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Tag Archives: Multiple Sclerosis

Life was Stormy but Brighter Things Are Coming.

I’m sure by now there are those who follow my blog wondering what the heck happened. Where am I? Did I stop writing? Did I maybe die? Did my Multiple Sclerosis decide it wanted to take some joy from my life? No to all of those as I can honestly say that none of those are true and really they are the furthest from the truth. I do need to edit this piece a bit as MS did decide to flare up and I’ll get to that in a bit.

I could go on a long babbling story about what really happened but I want to make this post somewhat short as really it is a re-introduction to what this blog is for. So let me hit the points now to explain how the end of 2016 was stressful and how 2017 is finally calming down.

The month of August saw me traveling to the Mayo Clinic in Rochester, Minnesota, not for myself but my mother. She had been dealing with some health problems for a while and just before she planned to take a trip away from her home her hairstylist, of all people, pointed out how she looked jaundice. This led her to get to a doctor and after much testing they told her she had developed cancer. This is what brought the trip to the Mayo Clinic for the first time in 2016 and it would not be the last time. After surgery to remove a spot from her lung, we went back so the doctors could remove the original tumor that was found. She actually had two surgeries on that last visit over a span of a week and being the family we are she was one of the unique ones to be fighting two cancers at one time. I have to say the good news the doctor shared after the primary surgery made being in a hotel over Christmas worth it for us.

As my mom was going thru this my younger brother was dealing with his own life/death situation. He is one of those who likes working outside, and he and his wife own several animals. They have horses, chickens, dogs, and I could go on but really you probably don’t want to read about their small “zoo”. Anyway somewhere between the work around his home and the work in community a horrible infection took hold and he’s been battling that for some time now. As it is his story I will not go on to much more on that except to say that he is doing better and using a strong faith to help him deal with things. This faith along with support from family and friends is helping so much.

As for me, I started reading again and was lining up some reviews. I even have a few I am about done writing and wanted to share but then mid/late February things got weird. My left eye sight started to get blurry in the vision. It reminded me of what my grandmother went thru when she started losing her sight. A look out the center of the eye resulted in blurry vision but my peripheral vision for the most part was fine. I figured with some fatigue and other issues I had going on this was an MS flair up.

I had a normal six month checkup with my neurologist and mentioned the issue to her when I had that visit. A MRI was ordered and after having that done on a Friday, after a day or two of phone tag I got the results. The person who read the MRI said that it was NOT MS related but did state they had found three new lesions in the brain. Okay not the news I wanted when it came to the lesions but that is the disease but I still thought this eye issue was MS related.

This lead to an eye doctor visit a week after the MRI and that is where things got moving, and moving fast. First I got to say I have an outstanding eye doctor as she went well above the normal to help me on that visit. At first there was talk of a fix being glasses but then the retinal exam took place. She was going on about how healthy the right eye looked and the left eye she stopped. She asked if a few other doctors where available and next I knew she was consulting with retina specialists and then on the phone with the on-call neurologist for where I go. It came back that, yep it was MS related and I had a few choices. I could wait till Monday or get into the Emergency Room and get started on steroids that night. As we dealing with my eyes I went in that evening and started a steroid therapy treatment plan. I got to say that after just a few days my eye is feeling a bit better.

I realize these are a lot of excuses and I do HATE making excuses. There were some positives over the end of last year and the start of this year as well. Mid-year in 2016 I got promoted to a Front Line Leader (Supervisor) in the department I work within at my employer. I know have a small team of people reporting to me. The interesting thing my team is spread around the company but I am enjoying the challenges and most of all my team. My wife and I were given a small inheritance from when my mother sold my father’s business. This has allowed us to take on some home projects that we had been putting off. So, it hasn’t been all bad. Of course there is the joy in seeing my wife get ready to go visit her father who lives out of state who she hasn’t seen in a few years.

I just wanted to make sure that those reading knew that although it has been a rough six or eight months it wasn’t all bad. Things are picking back up for the positive and as always I am one that is trying to get back to the things I love doing. This means I do plan on getting those reviews I started out there, and more importantly getting all those authors waiting on a review realizing I did not forget their works. So, get ready as I may have to blow up the zoom in my Microsoft Word right now to write, I will be writing.  This is why the photo I used is one that was taken of a rainbow after a rain as to me it shows that thru all the stormy weather that life can bring something beautiful is waiting just behind it.

 
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Posted by on March 12, 2017 in Personal

 

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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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Where have I been?!?

Lost & FoundI was going to originally title this piece, “Where’s Waldo”, but was afraid of a trademark infringements. There was also the thought that someone would think my name was Waldo, or people would be looking for a photo crowded with people and hopes of finding a guy with a red hat and glasses. I however must stop with my pitiful attempt at humor (if you laughed YIPPEE) as I’m sure many are about to stop reading about now. So let me get down to what has been going on since the end of last year.

I’m going to be sharing some medical information and do my best not to turn this into a pity party type of post. It’s just to show that life has its own plans for us as what we may want to do can be very rudely interrupted by what life brings at us. It’s a fact that many of us know but at same time something many cannot overcome. They instead find ways to let the bad make things worse over finding a way to dig their way out. It’s why I write posts like this to share that with strength the bad things of life can be overcome if you try.

I had to stop and thing where to begin with this post. I will start that after a pretty normal Christmas season, wow it has been a time, I saw my primary physician not long after the New Year and that is when things started. The doctor felt it was time to maybe change up my diabetic medication. I had no problem with this request as I had good things about the drug. I could handle the need to urinate more frequently as I knew there would be a vicious cycle. It was a case where you would have to drink water to avoid being dehydrated but at same time all that liquid you have to go. I will say I wore out a bit of show tread there for a while.

It was about two to three weeks into taking the new medication; it was Invokana, when I started having some problems. My vision went blurry at times and I had some trouble walking. All listed side effects of the drug with the vision being one of the worse ones. I called my doctor and was instructed to stop taking, which I happily did. I was getting tired of feeling so bloated and then dry from that cycle.

I know those who are familiar with Multiple Sclerosis will say are you sure that wasn’t the issue going on? I did call my neurologist and they stated from the issues I was having it was more than likely the medication, and since they went to school for neurology I listened to them and put it down to the Invokana. So, yep there I was a bit of vision problems and unstable walking. I got to say trying to read after a long day at staring at a computer with occasional blurry eyes made reading difficult.

It was about this time I had brought up some pain I have been dealing with in my hip for at least five years. It was never too bad but it was starting to get worse and figured about time to have it checked out. So, here we go we have X-rays done and told to see a specialist. It’s off I go to another doctor and shockingly nothing is wrong with my hip or the joints. I’m a big man and to me that was a WOW moment but yeah this didn’t help the pain. This new doctor decided nothing he could really do so he sent me to a pain specialist. Ok, wait for it as there is a joke coming and it’s a bad one so move along to next paragraph if you choose. So, yep off to a pain specialist I went and this whole thing was giving me a whole new pain in my head. I did say bad joke.

I went to the pain specialist and he ordered the one thing I fear and that was an MRI on my back and hip. You’d think that having Multiple Sclerosis I’d be used to MRIs but I’m the opposite. I’ve had so many of them that I don’t want them anymore, but this needed to be done. I was lucky that they could put me in feet first and with help of a nice pill I was very comfortable. The outcome of this MRI, you guessed it, NOTHING was found. UGH! To finish this long story the pain doctor called for an outpatient procedure and had me get a steroid shot in my sciatica. I got to say it was kind of fun as I was wheeled in face down and a female nurse grabbed my scrub bottoms and yanked them down to expose some cheek. I think it was the first time I got to partially moon a room with four women in it.

I have to say there is more going on and as I see how long this is getting I’ll stop with the jokes and wrap up things pretty fast. It was early February when much of this was coming to a close and the issues from the Invokana had not gone away. It couldn’t be just the drug then so after seeing my neurologist on a six month check you’ll never guess what’s happening in a few weeks from this post writing. I’m sure some have an idea, well if you guessed another MRI you’d be correct. Oh and during all this a few dentist visits as I am approaching the end of a long process and the day that ends is the day I get my MRI.

So, if you have been reading along you can see I’ve had a lot of things going on. I have authors waiting for book reviews and I feel absolutely horrible that I have been delayed due to all the personal items going on. I have readers of this blog I also feel like I have let down but sometimes in life you need to look to what is important. This health crap that has been going on at least has met its three if you are one who believes in trinities. The diabetic medication, the hip and now a potential MS flare up. My hopes are it’s done for the year and I can get back to normal. I will say I have begun reading again and should have some reviews out soon.

I want to thank the authors who have been so kind and understand all that has been going on and are not upset. They get that life happens and are not holding any of this against me. I also want to thank any readers who have checked back for more content as well. I of course must thank my small inner circle for putting up with all the doctor visits and fun that has come with the stress levels and small mood swings. I’ll close out by saying new content is on the way just be patient as all this fun is coming to its end and I cannot wait to get back to normal.

I at least did not go into the cold and snowy weather that has been felt here in Wisconsin and the shoveling that has come with it. It’s just another fun factor from the last months. I’m sure I’m not alone by saying bring on Spring.

 
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Posted by on February 15, 2016 in 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, Uncategorized

 

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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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Feedback and Poll Results

Thank_YouI first want to thank the just over 30 people who stopped and took time to provide their thoughts on the blog. Although there was only one comment provide to me through email it was a very great idea. I’m going to provide you with the top two vote getters in each poll question and I will say one was a bit shocking.

First I want to touch on the email I received. It was a heartfelt thank you about my posts on my life on Multiple Sclerosis and how I stay positive. I did ask the writer if I could share in this post but they asked that I do not. I will just say that there was a great suggestion that I breakout my posts on MS. The thought is in their own category people do not have to look through my personal area to find. I found this great idea and will be doing just that by the end of this week.

So now onto the poll results:

Question: Thoughts on author interviews

Top votes went to Like and can I change the questions.

Thus I will put my thinking cap on and see about changing some of the questions. I will look at past responses and see what questions seem to be glanced over or not answered and think of something new. If you have a suggestion you can send me the question.

 

Question: What are thoughts on Reviews?

Top two vote getters were Like and Make me want to read book.

I have to say that was the results I had been hoping to see as it means I’m hitting my mark with the reviews.

 

Question: What do you like most?

Ok this is the one that shocked me when it came to results. I got to say that when I saw most enjoyed my personal content and short stories I almost felt an eye ball pop out of my skull I surprise. The reviews came in third place and considering bulk of traffic is from the reviews I was shocked.

Thus I am going to see about changing things up a bit more. I may post a few reviews and then enter personal contact and reviews again. I will be doing a “small” amount of experimenting on that so bear with me.

I am also going to be looking at a new layout of the blog so take this as a warning.

I again want to thank all those who cast votes as it’s a great help to this blogger. It’s good to know how things are being received by those who do the reading. Again, thank you so much and shortly I will be returning to normal blog publishing.

 
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Posted by on March 17, 2015 in Personal

 

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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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