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Category Archives: Multiple Sclerosis

My Answers to 5 Frequent Questions on Multiple Sclerosis

I’m one of those people who is not afraid to take time to talk to someone about the beast that is now part of my life. The beast is nothing that is seen upon my body. You do not see a creature hiding behind me, on my shoulders or hugging my leg. Granted at times it does feel like it is hugging both legs and even my arms. The beast is called Multiple Sclerosis.

I have blogged in the past about it and it is something I do plan on continuing to post new blog posts on in the future. I made it easy for people to find my older posts with a category titled Multiple Sclerosis.

This post is going to go into what I consider the five most frequent questions I get when I tell people I have MS. I will warn readers that I use humor, sarcasm and at same time I can be serious. You will find that within this posting and hopefully it opens your eyes to what some, not all may go thru with MS. I know from my point of view this is what I go thru. You are as always welcome to share this post if you so wish.

  1. What is Multiple Sclerosis?

I always am tempted to go with the medical explanation of how immune system will attack the Myelin around nerve cells, and blah blah blah. I can just picture the glass eyed look of how I could lose someone going into that so I often explain it in this way.

“MS is like your computer, brain, giving orders to your body telling it how to do everything from breathing to walking. It controls so much of our body and many of those orders go thru the nerves. Sadly MS is like when somehow, and unknown, those commands don’t fully work. It causes all types of computer issues when you get a virus, and MS can cause all types of problems with the body. Sadly it’s not a virus it’s something science hasn’t figured out yet.”

  1. Did they give you a time frame on life?

This one gets me to laugh a bit. I say that as really there is no expectation on when you’ll die due to MS, if it is even the cause of your death. I mean if you think on it the moment we are born we start by taking a big breath into this world. Every single breath after that first one could be our last.

So, we have to stop worrying about when it may end but instead worry how we spend that time. Do we worry about things we cannot control? Do we let a disease dictate our life expectancy? I say NO, as for me it’s a ride and I hope to enjoy it, stay within the law, and hopefully leave a mark of positivity. If I’m remembered for anything I just want it to be that I cared, I listened and I tried to help if I could.

  1. Do I get depressed, or was I depressed?

You know, I think those I first told about the diagnosis where more depressed, and unsure what to do then I was. To me it was a part of life, and I was not going to let it change who I was on the inside. This comes from a battle of depression in my early college years. I learned so much about myself and add in psychology course I took I learned to let things go. Sure I can get upset at times, who doesn’t. The main difference is I at least have learned what to do to overcome.

The biggest thing about depression, in my opinion, is not to run from someone looking to talk. Do not judge them, the best thing we can do is just listen. Let them express their emotions, the suffering that has put them in that bad place. Let them give you hints on how you may be able to help instead of just saying they need to do this or that. The biggest step for someone with Depression is the fact they talked about it.

  1. What are some of the symptoms of MS?

This is one that is hard to answer. You see we have heard that life is like a box of chocolates as we never know what we’ll get. MS, to me, is a chocolate store. I say that as there are various versions of the disease and each has its own symptoms that can impact a person totally different then the next person.

Me I had severe nerve pain and muscle pain in my arms and legs. My arms would suddenly start contracting in on themselves and was very painful. I got to a doctor and after many tests the diagnosis came back. I still have some of the common issues that come with MS.

  • I get pain at times in both my arms and legs.
    • Some refer to this as the MS Hug as you get a sense someone is hugging you deeply and won’t let go.
    • I also get a tingle feeling in the arms and legs.
  • Fatigue is the worst one to me. You get tired and really you can’t fight it.
    • I think of it as if you stayed up for over 24 hours and body is demanding sleep. No matter how much caffeine you may take to stay awake the fatigue is going to claim you.
  • Vision Issues
    • I have had a small loss of vision within in my left eye. I can see out of it but imagine looking thru a piece of paper with tons of little holes punched in it. There will be spots you can’t see and that’s my left eye.
  • Concentration Issues
    • This doesn’t happen all the time, or too often. I believe this is why I am one who enjoys the challenge of multitasking. It helps me bounce from project to project and back again. It can be a pain though and when it’s bad, well that’s what a “To Do” list is for.
  • Others
    • There are a few other things like I’ll get some numbness in my right leg/foot at times. It’s nothing to major but it does happen from time to time.
    • Emotions can be impacted as I have found I tear up while watching a movie for no reason. It maybe something I’ve seen for years but boom it happens.
    • Bowels, well I won’t go too much into this one as don’t want people running away going…..”EWWWW”. I’ll just say that when I have to go to the bathroom, sometimes it’s important I get there. Thankfully I have not had to buy a lot of new underwear or pants. HA HA
  1. Anything I can do to help?

I do like this question but I got to say it’s the hardest to answer.

  • I mean those who ask I’d love to tell them sure, take this thing from me. However, I know they cannot and to be honest would not wish it on them.
  • I’d like to go sure, got some money I can have? I mean before I got good insurance bills hit hard. Those I have joked with about that will say set up a Go Fund Me page or something. I just can’t do that, I think it’s my pride and well I keep finding a way to make sure bills, and mortgage are covered. Granted got to say at times…….well…..yeah. (Insert a smile here ha ha)
  • What can they really do most is do not feel sorry for me. I try to lead by example. I do not want someone feeling sorry as its life. As I mentioned before I am still taking a new breath and my time has not come. We live in a world of challenges and do not let the petty and stupid guide your life. Agree to disagree and continue being a friend. Agree to know what topics may be off topic and leave them out of conversation. Most of all understand I never been one to really put myself out there. In truth this blog is my way to do that, and I know I’ve lost many of friends in my life due to this part of myself.

I’ll add that MS is like many other diseases in the world. It does not matter who you are, where you are from it will impact people of all kinds. Some are more than willing to talk about MS, and others treat it like depression and hide the diagnosis. I personally do not care how one deals with the diagnosis as long as they DO NOT GIVE UP.  I’ll end this very long post with the one quote I often say to people.

“I may have Multiple Sclerosis but is DOES NOT HAVE ME!”

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Posted by on July 1, 2018 in Multiple Sclerosis

 

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Strong Legs and a Lesson

My original plan was to write a post on a book review but then I saw something that had me change my tactics. The source too many is hated and one of the worst news sources in the world, and that is Fox News. So, what could I find from there that would have me creating a blog post? I’m sure there are a lot of ideas running in people’s heads, but I’m sure they are in most guesses wrong. The title of this post may have given an idea, but what brought me to this post is simple. Her name is Janice Dean; she is a meteorologist for Fox News and most importantly has Multiple Sclerosis.

I’ve posted many blog posts about my struggles and issues with that disease but what I saw there had me change plans for this week. You see some viewer asked Janice Dean to stop letting Fox dress her as the skirts were not flattering on her. I got to say I have not watched Fox News in sometime, and to be honest I do not watch any major news outlet. I only saw this story due to the fact she does have MS, and I got to say she handled it gracefully. The key thing she let that body shamer know that she’s proud of who she is and those strong legs. In her response she pointed out that she was diagnosed with MS about 10 years ago, and of course told the viewer if you do not like them you can turn the channel.

This got me thinking about not just those out there that suffer with MS wishing they still had strong legs that would allow them to walk, but much more. I for one am thrilled that my relapsing MS is under control and my legs still allow me to move around. I personally know others who have lost their ability to walk and now either rarely go out, or use a wheel chair.

Now, I want to get more to the point of this posting and bring up one of the best lines from Janice Dean’s response. The line was, “you can always turn the channel”. What makes this so interesting to me? It points the most logical thing a person can do if they do not like something, and that is turn the channel. I mean she’s not breaking any laws here so if they do not like it the option is to turn the channel. The option isn’t to boycott the station, call for a national boycott or even threaten her more so she changes what she wears.

I know what I said in the last sentence seems like a leap, but that is the world we now find ourselves in. If someone does not agree with a perceived way of thinking groups will threaten, boycott, or worse cases cause harm. It doesn’t matter the political stance of a person, or group, it’s the fact they want that offending person to pay for not thinking like they do. It’s an epidemic and makes me think that there are simple options to the issue. If you don’t like it then “turn the channel”. I know not all cases are so cut and dry but really is it that necessary to create hate, and loathing.

I mean here we are as adults saying we need to stop bullying in the in children but what type of example are we adults setting. We sit behind keyboards, smart phones, social media and other devices to speak of hate. We want a business put out of business, thus destroying not just an owner that may be the issue but all that work for them. We will threaten people with death threats; put up internet pictures of death or violence. We will even cut off long term friendships for a disagreement because they do not think the right way.

So I realize I’ve come a long way from Multiple Sclerosis and have gotten a connection to bullying. It however is in away fitting that these things are connected. We live in a society that pledges that we accept the differences of others, that we should be free to think as we wish. However, we instead shout down those differing views if they do not fit a specific ideological opinion. We scream and yell at others before even taking a moment to try and understand them.

To be brutally honest, to me there is one simple cause for much of this. It’s that simple thing that helps us all connect at same time divides. It’s social media as we have forgotten how to truly talk to each other. A simple message about someone’s looks can create the need for Janice Dean to respond to shame. A simple message can bring hundreds, if not thousands, down on a person for daring to think differently. It is really easy to do so much of this HATE when you are not looking into someone’s eyes. You do not see how your actions can hurt and scar a person when you are not up close and personal.

I’m going to end this post here as I hope it gets people to think. I mean when was the last time you actually sat and talked with someone? Do you talk to friends, or family, more over a messaging device over face to face or a phone? Ask yourself what kind of examples are we adults setting for children when we take everything so personally? Just stop and think on those questions. I’m hoping this post does not create hate as it’s not the cause, but who can say. I’m asking people to stop and think and I’ll add now if I see hate coming in comments they will be deleted. I’m not one to continue the cycle but asking people to think. Even better for those things you find so upsetting instead of attacking and wishing death, try telling them you love them and hope they rethink their opinion. Let love show that it can conquer the hate by turning that hate to love over hate. If I’m lucky some will read this and realize what I am saying in this long winding post.

**Note the two links in the article will take you to an opinion piece by Janice Dean, the other an article from Forbes on the dangers of lack of human interactions.

 
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Posted by on January 15, 2018 in Multiple Sclerosis

 

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March Multiple Sclerosis Awareness Month

MS RibbonI know I promised more book reviews and those are coming. I just know that if you use Facebook and know anyone else with Multiple Sclerosis you may have seen posts stating that March is Multiple Sclerosis Awareness Month. I can honestly say I am not sure if that is a national event, or not, but I want to do my part and bring some awareness to MS.

I have not seen much in the way of awareness being brought to the disease other than those images. I realize at the time I am writing this the month has already started but I’m sure you know by now MS is something I deal with daily and want to get people to understand it more. I also want people to understand it’s not a death sentence, don’t hide, and most importantly NEVER give up.

MS is often called an auto immune disease and there is no known cause. There are theories out there that it could be genetics and environmental factors or even something from an infectious disease. I do know it’s more prevalent for those who live up North where they may not get enough sun. It’s why many doctors push Vitamin D when they are diagnosed.

I personally like to call MS the “Chocolate Store” disease as your average box of chocolates does not hold enough pieces to handle the differences possible with MS. I do believe I read an article sometime back that state there are at least 50 different problems that can lead to a MS diagnosis. So, this is why I believe the “Forrest Gump” analogy of, “Life is like a box of chocolates” doesn’t work here.

When it comes to my personal diagnosis story it started just over 10 years ago. I had just begun a new job and had instances were my arms just started to flex without me doing anything. Flexing is probably the wrong term but my arm muscles would tighten and this forced my arms to bend in toward my chest. I got to say scary and when it happened in the car as I drove to work it was time to get serious. I also had issues with severe cramping like feeling in my legs. I had thought maybe a potassium deficiency but I was wrong.

These problems required me to get all types of medical testing. The hooked up sensors to my scalp, and that glue not fun to get out of your hair. They pushed needles into my arm to test nerve reactions. The final major test that proved everything they thought might be going on was an MRI. I will say I’m not a fan of those and today need some meds to relax me or it is not happening. Either way the results came back there were these white blotches in the MRI results on the brain and even the spine. It was official I had Multiple Sclerosis.

I believe I have shared this in a past writing but I got to say I took the diagnosis in stride. I did not see it as a death sentence. I was told I had relapse remitting which is a type of MS that will come and go and for many of my years I believe I am in remission. The point is I knew I had to be positive that getting down on myself, even contemplating my funeral would not do any good. I had to think of how I want to spend my life, and I decided on staying positive. I am sure family members took the news worse than I did but I hope by staying positive and explaining to them what may or may not happen it helped them.

You see that is why we need an awareness period with MS. It’s sad but as a recent actress showed people hide the fact they have the disease. They are afraid of how people will react, how their employer may react and more importantly their family. I should avoid this analogy but it seems that people are much more willing today to come out as gay, or transgender, than to say they have MS. I realize that statement is a stretch but look around the world is accepting people’s different sexual orientations more and more. However, there is a stigma with disease like MS were people are afraid to admit they have it. I get many reasons on why that could be, but as in anything in life when you have a problem you must admit to it. As for MS I love to say, “I have MS, it does NOT HAVE ME”.

The positivity that you can find by connecting with people with MS through support groups, either online or through MS organizations are huge. They can help you find others in similar situations but not always the same. I did mention my chocolate store analogy for a reason. The key is do not be sorry, upset or give up on anyone who gets a MS diagnosis. The medicine and treatments have come a VERY long way since the disease was first found.

This is also a disease that will hit anyone from race, creed, religion, ethnicity, and celebrity status regardless of who you are. So the key to tell someone with MS is no matter what you think you are not alone and just be their friend. Reach out to those you may know who have the disease and instead of saying sorry ask them how they doing. Even better ask if there is something they want to talk about, do for the day and just be there for them. I for example do NOT want to be treated like I’m made out of eggshells.

You will find people that are ignorant, who say they care, and do not back those words up. I have seen this myself but well I like my job so will not go further. I will say my immediate supervisor, and coworkers, have been very understanding and backup what they say. Now, back to the point, those negative folks need to be cut out of your life as negativity breeds depression, and depression is a major side effect. (Mental note that sentence was really long) Ok so by now as you have been reading you have noticed I am mixing some humor within this post as that is who I am. I want people to see I am me and I have my up and down days just like anyone else with MS. I for one just want people to understand that and be there regardless of the type of day.

I hope this long post opens up some of your awareness to MS and I will close by saying much of this is based on my experience and observations of others with MS. I cannot speak for all as there is just too many versions of the disease and how it may impact someone. I will close by listing just a few of the celebrities that have MS and still are alive and kicking now and working in their trade. I’m doing this to help show regardless of who you are it’s your mindset and how you react that, to me, is the biggest help when dealing with MS.

Celebrities Past and Present

  • Jack Osbourne (Reality TV Star)
  • Annette Funicello (Actress)
  • Neil Cavuto (Fox News)
  • Montel Williams (TV Personality)
  • Jamie-Lynn Sigler (Actress)
  • Trevor Bayne (Nascar Driver)
  • Clay Walker (County Singer)
  • Teri Garr (Actress)
  • David Lander (Squiggy from Laverne & Shirley)
 
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Posted by on March 9, 2016 in Multiple Sclerosis, Personal

 

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Fall and the MSonster

 

Msonster

The change from spring to the fall is one of my favorite times of the year. The leaves turn from their summer green to hues of yellow, orange, and red before they fall to the ground. It’s beautiful to see those colors as they hang from the countless number of trees, at times it looks as beautiful as a sunset. The one drawback the leaves falling gracefully to the ground, and creating a carpet of color is raking them off the yard. This brings me to the main topic of this long promised post, The Fall and Multiple Sclerosis.

As mentioned this is my favorite time of years as I’ve always loved the cool down in temperatures and the brisk feeling of the air. The day’s sunshine becomes shorter as the progress towards winter continues, and for some the end of daylight savings happens as well. You may wonder why I said some, well not all have to suffer through the fun of the time change.

As all of this happens there are other changes that many are impacted by. In truth this is also the time of year the barometric pressure changes, less humidity in the air, and that chill gets much colder at night. These are all changes that many accumulate to easily, but for this person it’s not so easy. Yes the humidifier is broken out at home as no one likes waking to a bloody nose in the morning. (ICK) There is also the dry cracked skin on the hands and the way the heat dries out the eyes. It’s troublesome but there are remedies such as lotion and eye drops that can help for those issues.

It’s hear when I remind myself on how Multiple Sclerosis is different for each person diagnosed with the disease. If I’m asked about MS I like to remind people how in the movie Forest Gump the main character says, “Life is like a box of chocolates, you never know what you’ll get.” I may be paraphrasing a bit but that is so true when it comes to life, and for MS it’s like a candy store of chocolates. As fall hits for me it becomes a store the size of a huge mall. This means I do not know what the MS Monster will bring me from day to day.

It is one of the many reasons why I do my Halloween open blog as it gives me a break from having to write of new content. I get to relax a bit, and recharge the batteries. However, this year was one for the books as I lost nearly a full day thanks to the MS and how it handled the change in weather. I can still remember the day in question, as it was a Thursday. I was due to volunteer in at a local school in the Junior Achievement program. I got up and found myself having trouble walking. My legs hurt and my arms felt like Jell-O. There was more to my issues but thank goodness I can work from home or I’d have called in for that too. I realized at that moment I would not be standing in a class room, or heck walking into the school alone was a challenge.

You take those physical issues and add them to the one big issue this year and that is the Cognitive problems. My focus has been lacking, I’ve been unable to read much at all as I’ll start and forget what I had read. I was making notes at work for the things I had to accomplish for a day.  I found myself looking at the list many times. I could try typing a sentence and like a child with low attention span forget what I was doing. This was driving me insane and my blog suffered, hell I was suffering as I hated feeling like this.

As someone who prides himself on having a sharp mind I found myself comparing myself to those with early onset of dementia. I was getting frustrated with myself, I mean how do you do book reviews when you cannot read  paragraph before losing where you are. I was fortunate work did not suffer too much as many duties are almost like muscle memories.  The problems came when trying to engage in things like writing, or reading. I mean after I had that bad Thursday I was outside raking by the weekend so the muscle issues where short lived.

I eventually overcame the cognitive issues and was finally able to write this piece. In truth I went to something I knew would help me refocus and increase my cognitive skills. What you ask? I started playing some video games on my computer. I played several Call of Duty games and recently I have been playing Diablo III and this has been helping tremendously.  You are made to focus, and watch your surroundings in those games. If you fail to watch what is going on your character is killed and you have to go back and start an area again. It can get very repetitious as you do this. So,  you must focus watch what’s going on and learn what not to do to end up having the character die again. I felt my focus coming back and my cognitive skills returning.

This of course was all helped as the weather normalized, the last of the leaves floated to the ground and it got cold. It’s why this post was finally finished after working on it for almost two weeks. I could go into more of the issues brought on with the weather change but that is not the purpose of the post. I wanted to peel back a bit of the layer of my life to show I struggled but DID NOT let it stop me. I found a way to overcome the problems to get back to my sense of normality.

I think that’s the biggest thing I can tell people about getting a diagnosis of a disease. It’s not always a death sentence. You can feel like your world is ending, it will change and nothing will be the same again. I call BULL SHIT to that type of thinking. Life is what you make out of it and I think it’s important to work through the challenges life can bring. As for me, yes I have Multiple Sclerosis, but I WILL NOT LET IT HAVE ME! I will keep doing as much as I can and fight what it may bring at me. Yes I was down for a few weeks, to a month, but I am back and stronger for it. I found another way to refocus my energies and another way to fight the disease. I know what I went through may be nothing compared to others who have it much worse. The fact is just don’t give up to the crap that life brings.

I’m sure there are those who will read this and go, “What you complaining about, you didn’t have things that rough.” I realize that may be but to one who works to engage his mind I was scared.  So, I invite people to take what they want out of this as it may seem small to you but to me it was major. The fact is I again would not let the monster change my life. I will keep fighting against everything that the MSonter throws at me, just like I do against the negative life brings at me as well.

 

 
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Posted by on November 23, 2015 in Multiple Sclerosis

 

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M(s)onster Awakens -A True Story

MSonsterI wish I could say that the reason for the lack of content over the last few weeks was due to something new and exciting. Sadly I would be lying if I stated that as much of my lack of content has been more relating to health issues.

I’ve written about my Multiple Sclerosis before and after the survey results it was revealed people wanted to see more content around it. So this post is a glimpse of the struggles I’ve been dealing with over the past few weeks. They are health related and I have no fear exposing myself, not in that way people, to the world when it comes to the MS. Yes I am still me and got to throw out some odd humor to lighten a serious mood. It’s just who I am. I must now get back on track, so back to the meat of the post.

This past winter has been a cold one in Wisconsin. The snow wasn’t too terrible this year but when it came I felt I had to get out there and shovel. I saw it as needed exercise and a reason to get out and be active and not worry about gym dues. (Money is tight all over). I would get out there clear the sidewalk around our house and I got to say fun having a home on a corner. Oh and I won’t even get on a rant about the wonderful city plow drivers as that is a post in itself.

Along with the physical activity something else changed as I was given the opportunity to change from my daily shot to a three day a week regiment which meant fewer needles. I was doing well with much of that and then spring started to show up. The weather was not being nice and the hitchhiker decided it was time to try and take the wheel. The hiker is the MS which has been dormant for me since I originally was diagnosed those many years ago.

I’m used to the soreness in my arms, the fatigue and some leg issues but this time around I got a new experience. I had some cognitive issues and those scared me. There were things such as just forgetting a word when talking to someone, forgetting what I had just read and a few other issues. The other thing is I found myself having mood swings. The emotions where all over the map and I’d find myself having to fight back anger, and frustration, over the dumbest of things and I had decided enough was enough.  There was insomnia that medication was not able to help and that added to the already tired feeling I was having.

I had struggled with these things for a few months and even noted for a time I was not taking other medications I’m on. Oh trust me I’ll hear about that from my upcoming doctors’ appointments but it was my own fault. I saw/felt what was going on and I waited and waited saying it will pass. I was in no real mood to worry about myself, but at same time often will put others in front of my own needs. It’s just how I’m wired.

I finally got out of that funk and went to my neurologist. This is where the person I consider a lifeline, the one who can help me understand what is going on let me down. I was in and out of his office in 15 minutes and beyond ordering an MRI he put me on an anti-seizure medication to help with the arm complaints I have. The problem is the long list of negative side effects and as most where mood related I told him I did not want the medication. He got it anyway.

I have come to find out that many of his patients are feeling something has changed in the doctor as I’ve noticed for the past year. I’m not sure what is going on but I do know after this MRI I am going to be looking for a new Neurologist.  How you may ask well there are websites that will give you ratings on your doctors.

All this crap going on and of course the daily financial concerns and ensuring your family is cared for just pushed me down. I’m not working on climbing my way back out of the pit I was in. I have noticed that by refocusing my energies the cognitive issues are going away. I just had to find a method that worked for me that helped me refocus. The method you ask, well when I had moments I had to put the energy somewhere else. I cleaned, re-arranged things and did all I could to keep my mind on one simple task. It’s helped and I feel more and more normal every day.  Oh I’m sure I hear some of you going, Normal?? Yeah ok for me as normal as I feel I can be. Sure I still have the financial worries and other concerns but I’ll find a way to deal with those things, but now just in no shape for a part time job. Yet!

So with the reinvigorated process to stay focused I’ve begun reading again and find that I’ve begun getting through books. This is one of the reasons I closed submissions for a while as I needed to get caught up on what I have. I also realized that I need to ask for help sometimes. So if you have read this far and want to help get in touch. How I mean, what am I looking for, well get in touch tell me what you can do. I mean it’s not hard to write a guest blog post for me to post during down periods. Who knows may be you want to start posting your reviews on my blog. So again I am not letting this Monster get me as I find a way to adapt and move forward. Now if only we could do this as easily with bills, he he.

As for the subject of this post being somewhat of a horror tint to it, it was intentional. MS is not fun it can hit those who have the disease in so many different ways. If life is like a box of chocolates the MS is a store full of chocolates. You never know what you’ll get and you are not allowed to design your own box, it picks for you.

 
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Posted by on March 30, 2015 in Multiple Sclerosis

 

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In Darkness there is Light: Depression, MS, Suicide

DarknessI am ending the year of 2014 with what must be my most personal of posts I have ever written on the blog. This one will get into some deep corners of my mind as I feel in sharing some of that darkness I may be able to bring some light to those who finish this long post. I say that as I will endeavor to show a positive that comes from dealing with Multiple Sclerosis (MS) and depression. I will warn that this is a lot of free flowing thoughts and grammar may be bad. The intent is in the message not the grammar and I just had to get this written and shared before I lost my nerve.

The thing about MS is that it impacts every person diagnosed with the disease differently.  There is a stigma that comes from a diagnosis. People will often see a diagnosis as a death sentence. Suffers may look normal but still need a handicap permit to shop due to the high fatigue. People will question and judge a person they see using one as they go, “What’s wrong with them”.  It’s not fair but who says life is fair as if it was to be perfect there never would have been an apple tree in the Garden of Eden.

There are others who get the disease far worse than I. They may lose all mobility and end up on disability. They must give up some of the joys they had in life and face new challenges. Things like how to afford medication care and why are loved ones leaving me. I am fortunate as my MS I get fatigue, muscle spasms and yes the mood issues that can come with the disease.

This brings me to the first part of this post. I am writing this early in the morning when my mind will not shut off. I took my normal medication earlier in the evening and this is a side effect that has happened to me on rare occasions. The shot may have helped the muscle spasms I had been dealing with much of the past day but at same time it’s like I received a shot of adrenaline. I just cannot find any position to get comfortable in to sleep. My mind will not shut off and there are some lingering spasms that make it just as difficult to rest.

This is where the deep recesses of my mind are awoken. The trauma from a solitary existence in high school, my choice, led to darkness in college. This is where my first battle with depression came in. I became overwhelmed, and had to small of a support network to go to for help. I’m a larger person and never felt comfortable making friends as I heard some of the whispers in high school. I did get picked on but used my own humor to deflate some of those comments. I also was never one to be in the “popular” kids group as I saw more to life than partying, drinking and just screwing around. I was a social butterfly and that was my choice in life. It may be why I do not have many peer connections from that period in life left.

So thus came college, and what had worked for me in the past was not working so well. I fell into a DEEP depression and at one point even contemplated suicide. This will be a shock to any family members who read this as it’s not something I share. I am not going further into the why but I did get help and thus I am here today writing this post. I will add this is why I am a private person and often keep to myself and own devices. I don’t want people feeling sorry for me, but at the same time is it so hard for someone to ask how I am doing. This is not the time or place for that but it does bring feelings of guilt to the mind. What if I had made better attempts to communicate with people? I guess at this point I will take what I have in life and embrace what there is. Otherwise depression will try to come and claim me again.

The problem with MS is that for many of us depression is one of the side effects of the disease. It is in these dark periods of the night that thoughts come screaming to the front of the line. I have hundreds of questions racing in my mind. There are things I ask such as:

  • Why me? I tried to be a good person. I pray to God and my prayers are not answered in the way I prayed. I ask for a family member’s pain to stop, and they die. How is that helping? Why?
  • How is it there are people that are cruel to others doing so much better in life then me? Don’t I deserve some help? What have I done to be shunned? Is it fair?
  • Why can’t I get a Go Fund me page and get some help? I mean others get them why not me? Oh yeah people probably thing I’m not worth helping as I’m a fat loser.
  • Why must I go on living when all I want is peace and for the agony of life to stop?

 

The last of those questions is always the point I see a pinprick of light in that darkness. I see that light and I go racing towards it. I stop the angst and thoughts of shutting off from the world and scratch, crawl and fight my way toward that single point of light. The darkness will not take me. No I have not won the lottery. No I am not getting support from any government agency, or money falling from the sky. The problems of debt, self-doubt, self-loathing and pity have not gone from the mind. They instead are going back into that spot in my mind they need to be locked up within.

The muscle spasms of the night are still here. The unending feeling of energy keeping me from sleeping is still here. The one thing that is leaving is that darkness, that depression that fights to take control again. I am nowhere near a knife or anything that would allow me to do something stupid. I am too smart for that as I learned to overcome in college. I will not let those hard learned lessons from over twenty years ago be forgotten. I can scream in my mind about how God why have you shunned me. Why have you turned you back on one of your creations, but then I find peace. I realize there are so many of us on Earth that not all can be watched over at every moment in life.

If my faith is wrong and there is no higher power than it is up to us as humans to find our own way. It could be why each time I ask myself those questions, about God, that I realize that maybe exactly the plan for me. To find my own way in life like so many others have to do each day. It may not be what I want but it is the life I have and if I just stay positive good things will happen.

This is what happens as I reach that pinprick of light and start making it bigger. I take a sledgehammer and anything else I can find to make that light bigger. It’s like the morning sun crawling into the sky banishing the darkness to the corners of the word and brings warmth to all it touches. It’s how I see that light as positive energy that stops me from dwelling on the darkness. Instead I start to think what does this day have coming for me. How will I react to what comes my way and realize that each day I breathe is a new chance to start fresh and new again. It may not be the plan I have but I am here and it’s a new day.

If you made it this far you will see that although I am like so many others in life and those with MS, I have demons to battle. I am writing this to tell you…I will win! I will not let the depression and mood swings take me down as I am stronger than those. I have been on this Earth for over forty years now and want to go on being here longer. So bring on all that self-hatred and ridicule that may appear at night so that each morning it can be cleansed with the morning light. I may have tough choices ahead, my MS may get worse but I will not give into the darkness. I will find a way to scratch, crawl and fight my way to that pinprick of light. I will stay positive no matter what as everything has a reason we just have to find what that reason may be. As I say, “every cloud has a silver lining just sometimes you must rub through the tarnish to find it”.

 

I’m adding some late information as this was going to be posted during a lunch break today. This did not happen as unfortunately, after what I see as a big cluster F*$K this morning as work through a massive curve ball at me.  It added to the fun from the lack of sleep and muscle spasms but guess what happened. As I was ready to scream at the world and let someone have it later in the morning I looked outside. What did I see but a beautiful sky with the sun shining through the clouds. There it was again the light I will always search for to stay positive and out of the dark.

 
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Posted by on December 29, 2014 in Multiple Sclerosis, Personal

 

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Reading + Writing + Multiple Sclerosis = Frustration

WritingI don’t complain much on the blog when I write about my Multiple Sclerosis. I try to keep things positive and this is one of those times were I may lash out a bit. I’m going to be up front and honest about some emotion and although it’s not to terrible it’s more frustration than anything else. The frustration is due to a feeling of being neglectful of myself imposed duties to the blog I write.

By now you are either still wondering what am I writing about, or lost interest and waiting for the next post. Either way here we go folks so let me get to the true reason for the post and the subject.

I’m writing this blog post with my MS word zoomed in two hundred percent to give my eyes a break. My arms are a bit sore and my hands ache a tad as I type. Up to this point I have had to stop at least two times to close my eyes and reopen to focus and shake my hands and arms out. I’ve had to change my sitting position at least four times and hopefully by the end this will be the last time.

What is causing this discomfort and problems? It’s simple it’s the side effects of my Multiple Sclerosis. It can mess with SO much of the body and for me it’s been pretty light. However as temperatures cool and then rise, then repeat it hits my physically and sometimes emotionally. You add in the full moon that has come and gone and it’s worse than the world’s longest roller coaster.

My eyes have gotten blurry a few times, my arms ache and there is not much I can do with it. I try to save the energy for the fourty hour work week which makes blogging a bit difficult. This is where the frustration comes in as I try and get a new book out to all of you at least one time a month. It’s due to these factors I have been a bit off as of late in getting new product out to you.

Thus I finally had to blow my screen up and write this explanation and most importantly let people know I am not done, I have not gone away, but just a small break. I have some vacation from work and plan on using the time to relax and get back to form and back into my normal blog patterns.

In the between time let me share with you what I have waiting for my attention, and get the word started on these books.

First up I have Doug Lamoreux’s book, which he co-wrote with one Daniel Lamoreux (his brother), titled Apparition Lake. The book has been rewritten by the brothers and is going to be made available by Creativia Publishing. The book is a reimaging of what Doug called, “mistakes of youth”, and should be a great read. Doug’s other books can be found online and of course on Amazon.

I will follow that book up with one from Author Kate O’Connor titled, Mermaid. This book was released on March 21, 2013. The book is through Musa Publishing and a description of the book is posted below for anyone who may want to read it before I do.

WMERMAIDhen genetically engineered sea drone Coral saved two drowning humans, she didn’t expect to end up questioning the foundations of her world… but humans don’t seem as different as she’s always been told. With nothing ahead of her but mindless days of harvesting seaweed for World Food Co., she has to know why humans are free to choose and drones aren’t.

Coral’s only hope of transforming her future lies in taking on a battle her people gave up a century ago. However, each step nearer to drone freedom brings her closer to falling in love with Rob, the man she saved and heir to the company she is fighting to change.

Struggling to unravel politics and passion, Coral begins to realize that she stands to lose more than just a chance at being human. Both her life and Rob’s may just balance on whether or not they can create a world where drones can be free.

 

The last of the trifecta I have on my to-read list is the book, The Dragon and The Needle, by author Hugh Franks. This book came to me all the way from England, and borrowing the English vanacular, through the post. This is one of those times I received the paper edition of the book and thrilled that arrived. I have shared a book description below and this book is from the Book Guild Publishing.

DragonA mysterious syndrome is striking down political leaders across the Western world. Named Extraordinary Natural Death Syndrome, or ENDS, it has baffled medical experts. The Western prejudice against the mysteries of Oriental medicine, and the growing acceptance of acupuncture as an effective method of treatment, are just two of the contrasting approaches explored in the story.

A brilliant young British doctor, Mike, and a glamorous Chinese acupuncturist, Eleanor, become involved in finding the cause of ENDS. They think they are on the right track, but the implications are shocking. Could this be an audacious ideological plan for world domination? And how does Eleanor’s dead husband Chen fit in? When the secrets of The Dragon and the Needle are revealed, where will Eleanor’s loyalties ultimately lie?

 

You can see I have some books to read and do not plan on stopping for any long period of time. I just have to take this short break to let some pain go away and see 20/20 again. Good thing this eye issue doesn’t happen when driving and for those saying, Get your eyes checked, I did they are fine.

 
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Posted by on July 17, 2014 in Multiple Sclerosis, Personal

 

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