconds, that is the equivalent of a 11 minute and 20 second mile pace. Being that I just started to get back into running about 5 weeks ago I think I am doing pretty good. Of course completing the course did not come without its negatives. Once I completed the course I sat down to drink some water, bad call. Within a minute my head started going on over drive, it even decided to get stuck at one point. Luckily I was able to force my neck out its stuck position. Of course then my right leg started going crazy. Those two things were the least of my worries. Walking to the car was an experience in itself. Both of my legs started going crazy. In the moments that they were not going crazy my left knee would buckle. Needless to say it took me quite a while to get to the car. In the end I made it under my own power so all was good. Getting home was also a treat. Both my legs were spasming at the same time and walking was not going so well. With the help of my wife I got myself ready and I took a nap. I did not get a long nap but I did get some sleep. You would think that after all of the difficulty after the run that I would regret doing it, well that is not the case. If there was another run that held personal meaning to me tomorrow I would do it. My health has taken many things to me, but I refuse to bend to its will. I will fight it with every part of my being because I refuse to let it beat me. Actually I think it is good for me to stuff like this. People can kind of see parts of two different worlds wth me. When I first get there they see me constantly moving but at first glance everything looks ok. Afterwords they get a glimpse into what can be. Into how my illnesses can really affect me. I don't say this because I am looking for pitty, but because in many cases people don't see the really bad times. They just see me always moving. Days like today tend to make my invisible illnesses very visible. Today I feel very proud. I did better than I thought I would on the 5K and I did not let my illnesses win! They might have slowed me down a bit but I over came them! Asking why can be a very dangerous question.
It is very common for people with chronic illnesses or when bad things happen in someone's life to ask why is this happening. The majority of the time when this question is posed people tend to focus on negative things. They ask if they did something wrong. Maybe they should have done something differently. Or what do they need to change to make everything better. The majority of the time these questions tend to lead down bad roads. I guess we should not ask why then right? Not exactly! Asking questions is ok just ask a little different question. Instead of asking why, ask what. What should I do now? The point of this question is not to dwell on the negatives but to focus on the future. What can I do now? See, the point of this question is not to look at you might have lost or what you used to do, but to focus on what you are going to do. Let's use me an example. Most of you know my story, short version, I have narcolepsy and dystonia and I am attempting to get disability benefits. Many, many things have changed in my life and in some cases are still changing. If I asked the question why, it would lead to nothing but pain and agony. But if I ask what now and focus on positives I can change a negative into a positive. So let's try that. What now? Instead of taking a back seat in my children's lives I can now sit in the driver's seat. When I was working I was an involved parent but there were many things that I missed. In some cases even when I made it to some events I was not really there because work was on my mind. Now all I have is time. While things might be tough and some times the events are hard on me, I am there. I am only focusing on them. Before all of this, I would have never had this opportunity. When I was working I had little time to spend with my wife. Between work and trying to be involved with the kids we had very little time together. On top of that much of the time that we did have together I was exhausted. Yes I have more struggles than I ever had. Yes every day is a battle for me. But each of those days I get to spend it with my wife. Before all of this I would not have had this time with her. I could go on but I think I have made my point. Yes, things in my life are extremely difficult. So many things have changed in my life that it is mind boggling, BUT all is not lost. While multiple doors have been slammed in my face other ones have been opened. I also know people that have been diagnosed with a chronic illness and remade themselves. I know multiple people that have turned to the arts. One has their own online store where they sell their art. Another has taken up painting and teaching others how to paint. Many other have started running a business from their homes. They have turned a negative into a positive. So on your worst days instead of asking why, ask what now. Instead of focusing on what used to be focus on what you can do now. I will leave you with one last parting thought... Tomorrow I will be participating in a 5k for dystonia. At one time the organizer of the event struggled to eat, talk, or see. They were in a bad place. Today they are working and organizing an event that as of today had over 70 participants. They could have asked why but instead they asked what now. They are doing things that no one ever thought that they could. Remember the why is probably not important, that what now is really what is important. This Saturday I will be taking part in a 5K run/walk.
The 5K is to help raise money to increase awareness and find a cure for dystonia. I have a particular interest in this walk because I have been diagnosed with cervical dystonia. It is also possible that I might have a couple other forms that I yet to be diagnosed with. Dystonia is an incurable neurological disorder that can make parts of your body either move uncontrollably or get stuck in one position. For some it can be extremely painful and for others it is not. I don't really have any way to explain how it feels when your body moves without you wanting it to. In my case when my head is really going there is nothing I can do about it. No matter how hard I try my head just continues to move. On my worst days my head will move to an extreme position and then try to move even farther. I have tried to take both of my hands and physically force my head to move out of this position and I don't have enough strength in my arms to do so. So Saturday I will take part in this even with pride. I definitely won't run a good time as I am just getting back into running but I don't care. Just taking part in the event is all that matters. I do have some concerns about the 5k. I know that I can move fast enough between jogging and speed walking to keep myself gong. This is important because if I don't go fast enough then my knees might start buckling, this because of narcolepsy. My concern is what is going to happen once I complete the 5k. Normally after I exert a lot of energy the moment I quit I quickly start to crash. Standing in one place because quite a chore because my swaying when standing gets pretty bad. My head will start moving like it is in overdrive and I am pretty sure that my left leg will start spasming quite crazy like. Another thing that is rolling around in my head is that I keep being told that I should not do things outside. I should not run around with my kids. The reason I have been told this is because I am in the process of applying for disability. Doing something like this could be construed as there is nothing wrong with me. Well you know what? I don't care how I will feel after the 5K. I don't care if the wrong person sees me. This event is for a good cause that means a lot to me! I can not lie I have been having a tough go at it lately. But not all is bad.
I have been trying to get myself into the best physical shape possible. Because of medication issues and a broken ankle I had really slipped from where I was about 9 months ago. To do this I have been trying to up my step total, (that is not real hard as movement is the only sure fire thing to keep me awake) and I have been doing arms and abs at night. The best part though is that I am not doing this alone. My youngest son joins me almost every night doing arms and abs. But he is not just there going through the motions, he is trying to push both of us. On the days that I don't really want to do my exercises he pushes to make sure that we get it done. Other days he is the one trying to make sure that we push when exercising. For instance today we were doing our "special arms". In all honestly I just kind of came up with two different sets of arm exercises. That way we don't get bored and arm muscles don't get use to what we are doing. Today's push-ups are not the standard push-ups but we put our feet on an end table. Today he decides that he was going to up the amount he was doing. Of course I can not let him do more than me, so I keep pace with him. For triceps we use the same table and complete triceps dips. We use pretty solid form and go slow. After the first set he was talking about add more reps. I didn't really want to add more as it was triceps but after the second set he brought it up again. SO.... We double the total for our last set and you know what, we both did it. Did it hurt, ohhhh yeah, but we did it. It is crazy to think that my 9 year old son is my driver to keep working at getting healthier, but he is some days. Many days he is not necessarily thrilled to be doing the exercise but he makes sure we do it none the less. I think for him just doing something with daddy is enough driving force for him. On my end because I am working out I get enough adrenaline going that it keeps me awake. So not only am I doing something with my son, but while I am doing it I almost feel normal for a little bit. So while so many things are going haywire in my life, my youngest son has found a way to make me feel normal for a couple minutes everyday! It is a horrible feeling when the symptoms from your illness scare your children.
My family tries to eat supper at the dining room table as often as we can. Lately our lives have been crazy and we have not managed to do it much but tonight we did. Now eating at the table can be a chore for me but we feel like as a family it is something that you should do. Unfortunately today was one of those days were eating at the table was a chore. My neck started going bananas on me, it was turning to either side quite extremely and getting stuck. Plus I was really rocking in my chair. After we got done eating I actually had to sit in my chair holding my head in both my hands for a bit to get my head to settle down. Finally my head settled down and I got up from the table to go sit in my chair. Getting to my chair did not go as planned. First my left leg started acting up, pretty much my muscles from my knees to my toes just kind of go crazy. I waited out the spasm and kept walking and then my knee buckled. I reached the door way between the kitchen and our living room and I had to stop because my leg started going crazy again. I was attempting to wait it out by standing still but that caused me to sway backwards. My youngest son was behind me and put his hands on my back to keep me from going to far. As my leg was still going crazy I just leaned forward and leaned against my hands on the doorway. I don't know how long I stood there but I had to stand there for a bit because my leg would not stop. The worst part is that my youngest son was getting scared. My wife tried to get him to do something else and she would help me out but he did not want to leave me. He was afraid something would go wrong. Finally my leg calmed down and I got to my chair to have my leg flair up again. Finally I sat down and off the races the thing went again. I looked up to see my son looked at me with terror in his eyes. He did not say a thing but I could tell he was scared something bad was going to happen. I am at a loss for what to do. My symptoms are getting worse. My leg started as a very rare thing and now it is happening multiple times a day. If it follows the same path as my neck, it won't be long and my leg will be going crazy more than not. On top of that the other day I had an event in my right arm. I was standing in a corner using my arms to support myself, (I was tired and I needed a break from jogging in place). As I was supporting myself my right tricep started to tighten and relax over and over again. I am afraid that this is going to continue getting worse like everything else has. The thought of that scares me, but what it will do to my family scares me even more. I don't know how my youngest son will take it if both one of my legs and arms goes crazy on top of everything else. I am pretty sure it will crush him. I go back to my doctor on the 21st and hopefully he has some suggestions. It is bad enough that narcolepsy has already stripped me of so much but now dystonia, (I assume but won't know until I see my doctor) is starting to take even more things from me. At a minimum I need answers of what is going on but hopefully I get some reprieve from the symptoms also, this continued progression sucks. Today was simply heartbreaking.
My wife and I have been helping a great elderly women out for over six months now. Her husband passed away early this year and she needed help. Our entire family stepped up and help her with little daily chores mostly. Things that she just could not do anymore. My wife and I also helped with getting her to the doctors and out of the house. All and all pretty manageable things. In May she got a sore on her leg that still has not healed. She has been a fighter while dealing with this sore. Her doctor and primarily her at home nurse have tried countless things to get this thing to heal. Finally recently someone stumbled upon the right treatment and her leg is making great strides. Unfortunately the rest of her slowly started to break down. The fight in this women is amazing. Even while dealing with an injury that has last almost four months now and her legs failing her she kept fighting. The only thing she really wanted was to stay at home. She had a bad taste in her mouth in regards to nursing homes and she adamantly did not want to go into one. Because she is a fighter even with everything she had going on, she was making it work with our help. Over the last week, fighter or not, she started to lose more and more of her mobility. Just a month ago she could get around her house, getting herself in bed, go to bathroom, whatever on her own. Over the last week she quickly lost this ability. She continued to fight with all of her heart because she wanted to stay home. But you could see it in her eyes that she knew things were getting bad. Just talking about the possibility of having to leave she would start to tear up. Well, today, it reached the point that my family could no longer keep her in her house. She had to go to a facility that can help her on a 24 hour basis. I swear when she made the decision that she had to leave you could see the spirit drain out of her body. Her eyes welled up with tears and her body language changed. She put on a great face and never broke down, but I know her heart was breaking. On top of all of this, her worst worries, (at least that she verbalized) was about her cat. She did not want to leave her cat. She did not want him to be alone. She was just broken up about her cat. It is just amazing that this women, who can no longer stay in her own home, is more worried about her cat. My wife and I, along with a friend of the eldery lady, help her settle into her new surroundings. Once we got her there she was fed supper and she ate with vigor and drank more liquids than I have ever seen her drink before. She said all of the right things, put on a strong face, but her eyes told another story. She was crushed that she was no longer at home. She is in the best place for her in safety purposes, but in terms of her mental health I don't know if that is the case. She is a strong person and I hope with time that she comes to like her new surroundings. She is a great person and she deserves to be happy. She deserves better than this. On the bright side at the facility she is currently at she can be visited by her cat. Not tomorrow but the next day we will be taking her kitty up to see her. If nothing else I know that during that time she will be happy. Hopefully that happiness will help pull her out of her sadness! Today was simply heartbreaking! I know I had said this before but the disability system is broken.
I have now heard countless times that the system is setup to get people to stop following up with their claim. A large majority of people that apply are denied on their initial application and then their first appeal. Everything I read says that the reason for the denials is that the government wants those who are applying to give up their attempt to get disability. The reason for the government trying to get people to give up, there is not enough money in the program to cover everyone. So their hope is that as long as the majority give up then they will have enough money left for those that stick it out. The problem with that hope is on average it takes a year to make it through the initial application process and then the first appeal. So if the majority of people that go through this process quit, that means the majority of people go at a minimum with little to no income. Yes, in theory you can get a job, but most people highly suggest that you do not work during the application process because if you are working then obviously you are not disabled. On top of that many of the people are applying because they can not work. So a year with no income and then nothing. I don't know many families that can go a year minus one person's income and then magically recover from it. Especially if the person that is not getting the income truly can not work. Then we wonder why so many people in this country are deep in debt. I for one have no choice but to stick it out and go file my last appeal. Big problem there is, on average it takes a year to get to your hearing to complete the appeal. So now you have to figure out how to keep your family afloat for 2 years with no income. The stress of trying to live on nothing is going to do nothing but increase and heighten what every is ailing the person that is applying for disability. That is not the worst of it. It has been suggested to me multiple times, justifiably so, that I don't make my blogs public, that I don't make it known that I use movement to stay awake. The reason, because the government can use anything against me to deny my claim. Unfortunately I know these people are probably right, but what is a person to do. Do I stop moving, well if I do I am pretty much going to be sleeping 24/7. If I stop moving I can kiss any kind of physical fitness goodbye and that is only going to make my symptoms worse. BUT, if the wrong person sees me moving, too much, it can be used against me. What a catch twenty two, I either do what I need to stay awake and put my claim at risk or I just succumb to my symptoms. How about my blogs? Someone might say that if you can blog daily than why can't work. Never mind that normally my blogs take about 30 minutes to right and the entire time my head flops around like a fish on land. Never mind that to blog I have to be reclined in my recliner and have the TV on. If our take away the recliner I will rock around in my chair way to much to even attempt to blog. If you take the TV away I will slowly fade away to zombie land. Even reclined with the TV on I still fade, it is just a little slower. Finally my blogging is currently the thing that I found to kind of replace the void of no longer working. So should I just give that up and slowly allow my mind to eat away at me because I would not want to hurt my chances at getting disability. The people that have given me this advice were spot on with what they said and why they said it. The problem is I can't give up my blogging and moving, my illnesses have already taken so much away from me, I can not loose these two things also. It is hard enough as it is, who knows what my mind would do to me if I gave up these two things. I really hope that I get to my last hearing much faster than a year and that I am approved. In the mean time as much as it might hurt my case I can not give up moving and blogging. I can not let a messed up process take away from me the few things that my illnesses haven't already taken from me. Having your picture taken is an easy thing, right?
Maybe for the average person that might be the case but for others it might not be. Sometimes it is extremely difficult for the person that is having their picture taken. I know that might seem like a strange thought, but it is true. I will give you a couple examples of how getting your picture taken might be difficult. For the first example I want you to imagine that it is very difficult for you to stand in place. When ever you try to sand in one place you sway forwards and backwards. Many times you sway so far that you have to grab something to keep yourself from falling. So now I want you to try and stand perfectly still and not move while your picture is taken. Don't sway, don't fall, don't move! For the second example you now also sway when you sit in a chair. When sitting in a chair that is not a recliner you sway forward and side to side. Picture time. You have been placed on a chair and you have friends to either side of you. OK, smile big and remember don't move. You don't want the picture blurry. Dont sway to far you might fall out of your chair. Stop moving, smile, what are you doing..... For the last example the problem you now face is that your head moves uncontrollably. You don't want it to move but alas that does not matter because it is going to move. Your head might droop forwards or fall to the back. When it is not moving forwards and backwards it shakes side to side like you are saying no. Picture time! Don't move your head now. I know you can stop it but stop it already! Come on now you are making the pictures blurry. Finally, you got a good picture, or is it. Your head decided to move backwards at the last moment and in the picture you look kind of crazy with your head tilted back. The worst part of those three examples, they are all real life examples. They are all things that happen to me. When my family tries to take pictures with me in it, it is like an Olympic sport. Everybody get lined up, I move in last, and then the person with the camera has to hurry and take a picture fast. If they are not fast enough I will start to sway and/or my head will go crazy. If I am the only person getting my picture taken you have to go even faster, because there is no one around me to try and support me. Man pictures are so much fun. At the end of the day, I know pictures are an important part of life. If nothing else they can be used to spark old memories that you might have forgotten. I know for me as my memory seems to get worse pictures are a blessing. My memories are not gone I just can't seem to access them, seeing a picture finds the memories at least during the moment. I think the biggest thing to remember is that it is difficult for some people to have their picture taken. If you are taking pictures of someone like this try to make the pictures go as fast as possible and remember that they are trying their best. Unfortunately sometimes people don't have control of their bodies no matter how hard they might try. Such is my life lately, take one small step forward and then three giant steps backwards.
Things were kind on a uptick for once. My oldest had started his first day of college, my disability claim was under review, and I had an OK day instead of crap. But I should have known that things in my life just don't go good these days... I knew the chances of my disability appeal were slim to none but I was trying to be hopeful. Between the help of family, friends, and a GoFundMe page my family paid our August bills. We also have the money for our September mortgage payment. We do not have the money for all our bills for September but we had the big one covered. If my disability claim was approved this month we just might have pulled through this hole mess still standing on our own two feet. But those hopes did not come through. Today we got a letter from the state. My gut said it was my second denial and that is what I told my wife as she opened it. Believe me I wish I was wrong but alas I was not. I was once again deny my disability claim because who ever reviewed it felt I can still work. Please tell me what job I can do when I have the following going on: -I can't stand still in one place because I sway back and forth, I use a cane to lean on to provide support -I can't sit in a standard straight back chair because I rock all around -I can't drive because a couple minutes in a car and I am falling asleep -Walking at anything less than a mall walking pace and my knees will buckle -Dory on Finding Nemo has a better memory than me -I slip into automatic behaviors much more than I am willing to admit -Now I am getting "tremors" in my left calf and foot I have more issues but that is enough. I truly want to work. I wish I could be that person that I use to be. I was able to provide my family with enough income that we were not in need of anything. We did not have a lot of extra money but we were doing OK. If we went anywhere, I drove us there. Unfortunately my health has taken away from me the ability to do these things. For 19 years I worked my hardest to provide for my family. I worked my way up the ranks to become a manager before I received my degree. It did this all through hard work. But now all the hard work is going to be for nothing. We are looking at around two months to get my next appeal filed followed up by an average of a one year wait before the appeal is processed. I doubt we can pay our bills for another month nonetheless 14 months. What do I do now? How do I keep my family afloat now? How do I keep my kids in the only house that they have ever known? How to I maintain my own sanity knowing that right around the corner everything that my wife and I had built is going to crumble? How can I continue to teach my kids that hard work pays off, when in my own life that is proving to be false? It is bad enough that it feels like my health has stripped me of so many things, why do I now deserve to be kicked while I am down? It is bad enough that my health still seems to he sliding backwards, I did not need that extra kick. The worst of it all, that hard work that I prided myself on for so long, can't help me now. What do I do now? Today started off not much different than most days.
I took my second dose of night time medication almost three hours late so I did not get out of bed until around 8:00am. That is quite late as normally I am out of bed closer to 6:00am. You would think being in bed for an additional 2 hours would have helped me out, but it did not. I woke up being my usual zombie self. Real sketchy on my feet, barely able to keep my eyes open, etc. But oh well, that is just par for the course. We had plans to attend a family picnic for labor day so I sacked it up and off we went. The picnic went much better than I could have expected. While I felt like my stomach was in my throat the entire time, that is normally a sign I am going to crash, I just kept moving. I played frisbee, soccer, volleyball, and football. I even managed to play a game of euchre. I had jog the entire time I played but I played none the less. In the approximate three hours we were at the picnic I managed to get 18,000 steps, not to shabby. Got home and took a nap. When I got up we ate supper and all four of us went outside and played a little four square. Then my youngest and I did our arms, followed up by me running a mile on the treadmill. I am tired but I am OK with that. I managed to make it through the majority of the day not feeling like a zombie. All was not perfect but compared to the previous couple of days it was a huge upgrade. I have said many times that I live day to day. Essentially no matter what happened the day before, tomorrow is a new day. It took me a couple days but at least for one day I started to pull out of my funk. The biggest key was I did not give up. Sure my illnesses won the battle for a couple days, they did not win war. Today, I won the battle! Tomorrow, who knows, but it is another day. Another day to do my best! Yesterday was a rough day, but I made it through it.
Last night I slept as good as I sleep. For the first half of the night I did not move an inch. I know this because when I took the second dose of my medication at 2am my arm and shoulder hurt from laying on it. Today should have been a good day. Well that was a poor assumption. Even waking up I was in pretty rough shape. Getting my cereal I walked around the house with one eye closed and the other other open just a sliver. After eating I completely zombied out. Awake but not really. On top of that pretty much everything was hurting on me. My arms were sore, shoulders, legs, and my healing ankle. I took a nap around lunch time and then the family and I went to a community event. We had to wait in a line quite a while for food which you would think was a bad thing but it was not. I simply jogged in place the entire time. The jogging was enough to get my adrenaline going so I was ok. All of my aches and pains went away and I jogged along. I ate pretty quickly as I knew sitting was going to be bad and went back to jogging. So far so good. Then we took a couple family pictures and the crash was on. Just sitting long enough to have a couple pictures snapped and I was start to tip backwards. After the pictures we took a short walk to the car and the crash continued on. I tried to use my wife's phone on the ride home but it did little to pull me out of the crash. When we got home I sat in my chair and all my aches and pains came rushing back. Plus it was everything that I could do to sort of be a zombie none the less be any kind of awake. I microwaved a little something for supper. My wife offered to make it for me but I was hoping that a little movement would help. It didn't. After eating the zombie was back. It took both of the boys and my wife close to ten minutes to get me up and moving. I always like to play outside but I was just done. I had no energy, everything hurt, doing anything was the last thing I wanted to do. Eventually they got me up and going. Playing again got my adrenaline going and I had fun, but eventually it got to dark and I had to stop. Hello zombie again. So here I sit kind of awake, kind of sleeping. Head drooping forward and sideways. Stupid narcolepsy is taking this round. Tomorrow we a family picnic for labor day. I know that I can run around like a yahoo to keep going but I will get tired eventually. Then I am screwed. Living off of adrenaline is an iffy proposition. Yes it keeps you going when you are doing it, but it fades fast and you crash faster. I truly hope tomorrow is a better I really HATE being a zombie! I am struggling with my motivation.
Lately all of my symptoms are kicking my butt. I wake up in the morning and feel like I had never slept. It is all that I can do to get my morning bowl of cereal. I eat it not because I am hungry but because I know I have to. After eating I sit in my chair and zombie out. I use my tablet to try and stay awake but I am simply coasting. A couple days this week I was not able to stay awake long enough to make sure everyone in the house is awake on time. Lunch time kind of surprises me everyday. My wife starts asking me about what we should eat and there is no motivation to eat. I am simply exhausted. I don't care if we eat or not. I am just spent, even though I have not done anything. After lunch my wife has been pushing me to nap. I don't want to nap because I haven't done anything yet and I don't want to waste the day, but I don't have the drive to get anything done either. My naps have only been about an hour and I wake up. I am still dog tired, still feel like I have not slept in ages, but my mind won't allow me to stay asleep. I can go back to sleep within a minute but then I am back up just as fast as I fell alseep. Once up I do my best to try and be part of the family but I am still just there. I might force myself to play with my wife or boys outside but to get there is like pulling teeth. I don't have the drive to do it, I usually only make it out there because either my boys or wife nag me enough to get moving. I am still getting my steps. I am still doing my workouts. But it all feels like I am just coasting through life, just barely there. Just barely winning the battle to start awake. It feels like if I take a one second break from fighting my symptoms I will be passed out on the floor. My wife and kids are my motivation but I am getting tired. I am as stubborn as they get but even that stubbornness is waining. I really need something to turn around in my family's life. I need some good news for once. This crap is wearing me down and it is affecting more than just me. My bad days affect my family also and I having more bad than good lately. I am tired! I am starting to be concerned with what the future will bring for me.
As most of you know I have Dystonia and narcolepsy. This is kind of a interesting pairing as fatigue or being tired tends to make my Dystonia symptoms worse. That kid of blows because narcolepsy pretty much makes me feel fatigue or tired all the time. Throw in those days when narcolepsy drains me of every bit of energy that I have my Dystonia goes on overdrive. Of course all the movement just wears me down more. Honestly that is not what concerns me. Have been dealing with this cycle for quite a while now. It sucks but alas it is my current reality. What is concerning me now is my legs. Narcolepsy puts me at risk for having my knees buckle uncontrollably, cataplexy. Of course the more tired that I am the more frequent my cataplexy is. But again this is not what is concerning me. Have been dealing with this buckling for a long time and the majority of the time it is just a nuisance. Unfortunately I am getting another new symptom in my legs. I am now having times when my left leg starts to spasms from my knee down. The best I way I can describe what is going on is bouncing a baby or kid on your knee. You lift your foot so that our are just putting pressure on the front pad of our foot and you flex your calf repeatedly. The problem is that I am not trying to bounce a baby on my leg. My legs starts moving what feels like a thousand miles an hour. The longer it goes it starts to hurt. It feels like my entire lower leg from my knee to my foot is trying to rip my leg into smithereens. I have not been able to make the movement stop on my own. If I pick my leg up to remove the pressure on it, my foot just starts to move uncontrollably. I have tried to put all of my weight, being 250 pounds that is a considerable amount of weight, and it does not stop the movement. If anything it makes it move faster and almost more violently. I have already started using a cane because of my cataplexy and swaying when I stand up. Even though my legs are the strongest things on my body, they seem like they are start to fail me. What am I going to do if my calves cramp up from the spasms. When they are spasming now I can not force them to stop, if I cramp I am afraid I won't be able to get the cramp out. I already have moments now where I have to stop what I am doing because my leg is going nuts. What am I going to do if my leg spasms increase in frequency? If the legs spams follow the same pattern as my neck and swaying I am in trouble. The neck and swaying started as a periodic thing and now they are a full time thing. I am really concerned that my leg spasm is going to do the same thing. If this spasm starts becoming a full time thing I am in serious trouble. I am afraid that I might lose the ability to walk if that happens. I have already lost so much, I don't think I can stomach the loss of being able to walk. Normally I try to be positive and look for the good in things but I don't know how to do that with this. My recent experience with my health tells me that it is not going to improve so.... |