For the majority of the day it was just me and my youngest son at home today.
My oldest son had a packed day. He was playing in another orchestra concert, followed by a dinner with the orchestra, and then volleyball. My wife and my middle son where gone taking photos at a wedding. That left me and my youngest home from approximately 1pm until 8:30pm. My wife told my son he was in charge. My neck was still some what stiff and I had a little pain but nothing like the day before. So that alone was pretty good. My head movement is closer to my normal level, so again that was pretty good. But that was really just a small part of the day. First we started the day off by watching some tv, (of course had to use my tablet while we watched tv, but that is normal). We started off watching a show about flipping cars, but he was not really digging it. So I found a cartoon for us to watch, Ben 10. He did not say it but you could really tell he approved of my selection. He was really enjoying watching cartoon just the two of us. After the cartoons we played a bunch off magic, just the two of us. The first set of games he killed me and I won the second two, but who won did not really matter. We just had a good time playing. There was plenty of playfully banter back and forth, honestly we just had a good time. For supper we had fish and Red Robin fries. He was really excited for supper because of the fries. Shoot everyone in the house loves us some Red Robin fries and believe it or not the frozen ones that you can buy at the store are pretty good. Alex ate so much that he could not even finish his fries, which never happens. After supper we had a little of my favorite ice cream, mint chocolate chip. And yes, we ate it directly out of the container. Man was it good! After supper we moved on to ping pong. Who won the games does not matter because we simply had a blast. We laughed, joked, giggled, just had a blast. There were plenty of insults thrown back and forth and teasing, in the end there were countless times that we had to stop playing because we were laughing to hard. Was a tired, yep I had to fight much of the day to stay awake, but I had a good day. Just me and my youngest hanging out and being kids! I could really use more of these days with my family. I might not have accomplished anything, but I sure did have fun!
0 Comments
As most of you know, I had botox injections in my neck earlier this week.
My doctor really did not tell about any side affects, other than to say that small built people have a chance of having swallowing issues. In a support group that I am part of I had read of the potential for some pain and the botox flu. Unfortunately I did not read about what I have going on. Last night I started getting stiffness and pain in my neck. If I moved just right it almost felt like my neck was locking up. I could push through the pain but man did it hurt. Overall I was not overly concerned as the doctor had said the medicine works its way down your body, which is why he injected the medication so far up my head. I woke up this morning with my neck was still sore in spots but I thought it felt better. As the day went on I did not have a lot of change but it was still better than last night. In the early afternoon I went outside with the boys and played a little Frisbee and catch with a football. Overall I did ok, but picking the ball or Frisbee up could be tough. I actually started avoiding looking at the ground to pick the stuff up because if I did not I was in for quite a bit of pain. But I managed. Later in the day my oldest on had a concert, he plays the violin in a semi professional orchestra. Well things really got out of control there. My head started moving even more than normal and it also started getting stuck in an extreme position. On top of that it kept moving. Once I was able to get my neck unstuck, then I had to work through the pain that had the night before. Almost like my neck muscles were locking up and not allowing me to move. The worst part of all of this is that once I managed to get my head unstuck it would just go to another location and get stuck. This really kicked in around 5:30 and now at 11:15 it is still going full force. I am for no pain on gain but this is plain stupid. The doctor said that the medication would be working best in 7 - 10 days, I sure hope he is right because right now I have taken a huge step backwards. More pain, more movement, and more occurrences of it getting stuck. Things better start turning around soon, but I am definitely not ok with what I have going on! As many of you know I had my first botox injections in my neck yesterday.
The procedure started off kind of strange. My wife and I asked my doctor about the potential of my wobbling when standing being axial dystonia. He responded by saying generalized dystonia. We then discussed the possibility of the wobbling being caused by my head movements. He told us there was a simple test to see if the wobbling was an inner ear thing, (my head movement causing it). He told us I needed to stand on something solid but off the ground a little bit. The reason for this was to add additional "stress" when standing. Not sure why the additional "stress" was needed but ok. He said then I needed to make sure that where ever I was the room needed to be completely dark. Once I was as stable as I was going to get I needed to close my eyes. If I felt like I had just gotten off of a merry-go-round then my head movement could be causing the problem. Now the strange part of this was he wanted us to do it at home. If this would tell me if the wobbling was additional dystonia, more than just the already diagnosed cervical dystonia, I would have thought he would have wanted to do the test in his office. But what ever, he gave us homework. My wife also asked him about my hands always feeling "sticky". It does not matter what am doing, they just feel sticky. I could wash my hands with soap and water, and still sticky. He tolds about people that sweat a lot when they are stressed and sometimes that makes their hands sticky. The problem there is that this happens all of the time, for instance while typing this my hands feel sticky. He then talked about some people just really sweat a lot. Now I have always been a heavy sweater but not in my hands. I guess I just added another area that I sweat more than the average bear. After those discussions we went on to the actual injections. Now for those of you that have never had this done, they use an extremely small needle, in girth. Honestly the needle going was less discomfort than a pin prick. BUT, I swear the needle was a couple inches long. It felt like that needle was gong for ever. Mind you at least two of these injections were up into my hair and he went a LONG way with that little needle. Then it was time for the pain. After running the needle "miles", 😃, into my head, he injected the botox. That stuff HURT! On top of that he injected me in six different spots, three on each side of my head. After the injections I really only had one injection site that kind of hurt. I guess all and all it was doable. Later I did have some more intermittent pain at that one injection site and I did get a bit of a headache, but nothing to awful. Later that night we actually went outside and attempted to hit the volleyball around a bit. I struggled not being able to really go after the ball. No jumping or running after the ball yet, my ankle is not there, but it is improving. Also inbetween rounds I of course wobbled around, but it felt good to be back outside playing sports with the family. Right before bed my wife and I completed the test the doctor told us about. I stood on our living room end table and turned all the lights off. Unfortunately I did not feel like I was on a merry-go-round and simply wobbled like I normally would. If I understood the doctor correctly that means that even if my head quits moving I will still wobble. Time will tell I guess. In terms of today, things went ok. I was tired like usual but no extreme pain. This morning that same injection spot was kind of stiff and sore, but it disappated pretty quickly. If the shots work for the head movement I will definitely do it again. Unfortunately I will not know for 7 - 10 days how much it will help. At the end of the day, the overall botox experience could have been much worse. Now I just hope that in a couple of days my head starts to slow down. On the other hand I wish the doctor would have paid more attention to my wobbling when standing. Something either needs to change soon with them or I think I might need to invest in a cane. I don't want to use a cane, but it will help me when my knees buckle by giving me something to brace myself on. It will also help me when standing. I will be able to lean on the cane to reduce my wobbling and hopefully make it more managable. I am not ready to use a cane, but I am quickly coming to the realization that it is problem a neccisity. The next problem is find the money to buy one... I honestly can not complain to much. My ankle is slowly getting stronger and I have actually managed to play outside a couple times, plus take a couple short walks with my wife. Hopefully soon my head will at least slow down. All positives, nothing to complain about there! As I have mentioned before not that long ago I was the class clown if you would.
In high school I was that guy that always pestered people. One person that I sat behind for an entire semester I would push there books off of he bottom of their desk and make them jump. Make them jump in class which would cause them to squeel. Another person I would hide their purse or just kind of torment them. Now I was not bullying these people, while I was doing these things they were almost always laughing about them with me. To this day when we talk about them we still laugh about them together. When I went christmas shopping with my wife I was a goof. I would hold up the skimpy bra and panties and parade around. No silly hat was save from me, because I was going to model them. I was even my wife's earing model for years. While yes this stuff is a bit childish, it never failed to get a good laugh from all of us. Shoot during family get togethers we still laugh about these things. Even at work I was always kind of silly. When I first started working on the foundry floor I just might have taken part in water fights, pranking others, etc. Even when I was a manager it was not uncommon for me to lighten the mood on the floor. I could step out of my office and yell, "HEY YOU GUYS", from the movie Goonies and gave the entire floor rolling. I have always been the guy to make people laugh and smile. Not only did it make me feel better but it also made the other person feel better. Who does not love a good laugh? As my symptoms have progressed I have done this less and less, but that is still part of me. I have not lost the ability to make people smile and laugh. As many of you know my wife and I help an elderly widow that lives a couple blocks away from us. In reality my wife does most of the helping lately as my foot has slowed me down, but when I am at the ladies house many times I feel like the old me. No matter what is doing on if I am at the ladies house, one way or another I can make her laugh and smile. It might be me kidding with her running marathons around her house, about all of her boyfriends lining up to greet her after we leave, or telling her I am taking her into her shower. Normally the shower one gets her rolling, almost belly laughing. Seeing that smile on her face is heart warming. For that short moment she forgets about all that ails her. Just the other day she got into the game. My wife and I went over there to help her out with a couple things and my wife stayed outside forever. Neither of us knew what my wife was doing. So to my surprise she gave me the business. She old me, "Maybe my wife is in her basement with her boyfriend". Man did she laugh, full on belly laugh, every part of her was having a blast. This is the first time she gave me the businees and it was great. I can not tell you how good it was to see her being the silly one. You could tell she was having a great time and she was the one doing it. I am sure that she felt good until we left that day because she was smiling until we walked out the door. Don't be afraid to let your inner kid out! You might be surprised at how good it feels to just let loose a little bit. You might even find that it is infectious and those around you might join in. Kind of like the lady we help. I am not normally a very nervous person.
I do fiddle with my ring when talking to a group but I don't mind doing it. In many cases I actually like doing it. When I was working there were multiple occasions where I had was the only person representing my company and I had 4 or 5 people from another company. Even when I stared new jobs, I was not real nervous. But I am nervous for tomorrow. Tomorrow I am going to get botox injections in my neck. The hope is that the injections will help reduce my head movements, maybe even stop them. If it is affective it will probably only last for 3 months, but 3 months of not having my head move around non stop would be a good thing. I am nervous because I have heard some negative things about the injections. From what I have read they can be extremely painful. I have also read that you can get the "botox flu", or simply put you feel like you have the flu for up to a weak that makes you really tired. Being Narcoleptic I don't think that I need anything to make me any more than I already am. On the other side I have nervous excitement. If the treatment works I might actually be able to nod yes or no to someone again. I would not have to worry about people looking at me as my head moves around constantly. I would not have to worry about the days that my head moves to much or to far and my neck hurts. It would be really nice for something good to happen in terms of my health. I have some pretty mixed emotions about tomorrow. But in the long run it is worth it. Heck even if I do end up with the "botox flu" for a week, 2 months and 3 weeks of relief is worth it. Heck I would even take just a month of relief. Anything to make part of my life feel normal for a bit is welcome. So while I am nervous about how tomorrow is going to go, I can't wait to go to the doctor and get this done. I am hopeful that, even if it is temporary, I might not have to fight my body for a while. I am hopeful that at least for a little bit I can stop fighting my head. I do my best to stay positve. Being positive is best for me and for my family.
Unfortunately I can not be positive about everything. I am really struggling with how my family is going to continue living in our house much longer. I think that we have done a pretty good job so far. We made it nine months with very limited income but that doing good no longer matters, we are out of money. I have created a GoFundMe account and after the first day we were doing pretty good. We raised more money than I ever thought we would have done in a day, but that moment seems to have completely died. In the last couple days we have seen no movements, we have received a couple more shares but no more donations. We have had others provide us help to. One famiy has purchased shoes for one of my boys and purchased many schools supplies for the upcoming year. Another family is going to purchase my youngest boys backpacks for the upcoming school year and pay some money towards our power bill. I am greatful to all of these families. Honestly we already received more support than I ever thought we would. At a minimum this support should help gets us through most of August. The problem is that is only one more month and not really all of it. I have always believed that hard work would be all that I needed in life. I applied that thought for the first 36 years of my life and all in all it worked. Yes I had bills, but my family had everything that we needed. We were not hurting for anything. Unfortunately hard work doesn't help me now. I still think that hard work is a good thing. It is what allows me push through my symptoms and be a part of my family. Of course that hard work has some pretty negative side affects. After pushing through I crash in many different ways. But the most consistent issue that I run into is that standing in place becomes quite a chore. On top of that walking becomes quite hard as my knee starts to buckle again and my left leg starts to shake, almost like all of my strength is being sapped out of it. Short version, hard work won't allow me to go back to work. I might be able to push through for even a couple hours but then I would be done and pretty much relegated to my recliner struggling to stay alert. So where does that lead me???? I am hopeful that I will get disability but if I don't or if I get denied and have to wait almost a year to go through the next appeal, what does my family do? There are no programs out there to help a family that long. Shoot there really are very few programs to help a family in this situation. So what do we do? My wife and I are already discussing selling a vehicle. That might give us a months worth of money. But what do we do from there? We never lived a real high scale lifestyle so we have few things of worth to sell. I have been given a couple names of local politicians to try and contact. From what we have been told they have helped speed up other people's disability claim. I will be following up with that tomorrow, but I don't have much faith that this is going to happen. I had two goals growing up as a kid. The first was to have a happy family. I think I have achieved that. The second was to make sure that my family did not have to go through the struggles that I did as a kid. I wanted to be able to provide my kids with a stable home and make sure that they did not have to move around like I did. Now it feels like I am not going to be able to live up to that goal. The struggle is very real in my house these days. Hard work can't fix this struggle! For the life of me I don't have an answer on how to fix this problem. No matter how hard I try I don't have a solution to this problem. On the bright side, I will still wake up tomorrow and I will keep fighting. I won't give up on my dreams of keeping my family in a stable home. I won't give up on my dreams of keeping my family from moving around. If nothing else I am stubborn and I will put everything that I have into finding a solution to this problem. So far narcolepsy and dystonia have knocked me down, but they have not been able to keep me down. This is round two and I don't plan on giving up! ,I normally try to stay away from politics and current events because they are so controversial, but today I felt I needed to say something.
All of this killing simply needs to stop. I don't care what color, size, shape, etc a person is, no one deserves to die. No matter how you spin it everyone deserves to live. It does not matter if they are criminals, saints, cops, or an ordinary person. I really think that instead of focusing on race and job title, we as a society, need to focus on saving everyone. It starts at all levels of society. At the foundation, or our own homes, we need to teach our children to do the right things. Teach them right and wrong, we need to be parents not friends. We also need to teach them to respect everyone, we need to stop teaching our children to be racists. Yes I know that this sounds strange for a white male to say but it is the truth. We need to teach our children that there is no color. I honestly can say that I have raised my boss that way. I have raised them to ignore color, to be friends with everyone. I think overall I have been successful at doing this. My children have friends of all ages, shapes, sizes, colors, etc. At the next level, our police. As a society we need to make sure that they feel more comfortable at their jobs. While I know many people will scoff at that thought, but it is the truth. If the cops are fearing for the lives on a daily basis, they are naturally going to fight for their lives when they feel threatened. When their brethren (brothers) are shot and killed while they are at a peaceful gathering they are going to be scared. What happens when anyone is scared, generally they fight to sustain themselves. So instead of attacking with them, why don't we work with them. Why don't we try to help them find and fix the issues in their systems? Why don't we try to work with them side by side to solve the problems that our nation is facing? This includes the problems in the police force and our communities. I know in my community and many close by there are too many senseless killings. 99% of these killings have nothing to do with the police. They have to do with citizens killing other citizens. In my opinion if we focus our energies on stopping people from killing other people and fixing issues in the police force together as a unified force we might actually solve some problems. If we continue to attack, we will solve nothing. My guess is we will cause more senseless killing. In my personal experience, aggression, no matter what the reason, never turns out good. When I worked in HR, I did everything in my power to not shout back at those people that yelled at me. Because I was able to keep my cool I was able to think clearly. Those shouting at me were all over the place. The majority of the time they left my office not getting what they wanted and I continued on my way. I think this applies to what we are seeing now. As a society we are responding very aggressively to a situation. No matter the reason for the aggression, I think the message is being lost. Does anyone know what the message was at the peaceful protest in Dallas, NOPE! Everyone remembers the police getting killed not what the protesters were saying. This aggression did nothing but make the situation worse. We as a nation, need to stand hand and hand, shoulder to shoulder, and work together to fix the problems we are facing. That is the only way that these problems will ever be fixed, as a team! What do you do on the second full day of not having to wear a walking boot?
Me, I had a picnic. My wife, two youngest boys, my wife's best friend, and her son all had a little cook out, (my oldest could not attend because he had a performance out of town). After a couple hiccups, forgetting to get buns and going to a park without a grill, everything went pretty good. We had hot dogs, brats, and burgers. They all tasted pretty good if I don't say so myself. After eating me and the boys played keep away with a football. While it was awfully warm, it was still a good time. This is the first time that I have actually, "played" since my boot is gone. While I did not run around with my usual vigor I had a blast. It felt good to be the normal me. After playing we went back to our house as it was to hot to do much of anything else outside. After sitting down for a bit, to give my ankle a break. I had already done more in half the day today then I had done in the last six months. Then..... I played in the sprinkler, ALL of us. I probably looked a little silly wearing shoes, but I did not want to slip on the wet grass. Shoes and all I had a blast. I can't tell you the last time that I played in a sprinkler. The boys and I played some form of tag with a ball. Really what it was does not matter, all that matters is we all had a good time together. We played for a while. The boys ran around like yahoos and I kicked their butt in their game. Even in my slower form, (six months in a boot and you move a bit slower), I can still hold my own. Honestly it would not have mattered if they would have kicked my butt. I had fun once again being able to play outside with my boys. I am sure my ankle is going to bit sore tomorrow, it already is, but it was worth it. I just can not explain how it feels to be able to move around and play with the boys again. Six weeks in that boot was killing me. It felt good to be me again! My wife and I were watching a movie tonight and there was a scene in the movie that really made me think.
There were two terminally ill children that were talking to each other. One of them asked the other if they were afraid to die. That simple question really hit home with me. Yes I have some really crappy things going on with my health. Yes my wife have a crappy illness. And yes my family is dealing with a pretty crappy financial situation. But the key is, we are still alive and we are still together. Things could be so much worse. As I heard someone say recently, we could be pushing up the daisies. Yes we most certainly have a tough road ahead of us. But we know that we will wake up tomorrow. Yes it might be another day of fighting, but we have the ability to fight. Not everyone can say that. Life has thrown me and my family more curve balls than I can count. We have swung and missed at many of them, but in the end we have hit enough to keep on fighting. As long as we don't give up no one can take that away from us. Luckily for us we area family of fighters and we will never give up. Remember even on your worst days, those days when you think everything is crashing down on you, there is always tomorrow. Tomorrow is another day. Tomorrow you will win the battle because the war is not over. It is not over until you give in. As long as you never stop fighting you can NOT lose the war! Well, I had my last check up on my ankle.
Finally, I had some good news. The doctor told me that my ankle is healing. It probably won't be 100% healed for another 8 months, (apparently it takes about a year for a break to completely heal - who knew) but I can start using it. No more hot box of a walking boot that turns my leg into a giant ball of sweat and makes we walk on my left tip toes. Now the trick is to make sure that I don't over do it. That is probably the hardest part. I tend to do everything at 100%, always have, most times it has done me well. But to make sure this stupid ankle heals and does not break again I have to take it easy. Wish me luck on taking it easy, I probably need it! :) The other hard part is to some how keep my youngest son's excitement containted. He was over the moon happy to hear that my ankle is getting better. He has been itching to play outside with me since I hurt my ankle. My wife said that when the doctor told us that me I could wear a shoe he was doing everything in his power to try to hold back a huge smile. Of course he was not successful in holding back that smile. If you add the support my family has received in the last couple days and I would say things are starting to look up. The week is has been one of the most positive weeks my family has had in a long time! I have officially reached the 200 blog level. I think the best way to usher in the next two hundred blogs is to make a positive blog.
There was been way to much negativity in the world and heaven knows way to many negative things happening in my life lately. So this blog is going to be a very simple one. I am going to create a list of positive things in my life or that have happened in my life. My hope is that my list helps spur positive thoughts of your own. Maybe you might even make your own list. Or maybe you will just make a mental list. So here it goes: 1. The day I started dating my wife 2. When my wife's family excepted me 3. The day I married my wife 4. The days that my three boys were born 5. Each of my boys first steps 6. Each of my boys first words 7. The first day of school for each of my boys 8. Seeing my boys growing into young men 9. Watching my oldest boy walk across the stage 10. Seeing the joy in my oldest sons face when he was accepted into his preferred college 11. Seeing my youngest boy try to keep from smiling 12. Hearing my boys laugh 13. Hearing my wife laugh 14.. Seeing my boys faces light up when they like something 15. Seeing my wife's face light up when she likes something 16. Having my dog greet me at my bedroom door everyone morning 17. Having my dog climb up on my lap and falling asleep 18. Having my cats curl up in a ball on my lap 19. My high school graduation 20. My college graudation 21. Buying my home with my wife 22. Buying my first car with my wife 23. The day my sister graduated from college 24. When each of my nieces and nephews were born 25. The day I started my first real job out of high school at Reynolds Wheel International 26. My first day working in the office as a Training Coordinator 27. My first day working as a Quality Manager 28. Taking walks with my wife in the mornings 29. Watching the sun rise with my wife 30. Watching shooting starts with my family in the front yard 31. Going to California with my wife to celebrate our 10th anniversary 32. Watching the sunset on a beach in California with my wife, just the two of us 33. Playing cards with the boys 34. Playing Magic The Gathering with the boys 35. Playing board games with my family 36. Playing dice games with my family 37. Going for a run with my wife 38. Going for a run with the boys 39. Going for a long bike ridea by myself, just me and the open road 40. Going for a bike ride with the family 41. Going on a bicycle camping trip with Anthony, Jamie, and Zach 42. Going on a 50 mile bike ride with Jamie and Zach 43. Redoing the second floor of our house as a family 44. Going fishing as a family 45. Going fishing with my father 46. Going camping with my father 47. Playing outside with boys 48. Playing in a volleyball league 49. Going to Pennsylvania on a family vacation 50. Going to Washingtn D.C. on a family vacation 51. Going to Minnesota on a family vacation 52. Going to Iowa on a family vacation 53. Going to Chicago on a family vacation 54. Going to Ohio on a family vacation 55. Going to Marco Island, Florida for work, twice 56. Coming to terms with having narcolepsy 57. Staring to blog 58. Receiving a stuffed dog for my birthday and seeing my son's reaction when I liked it 59. Watching Eric open batteries for christmas 60. Reliving all of the funny family stories at family get togethers I could keep going but I think this is a pretty solid list. While I can not deny that I have had some bad happen in my life, I can not lose touch of all of the good things that have happened. If I was able to come up with this list in less than 30 minutes imagine what I could do with a couple hours. Or maybe a day but also having my wife help me. We could probably make pages of positive things. The lesson here is that you can not forget the bad in your life, but you can NOT forget about the good things either. My guess is that there are more good than bad in your life if you really think about it. On another note please share my GoFundMe page, we are trying to raise funds to cover our bills for the next three months. gofundme.com/2fm7k8c I received an update on my disability claim today.
We are looking at some where around three more months before we get an answer on my disability appeal. This poses quite a large problem. My family is essentially out of money. We paid our bills for July and we don't have enough money to pay for our August bills. Because of this we are doing everything in our power to ensure that we keep our family afloat. To do this we have created a GoFundMe account. This is a pretty big step for me as I am a pretty prideful person. Through out my entire life I have always done my best to do things on my own. Always felt that it was better to do the work to get what you want. There were only a couple times in my life where I asked for help and each time it pained me. But each time I did it because I had no other option. Well I have reached that point in my life once again. I am not able to work and unfortunately it does not look like that is going to change. I am working on trying to get disability but anyone that has gone through the process knows that it is a very long and ugly process. My hope is that with my GoFundMe account will be able to raise enough money to cover my families bills until I complete the disability process. The link to my account is the following: gofundme.com/2fm7k8c All I can say is hopefully the botox injections that I am getting for my cervical destonia works!
When my head first started moving it was not an all of the time kind of thing. Yes it happened more often than I wanted but it was managable. In all reality it was just an annoyance and there was usually was no pain associated with it. Sometimes my neck would get "stuck" but that was a very rare occorance. The further I have gotten away from the initial onset of the head movement the worse it has gotten. The next stop in the progression was my head started moving more than it was not. If I got stressed or the more tired I was, (doh kind of always tired being a narcoleptic). The movement started becoming more than just a nuscences. I started becoming embarrassed because my head was always moving. On top of that being that my head did not use to move I sometimes would forget it was moving and try to nod to answer someone. Obviously that did not work so well as my head was already moving. Also sometimes the movement added another layer of difficulty to eating. If I was having a particularly bad day, I would have to very carefully move my food to my mouth to ensure that I made it in my mouth. Tonight I have reached another level of crap. My head is moving so much and with such vigor that my neck is simply killing me. The best I can describe it would be the muscle pain you feel the day after your first workout after not doing anything for months. Every muscle really hurts. Well right now the entire back of my neck is just one ball of pain. No matter what I do I can't seem to even slow the stupid think down today. If I try to "stretch" my neck to one side, (a trick that in the past has at least slowed my head down) nothing slows down and it just hurts even more. From my limited research in dystonia I know that some people's necks start to get frozen in place. Essentially their heads get stuck in an awkward position and it does not move. I am starting to get a bit concerned that my head movements are moving in that direction. At this point the stupid movement has nothing but gotten worse..... Here's to hoping that the botox treatment that I am getting on the 27th is as successful as it has been for many others! I could really use for something in my health to improve instead of continuing to degrade as it has for the last two years! My how quickly thinks can in your life flip.
Less than an hour later my oldest son comes home and gives my wife four dollars. He asks both of us if we could find something for my youngest son to do so that he could earn those four dollars. My youngest had given his last four dollars to contribute towards birthday gifts. This kid has such a great heart that he does not care how much money he actually haves. He just wants to make sure that everyone is as happy as they can be. So what is wrong with that? Nothing! The problem is that because of my health issues and no longer being able to work, we can no longer give him an allowance. That sucks on so many levels. First of all this kid is a great saver. When he was getting his allowance he saved quite a bit of money up. The second part was that while it was not a lot he always wanted to buy gifts for people. Take for instance my stuffed dog. He just wants to make people happy. The last part, is while the kid does not have a bunch of wants, he would really like to buy himself some Magic The Gathering cards, (a collectable card game). He loves playing the game with me and his brothers and he just wants to get some new cards for himself. But because he no longer gets an allowance he can't do that either. When something like narcolepsy and dystonia take so many things from you, you tend to forget about some of the little things. Alex had a very small allowance and in the big scheme just a very small blip on my radar. But today I saw that this small blip is a huge thing. Today my eyes where opened to the fact that this small blip to me is something big to my son. He has not complained once about the loss of his allowance, he has taken it like a trooper. He has not really even complained that his money is dwindling down to nothing. Heck the kid is willing to give his last bit of money away to go towards gifts, (to help the family). I want nothing more than to allow him to earn his small allowance again and do the things that he wants, but I can not. My diseases have taken that from me.... In a short hour today I have went through an emotional roller coaster. First my heart was lifted when I was able to make my son's tears go away. Then my heart sunk as I learned that same son gave away all of the money that he owned. It did feel good that my oldest wanted to ensure that his brother did not lose all of his money, but not good enough to overcome the hurt I felt for my youngest. As a parent you want to be able to shelter you children from the pain of adult things. I have not been able to do that. My health is exposing my children some very adult things that they should never be exposed to and there is nothing that I can do about it. Now that exposure is starting to hit home with them. Most days I am at peace with my health and while I don't like it, my health is what it is. But tonight, I am down right ticked at it. I really can not stand what my health is doing to my life and my family. We, my family, just need one stinking break. I sure would like it if I got a call tomorrow that said my disability was approved. While it would not fix everything, it sure would elevate some of the problems and I would be able to give my youngest his allowance again. He would be able to do the things that he wants to do again. He can buy those couple dollar gifts that have the most meaning because you know there is truly pure love behind them. I want him to be able to be a kid again! Sometimes as an adult you forget the power of a stuffed animal.
For my birthday my youngest son gave me a multicolored, (bright rainbow colors) stuffed dog. As my wife told me when he saw the dog he knew that it as the perfect gift. They looked a bunch of other things things but he simply kept coming back to the stuffed dog. On my birthday I opened the gift and I thought it was really cool. On top of that I did not have any stuffed animals. Since I received the dog when I sleep in my chair in the living room I sleep with the dog. I kind of hug the dog and quickly fall off to sleep. Needless to say Alex was over the moon happy that I not only liked his gift but also napped with it. Tonight he came downstairs because he could not shut his mind off. He was crying and pretty much in a bad place. My wife was talking to him and trying to call him down. She was somewhat successful but he was still sad. This is where the power of a stuffed animal comes in. I asked him if he would like to sleep with my dog tonight. He immediately went into his trying to not smile face. You know that silly face that most kids have when they try not to smile. Boy he was there and there was no faking it. All of his worries melted away right then and there. As he was on his way back upstairs I asked him if he knew what the dogs name was. He said no, now actually smiling. I told him that the dogs name was puppy. He smiled back at me and asked, "really??" I confirmed the name and off to bed he went, with his worries forgot for the night. Sometimes the smallest things have amazing power! I am sure that many of you have been asked a simple question countless times. Why do you do that when you know it is going to wipe you out?
I know I have heard that or a form of the question many times. The answer is really simply to me, while I am doing what ever the task is, I almost feel normal. Between narcolepsy and dystonia so much has changed in my life. So many things that I was able to do in the past I can no longer do or it is in my best interest to make sure someone is with me. Take for instance cleaning. In the big scheme of things it is not my favorite thing to do, but there are times that I need to do something. With a my broken ankle I am supposed to keep my foot up and limit how much I move. So this makes me sit in my chair way to long. I crave to do something, anything normal. So, to clean parts of the house, it least for a little bit it makes me feel normal for a little bit. At least in the beginning there is enough movement to keep me awake and because I am constantly moving I don't sway around. Many times my head does not shake either. It might sound silly but I feel like a normal person. Am I going to crash later, probably. Is my ankle probably going to swell, probably. But I don't really care. Doing that little bit of cleaning makes me feel like good. Strange but true! Sometimes just doing something other than sitting around gives me a break from being me. It does not have to be a large task, just something big enough to make me feel normal for a bit. Take for instance today. My wife and two youngest boys went down by the river. My middle son did some Pokémon Go, my wife took some pictures, and my youngest son tossed a football around with me, (he was keeping me going). Was there a good chance I was going to crash, yep. In fact I did, when we started to walk to the car my right knee buckled pretty good, (cataplexy) and my stomach was firmly sitting in my throat. But you know what, when the crash was worth it. While walking and playing catch with my youngest son I felt like a regular person for a little while. It was worth the knee buckling, the crazy head shaking, and the swaying. The only problem is many times when I do these things, everyone around me gets concerned. They worry that I will crash and that I wont be able to do anything else later. This might be true, but if I have a chance to feel normal for a little bit, I need to do it. I think that sometimes those that support us have to allow us our moments to feel normal. Yes they will probably pay for it in the long run as they will probably need to help us, in the long run it is probably more beneficial to everyone to give us those little moments. As a way to change up some of my blogs I have decided to make some challenges here and there. I will always back up the challenges for perspective and I hope that whom ever reads them at least gives them some thought. With that said on to the challenge.
Lately across many of the support groups that I am apart of there has been much more negativity than positive. It makes sense as these group are for people with chronic diseases, but that does not mean that the people in these groups should always be down. They deserve to feel good just like everyone else. So I challenge you to pick something small that makes you happy. It could be having a giant bowl of icecream, go for a nice long walk with your best friend, jamming out to your favorite music, whatever. The key is to simply find one thing that makes you happy. Once you find that one thing, you need to do it. While this sounds silly, it really is not. Make time to do something for yourself that you really enjoy. Even during your worst days if you carve out enough time and energy to do this one small thing for yourself it will perk you up, at least while doing it. Then during the remainder if things get hard, just remember the joy that you just had. For example my little moment of joy was about a 10 minute window right before I took my nap today. I had just finished eating lunch and cleaning up the dishes. I was already pretty tired as I was dragging at 8:30 none the less almost 5 hours later. During that ten minutes I simply wrestled around with my sons. All four of the boys, me included, where laughing and have a good time. There was not one of us that was not smiling and laughing. Everyone was in on the rough housing, no one got hurt, and we all just had fun. Sure I was tired when I started and really tired when I finished, but it was a great time. I have aways loved wrestling around with the boys and we have not done it much in a long time. Having all four of us wrestling around was just a blast. While the remainder of my day was pretty good, if I had a low moment all I would have done was go back to those ten minutes before my nap and I am sure it would have brought a smile to my face. So tomorrow carve out a little time and a little energy to do that one thing for yourself. Put your all into and start in the moment. If you really do it, you will have a little bit of good in your life that you can fall back on to pull out of the bad times. I have blogged about not taking things for granted in the past, but I talked about bigger things. Driving, being able to work, etc...
Things have continued to change in my life and my concept of what to not take for granted has changed. Yes being able to drive and being able to work are important things in a person's life, but honestly they are the small things. How about being able to stand in one place. This is something that pretty much all of us take for granted. Really, who thinks about standing in place, not that long ago I did not. But for the last 18 months I have thought about just that, standing in place. 18 months ago I started swaying while I attempted to stand in place. Initially it was a once and a while thing, but much more common the more tired I was. Today, there is not time that I don't sway. I sway while in the shower, using the bathroom, cooking, etc. There is no time in my life when I don't sway. Just yesterday my wife and my two youngest boys went for a short two block walk. In the middle of the walk we stopped at the boys grandmother's house. Luckily for me I had a ball to throw around for another stimuli. At one point I was attempting to stand in place and my youngest son was standing directly in front of me. My wife asked how I was doing and I said moving as usually, joking about my swaying. My youngest son looks up at me and says that is why I am standing here. He was standing in front of me in case I needed to grab something to ensure I did not fall. While it was very touching that he was looking out for me, it was also very humbling. An eight year old should not have to look out for his father. An eight year old should not have to worry that is father can not stand in place with out falling. A mere 18 months ago standing in place was not something that I even thought about, today it is on my mind everyday. Another thing most people don't think about is sitting in a chair. You know a regular old straight back chair. The ones that you find everywhere, restuarants, kitchens, offices, etc. These chairs are everywhere. Well I think about this everyday. I can only sit in a chair if I am reclined. If I try to sit in any regular straight backed chair I will start to rock back and forth and some times side to side. While in the big scheme of things this does not hurt me or anyone around me, it is quite embarrassing. I don't like rocking around in a chair. On top of that sometimes this movement can make eating problematic. Think about trying to put food on your fork while you are moving around. Your target is not moving but you are. Or think about trying to use a spoon. If you manage to get you liquid on your spoon, now you have to try to make it to your mouth without spilling everything. Luckily I don't always sway while I am eating, but many times I do. Not that long ago this was not something that ever crossed my mind. I did not care where I sat, except for trying to make sure that the chair was comforable. Beyond comfort I did not give a leap. Today, I try to avoid sitting in anything other than my recliner. I don't like the feeling of swaying and I don't like the looks I get. Sitting is something that I think about everyday. While this sounds all bad it is not. My priorities have simply shifted, quite drastically, but just shifted. I know longer worry about working or driving. While money is a huge thing, there are so many other things that are so much more important. I would love to be able to drive, but I simply can not. Unless some miracles happens I will never be able to drive again and I am OK with that. My priorities are now all about my family. I try to give every bit of my energy to my family. They are the most important thing to me. Even on my worst days I try to give everything that I have to my family. I look forward to those little moments. Just the other day my family went to Culver's to have icecream, (we had coupons for free one scoop sundays). On the way back we decided to drive around town as they played Pokémon Go. It was fun to here them laugh and joke. Asking my wife to slow down so they could collect something. Just hearing the joy in their voice was worth fighting to stay awake in the car. Even yesterday when my youngest son said he was standing in front of me in case I needed him. While I never want him to have to worry about that, it was very heart warming to hear him say that. He is turning into the type of young man that I want him to be. He could have been running around or countless other things, but he wanted to make sure that I was ok. That act of kindness is something that countless adults would never think about and for him it was almost second nature. It is moments like that, that make it easy to fight every day. Hearing my kids laugh and joke, seeing your child become a young man are the really important things in life. Being able to drive or working are no longer the drivers in my life. My drivers are my three boys and my wife. They are the ones that give me the strength and power to fight everyday. They are the ones that have helped me focus on the important things. Look at your daily lives, look at the things that you worry about. Are these things really important or are they something you can let slide. Remember life is fleeting and things change faster than you can ever imagine. Make sure to keep the really important things on your mind even if you think they are small things. Tomorrow those small things might be gone, would you be ok with losing them? I knew after a two day trip to Chicago last weekend that I would be feeling rough, but I did not know it would hang on this long.
On Sunday I slept for 12 hours, woke up and immediately started crashing. My stomach turned on its end and I was feeling like crap at best. As I had already slept for 12 hours I knew the only thing I could do is to distract my mind by doing something. I ended up doing something with my kids and that helped but the moment I stopped I started crashing again. Pretty much for the time that I was awake on Sunday it was pretty much the same. I was either able to distract my mind enough to just stave off a crash or I would go into full crash mode. But I made it through the day. I knew it was going to be a bad day, Monday was going to be a better day. Well I was wrong on that one. So far every day this week I have struggled even more than usual getting up. Even when I do manage to drag my butt out of bed, by the time that I use the bathroom I am already losing the battle. I am starting to crash and apparently my crash for now is just to make me feel like utter crap. Constant feeling of needing to throw up and barely able to keep my eyes open. As quit is not in my vocabulary I have continued to fight. But my ick just ratcheted up yesterday. I helped my wife fix a cupboard shelf that had fallen. No big deal I got it back up and helped put things back on it. A couple minutes later the lower right side of my back started to hurt. As I was dragging pretty bad my wife convinced me to take a nap, as much as I hate to admit it I needed it. Unfortunately when I woke up from the nap my back was even more painful and I instantly went into a crash again. Ohh well, par for the course for this week. When my wife and I went to bed last night my back really went haywire. Just trying to move and take off my boot was almost putting me into tears. Mind you other than helping with the shelf I did nothing. I did not even feel anything when working on the shelf. One of my boys brought me some Advil and I went to bed. Wahoo for narcolepsy, really sore back or not, I was out in a minute. This morning I woke up earlier than I have the rest of the week and I was hopeful that I had turned the corner. Again I was wrong. I did not even finish using the bathroom and I started crashing. I sat in my chair in hopes of going back to sleep, but unfortunately my super power to sleep anytime failed me, between my back and feeling like ick I could no go to sleep. I just kind of sat in a zombie state, in and out of consciousness for about an hour and a half. Finally I was able to go back to sleep on the couch for a bit. My wife once again convinced me to take a nap, I did not want to because I feel like I am losing so much time sleeping lately but once again I could no argue with her. I slept for close to three hours and woke up on the edge of a crash. On top of that my entire lower back started to hurt now. After eating supper my wife and two youngest boys to a short walk, 2 blocks. My wife wanted to get me out of the house as I have not been doing much lately. I took a tennis ball to provide me with another stimuli. Earlier this year I found out that I could walk at a slower pace if I bounced a ball off the sidewalk and caught it. Essentially it just adds another stimuli to keep me awake. I made it through the walk ok. My knee buckled a couple times, (cataplexy) but nothing to bad. When I walked in the door of our house, I started to crash again. Needless to say I am getting a bit annoyed with the way this week is going. On the bright side of things I did find a pretty good support group for people with movement disorders. It has provided me with quite a bit of information on dystonia that I was not able to find on the net previously. So while the weekend is kicking my butt, still, I would do it again. If I would not have attended the Narcolepsy Meet Up I might not have found this support group. There is always a bit of good in everything, no matter how much bad is present. You might have to look hard, but there is something good there. Try focusing on that good thing to pull you through. As you all know I was at a narcolepsy meeting this weekend.
One of the presenters was a Neurologist with quite a large amount of knowledge on narcolespy, I would even call her an expert. Apparently she also has some experience in movement disorders. I asked her about my swaying when standing and sitting. She gave me a boiler plate answer while presenting but she talked to me later during a break. She came up to me during the break and told me that she agreed that I have cervical dystonia. She went on to say that my swaying while standing and rocking when sitting reminded her of axial dystonia. She said that axial dystonia has to do with the muscles of the trunk, (chest/belly) of your body and can cause you to move like I do. I have since done some research, albeit limited, on axial dystonia and it does fit. It would make sense why my MRI is negative and all of the doctor's that have treated me so far were clueless on what is going on. Unless they were specifically movement specialists they probably would not have been aware of axial dystonia. Now the negative side of things. She said that the botox treatment that I am getting in a couple weeks for my cervical dystonia might help with my swaying, but it is not a guarantee. She went on to say that there is not a lot of treatments for axial dystonia. She did not expand on why, but my guess is because it has to do with so many muscles it would be really hard to treat it. So if the treatment for my neck does not help with the swaying it appears it is staying.... Of course the worst part is that this is also an incurable disease. That brings my count up to three incurable diseases now, WAHOO! On the positive side of things, more than likely, I now know what is wrong. My current doctor that is treating my narcolepsy is also a movement specialist, (he diagnosed my cervical dysontia) so I can get additional confirmation in a couple weeks from him. While that does not fix anything I can stop wondering and worrying about what is wrong. I already know how manage the swaying when standing, to a point. The sitting issue, I normally don't sit unless reclined and when I do I simply rock. If someone does not like it, to bad for them. In the long run knowing is better than not. I know that what is causing it is does not have a nasty end game. It is just something else that I have to overcome. I am not afraid of the diagnosis, it is just a word. Narcolepsy has not taken me down and this won't either. I simply have to be careful with what I do and keep pushing on. As I have said before, quit is not in my vocabulary, and this does not change it. Once a fighter always a fighter! At the Narcolepsy Meet Up last weekend I learned about elevator speeches. The basic concept is creating a speech that you can give in 30 seconds or less, about the length of time of an average elevator ride.
This speech is to be used to help you be an advocate for something that you are passionate about. The subject does not matter it should just be something that you are passionate about. It could be about why your sports teams is better than everyone else's, a disease, politics etc. Now the speech should have a couple things in it. The first is you want to make sure that it grabs your audiences attention. Something that makes your subject feel real to them. The second part of the speech is what you are looking for. For instance if you are talking about a sports team, you are trying to convince your audience that your team is the best. For me my elevator speech would be about narcolepsy, as currently it is having the biggest impact on my life. My speech would go something like this: "Narcolepsy is an incurable, life altering disease. In a scant two years it took me from working full time and being very involved with my family to no longer being able to work or drive. Because of this I believe that narcolepsy research needs to put to the forefront of our country." In my speech I opened with a small but hopefully eye opening snippet about narcolepsy. I then follow up with a very personal statement, in hopes to making what I am saying real. Then I end with what I am looking for, more narcolepsy research. This elevator speech is not perfect but it is a tool to help get my message across about narcoepsy. This speech can be used when someone shows interest in narcolepsy. The hope is that after giving this speech they would want to have more information and ask more questions. This would then provide me with an opportunity to help educate someone on narcolepsy. Even if I am only able to educate one person it will help spread the word about narcolepsy and hopefully increase the interest in it. My challenge to you is to create your own elevator speech. The speech should be about something that you are very passionate about. Remember to keep the speech short and to the point, but have something in it to keep it real and pull your audience in. You might not use the speech every day but when you are presented with the chance you will be prepared. This preparation will allow you to talk intelligently and hopefully pull your audience in. Then the rest is up to you. Remember no matter how bad today was, tomorrow is another day. Tomorrow will be better! My family was watching American Ninja Warrior today and there were two stories that I found quite inspiring.
The first story brought me back to when people ask me how I do as much movement as I do, (before the broken ankle). My answer has always been simply, I don't see any other option. I want to be awake and alert and the movement is the best thing to accomplish that. But this story gives me another explination. A competitor on the show was a married father of two girls. Unfortunately his wife was dealing with an advanced form of Ehlers-Danlos sydrome. Plus the family just found out that their 2 and 5 year old girls also had the same thing. The husband was a true hero. He helped care for his wife, worked, and was a great father. Plus one other thing.... His wife had always wanted to compete in a obstacle competition but her disease never allowed her to do that. So this man started training and training very hard on top of the other things he was doing. But not only did he train, but he turned himself into a world class athlete. He didn't just compete in American Ninja Warrior but he also completed a stage. This is quite a feat because most the competitors on this show fail. This man turned himself into a world class athlete to help his wife see her goal come true through him. Seeing her face as he succeeded was amazing. Her smile alone would have been a driver for anyone. To me this story shows why people do things that others think are impossible. Your family can help drive you to do things that man people think are impossible. The second story was about a one legged man. He had lost his leg as a young boy because of cancer. Unfortunately they did not catch the cancer soon enough so they had to take his leg. This man did not let this stop him. He turned himself into a world class wrestler. He was at the top of his game. But he did not stop their. He decided he was going to compete in American Ninja Warrior. Now most able bodied people are not successful in this show. They have amazing fails, but that fact did not discourage him. As he step up to start the run he had his prosthetic leg on. Now this made sense as the first obstacle required jumping back and forth on small angled platforms. But he took his leg off to begin the race. To everyone's surprise he passed the first obstacle, mind you able bodied people have failed on this but he did not. He passed a second obstacle and then came to a third. This obstacle requires you to hold a big log with both your legs and arms. Then it spins down a ramp until it suddenly stops. One of the biggest keys was to make sure that you locked your legs as tight as possible. If you did not you were going to fail. So this man steps up to up to the log and grabs ahold. Everyone knows he is going to fall. There is no way that he can hold on spinning that fast with just his arms. But we were all wrong, It was not pretty but this man passed this obstacle also. Now he failed at the next obstacle but that does not matter. This man outperformed many able bodied people. He did not let his disability hold him back. To me he is also a hero. What both of these stories tell me is that while you might be dealt a bad hand in life, it is not the end of you. You have to refocus your energy and excel at something else. I honestly believe that when one door is closed on your another is opened. I, for instance am no longer able to work. That is a pretty big door to close on you. But it has opened other doors. I now have the opportunity to help others. It might be through my blogs, through chatting, in person, etc.... I am now able to provide some support to others. I would never even have thought of trying to help others while I was working. I challenge you to stop looking at what our might lost or what might have changed in your life and instead look at what you are doing now. Maybe you now have the chance to be the artist that you always wanted to be. Or you start writing a book that you always wanted to in the past. It does not matter what it is, look at the good in your life. Focus on that good and help it grow! Today in the Narcolepsy Meet Up a question was posed, "what does advocate mean?".
To me there are more than one answer to that. To me the first thing that comes to mind is being your own advocate. You have to be your own advocate. That means you have to stick up for yourself and make sure you get the care that you need. If you don't agree with your doctor's you should challenge them. If you feel that your doctor's are not giving you the best possible care, then you should look for another one. You need to make sure to put yourself first, because if you do not, there will be nothing of you to give to anyone else. If you are not your own advocate no one else can be your advocate. The next part of being an advocate is being an advocate for your disease. Now this does not mean that you have spread the word to politicians or become the face of your disease, it just means that you need to do your best to spread the word. For me this means, when ever anyone asks me about narcolepsy I will give them as much information as they want. Even educating one person can have a cascading affect. You can do more things if you have the tools, but it is not required. Simply educating those that want to be educated makes you an advocate. To me the last piece of being an advocate is helping others. This does not mean that you have to fix people's problems, give them money, or anything crazy like that. It just means helping others in what ever means that you have. For instance I blog, yes the blogging helps me, but others have told me that my blogs help them. The fact that I have even helped one person gives me motivation to continue blogging. I am also like chatting with others. Sometimes the chats are just to chat, other times it is simply give them a ear to hear their concerns, and sometimes I actually try to give them advice or help them cope. Helping others does not have to be a huge undertaking, just doing what you can do. To me their is one primary key to being a good advocate. Putting yourself first and making sure that you get what you need. Remember that if you don't make sure that you have what you need, there is nothing of you to give to others. I challenge you tomorrow to take a moment and look at your life. Are you being your own advocate? Are you challenging those that are supposed to help you, to ensure they are doing their part? Remember you will always be your best advocate! It is never to late to take up the task! Day one of the meet up is officially in the books.
The drive in was a bit rough, but what do you expect from Chicago traffic. Beyond that the day has went pretty smoothly. I was able to catch up with some old friends and meet some new people that have narcolepsy. Today was really about get comfortable with the group and having dinner. As in many get togethers everyone had to introduce themselves, but these introductions had a fun twist. We had to tell everyone something interesting about ourselves. As many of narcoleptics normally use having narcolepsy as their interesting thing many of us had to really think about it. There were a couple very memorable interesting things: - being able to blow air out their eyes (me and another person) - being able to put their toes in a thumbs up position, (they are double jointed) - playing professional tennis during the time that Andy Roddick did - being a current professional golfer - officially being labeled as a midget - being able to sing a song in pig latin The introductions were very interesting and they brought out some laughs and groans, but they were all interesting. Here is to hoping tomorrow goes even better. The worst thing about narcolepsy is that it is not the disease that messes with you. The disease messes with your sleep/wake cycles. It makes you tired when you should be awake and some times makes you awake when you should be tired. It messes with everything about your sleep. But that is not what messes with your life the most, it is your own mind that messes with you the most.
Because narcolepsy messes with your sleep your mind is in a constant quest to make you sleep. So it pulls out all kinds of tricks to make you sleep. Your own mind becomes your biggest enemy. Many narcoleptics you talk to will tell you that their symptoms rotate. That they don't know what they have to worry about on a given day because their symptoms change. Some times they have the same symptoms for a couple weeks and sometimes their symptoms change on a daily or even hourly basis. The reason for the the cycling is that your own mind is trying to force you to sleep, so it is trying multiple things to do this. For instance one of the bodies tricks to force you to sleep is to make your eyes burn and water. Normally the only method to get rid of this burning is to go to sleep. When you close our eyes the burning subides, if you reopen them they will begin burning again. Quite a nasty trick! There are other tricks to. One of the nastier ones is to turn your stomach into a thousand knots. You almost get an instant feeling that you are gong to throw up. You can eat and it does not get better. You can take Pepto and it does not get better. The only thing that you can do is close your eyes, curl up in a ball, and wait for sleep to take over. Another nasty trick is you will get a nasty migraine. You know the light, movement, and soul sensative types of migraines. There is no fighting through this, because everything you do puts you through more pain. Your only option is to go into a dark and quiet room, close your eyes, and go to sleep. Anther trick my mind throws at me is random shooting pains. I can be sitting in m chair doing nothing physical and I will get a feeling like someone is driving a knife through one of my muscles. Then instantly removing it, to only repeated do it over and over again. If I am able to "suck it up", then I simply get shooting pains in a different spot. Again the only tried and true method to making them stop is to go to sleep. Narcolepsy is a nasty little disease. It is not the disease itself that kicks your butt, it is your own mind. Essentially narcolepsy uses your own mind to torture you on a daily basis. Fun right! One amazing thing that I have found about people with narcolepsy, is that they are fighters. They take on their own mind every day. They stand up to the torture their mind puts them through every day and most days they do their best to hide that torture. I tip my hat to all the narcoleptics out their that fight themselves everyday. Keep up the good fight! Today might be tough, but remember that tomorrow is another day. Life every day to its fullest and never look back. Today is a new day and yesterday is long gone! |