Inside My Own Little World

Divorces suck--even when it's the best thing in the world for you. You lose half your family. You lose half your friends. You lose someone that at one point in your life was your very best friend. You have people who think the very worst of you without having been in your shoes or even bothering to wonder what it was like in your shoes. You have to start over. You lose your IDENTITY.  Yeah, you get to a point where you are able to start over, but there is still all that history you have to leave behind. I miss hanging out with my old family. I miss the friends who chose "the other side".

I have decided to say "no" to:

 

- on-the-side web designing

- letting people pressure me into doing things that I know will be too hard on me

- doing things for other people that will over-extend myself

- doing things that will force me to get up too early both days of the weekend. My body NEEDS to have one of the weekend days to sleep in until I wake up on my own. It's the only time I get to recoup my body from the previous week and to get ready for the coming week.

 

Having MS means makes adjustments and changes to your life. If you are not able to do that, you will and do pay the consequences. And you are the only one that knows about those consequences, so it's important to be honest with yourself and take care of yourself. No one else knows what you are going through (unless you decide tell them).

Having MS sucks. It really does. One day you can feel perfectly fine and seem absolutely normal. And the very next day can be completely opposite. Sometimes there are reasons and sometimes there aren't.

 

MS can have certain "triggers" that cause flare-ups. If you are able to figure out what your triggers are, man are you lucky!  Then you know what types of things to try to avoid. But even if you are aware of those triggers, it sure doesn't mean you are in control of your MS. Sometimes a flare up will happen all on its own...no triggers at all.  Sometimes your triggers cannot be avoided or controlled. And sometimes avoiding your triggers just doesn't help--you get a flare up anyhow.  MS is very unpredictable.  You really don't know what will happen to you from one day to the next. And it's worse when people assume that when you do get a flare up, it was because you weren't taking care of yourself.  You may have been following every single precaution available, but get a flare up anyhow.  If the causes of MS were known, there would be a cure.

 

Having MS really f*cks with your mind too.  You can feel perfectly healthy for days, weeks, months or even years.  Then BAM!  A flare up occurs out of nowhere. All of a sudden reality comes crashing back--you have MS, you are not healthy, you are not normal, you are flawed.  You can do everything you are supposed to do and feel like you are in control but when an attack happens, you are once again brought back to what having MS means. And you go through all the mental shit that you went through when you were first diagnosed all over again. What did I do wrong? Why did this happen to me? What did I do to deserve this? And are reminded once again that your life is not in your hands...it's in the hands of an uncontrollable, incurable disease.  And you go through the depression again. It's a big circle of emotions with no ending.

 

MS is explained on the National MS Society's web site as: "Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another."  Essentially, MS attacks your nervous system--your nerves are being attacked.  Because your nerves are involved, MS can cause your body to feel things that you have never felt before.  Think about it. Your nerves are what are in control of certain physical sensations: pain, numbness, things that feel good.  When you get a massage from someone, you feel different things--some things feel good, some things tickle, sometimes it is uncomfortable, but bearable and some things just hurt.  But what if your nerves caused you to feel something brand new...something you have never felt before?  How do you describe that new sensation? The only way to do that is to compare it to something you have felt before.  People with MS feel new sensations...things they have never felt before. And then they are asked to explain that feeling...to doctors, family, friends, co-workers. Sometimes those new sensations are sort of similar to other sensations. Some times they aren't. But the best way to explain to someone is to describe a sensation that everyone has felt before. Numbness to a healthy person feels one way. Numbness to someone experiencing an MS flare-up is a completely different sensation--it just doesn't have its own name.  I can describe my MS "numbness" as sort of like when your foot falls asleep.  That is not totally accurate, but it's the closest sensation to this new unnamed feeling that the MS is causing.  Sometimes only another person with MS can understand the new feeling because they are the only other people that have experienced it.  People without MS can try to understand, but because it is a sensation they truly have never felt before, they can't possibly understand. And if you have MS and are not good with explaining things, you are in a world on your own. You do your best to describe what it is like, but aren't able to find the words, so other people can never fully grasp what you are going through because there are no words to accurately explain it. 

 

Other times, instead of feeling something new, your nerves just will go awry. Instead of something you never felt before, you will experience something you have felt before, but it will be extremely intensified.  So something that was slightly uncomfortable in the past may now be extremely painful. Or something that may have felt good in the past is now uncomfortable.  Your nerves when under attack can do anything they want to, whether you like it or not. 

 

MS affects more than just your nerves though. One of the most common symptom is fatigue. According to the National MS Society, "Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations."  What causes it?  Who knows.  There are many theories: http://ms.about.com/od/signssymptoms/f/fatigue_causes.htm, http://www.springerlink.com/content/lk207226u3126965/.  All that I know is that it is not just being tired.  See this site for some insight: http://www.nationalmssociety.org/about-multiple-sclerosis/symptoms/fatigue/index.aspx.  WebMD also has some good info: http://www.webmd.com/multiple-sclerosis/guide/ms-related-fatigue.

 

I combat MS fatigue every week, if not every day. It comes and goes as it wants to and when it hits, it hits you HARD.  For me, stress seems to trigger the fatigue.  WebMD lists the below info on dealing with it:

 

 

I have to learn how to do all of the above things better.  I'm not very good at any of them.  So I plan on working on the above items. 

 

All that being said, I will explain why learning to say no when you have MS is essential to trying to keep your body healthy and your mind sane.  In writing this, I know I will be hurting people. I know I will probably make people feel guilty and feel like they contributed to my MS.  THAT IS NOT MY INTENT!!  My intent is to inform and explain. My intent is for other people to understand that me saying NO is for no reason other than to prevent health problems. My intent is also for myself to remember that saying no is good for me and in the long run, good for others.

 

-taking a break. continuation coming-

Some times in life, things happen to you that at the time seem like the worst thing you will ever have to go through.  The people you thought were on your side won't be there or worse yet, in some cases, will turn against you.  You will feel like your life is falling apart and you have no control over what is happening.  You start to lose hope and wonder where your life is going.  And when it feels like it can't get any worse, something will happen to make it worse.

 

They say for every door that shuts, another one opens.  With every bad thing that happens, something good will happen.  It's almost impossible to believe that when you are going through an extremely difficult time.  But hang in there!  It CAN and DOES happen.  You may not realize it right away, but as a little time goes by and you look back, you'll see it.

 

At a time where it felt like most people were pushing me down or watching me drown without helping, someone came into my life that at the time I didn't realize the importance of.  I was ready and intent on blowing this person off.  But he never gave me the chance to do that and never gave up on me.  His persistance took me by surprise and I thought, "this is kind of intriguing...I have no idea where this is going, but my curiousity is peaked."  And blowing him off would have been the biggest mistake of my life.  I met the person who understands me--ALL of me.  I met someone who truly cares and has proven it over and over and over.  I met someone who is there to support me and everything I do.  I met someone that knows me inside and out.  I met someone that knows exactly what I'm thinking and feeling, sometimes before I even realize it myself.  I met someone who I cannot live without.  I met someone who is ME.

 

Thank you, thank you, thank you Michael!  You saved me.