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April 2, 2011 / multiplesclerosis1209

Walk MS

I did the Walk MS again.  And again, hated it.  I just don’t get it.  Why do they make us who are physically incapable of walking a great distance walk three to five miles?

Hubby’s co-worker’s wife formed a team and we joined up.  It was disorganized and weird but we found them this morning and started the walk together.  It took approximately four minutes of walking for us to get separated from the team and no one looked back.  This was after comments all morning about, “Geez, it’s only three miles”.  Luckily the three miles was split up so Hubby and I were able to only do about one mile and then head back to the start area and wait.  When the team got back, they asked how we got ahead of them and when we said we only did  one mile, they all laughed and called us cheaters.  I didn’t say a word and just ate my free hot dog and chips and waited for them to leave.

I know MS is an “invisible” disease.  I know most people don’t understand MS.  I don’t talk about it unless people ask and even when they ask, I don’t know how to explain it all.  I read an article by a woman with Lupus about her “Spoon Theory“.  This is the best explanation I have seen in writing about how it is to live with illness.  I sincerely wish I had more spoons everyday.  I sincerely wish that I had a reserve of spoons that I could dip into when I’m at the end of my day and wanted to do just one more thing (like have sex with my husband).  I sincerely wish that I could spring up right now and help Hubby do the dishes that have been piling up and never seem to be totally taken care of.  The truth is, I fucking can’t.  I can’t.  I have a certain amount of energy that I get each morning.  Some mornings I get slightly more than others but it’s usually about the same each day.  Work takes up most of my energy everyday but some days I can chug a cup of coffee just before I go home so I can maybe make dinner AND do some dishes.

I find myself getting irritated when Hubby doesn’t know exactly what I need.  I get irritated at my body for failing me and it turns into frustration with my Hubby.  We are newlyweds dealing with learning how to be married on top of learning how to live with MS.  It sucks.  It sucks big time.  I wouldn’t wish this on anyone.  I try to communicate what I need but I hate being so fucking needy and I hate feeling like I’m nagging.  We have enough normal stuff to try and remember about each other like how do you take your eggs?  coffee?  let alone Hubby trying to remember all of my limitations.  I feel like a nag or a party pooper with all of my special requests and needs like can we please not listen to music while we drive?  can you please not get up and move around while we are talk so I can concentrate?  I do my damn-dest to remember all of his needs but I feel like I have so many of my own to think about that there’s not enough room in my brain for it all and then I feel like a bad wife.

Unless someone finds a cure for this horrible disease, I am not going to get any better than I am today.  I cannot go back to my old way of life.  I can stay healthy and exercise and hope to stay where I am right now for as long as as possible, but I’ll never be a professional dog walker again.  On a good day I may be able to walk one of our dogs around the block a couple times, but I’ll never take a truck load of dogs to the dog park ever again.  Sure I could manage to get them there safely and chances are it would all go smoothly but what if two dogs get into a fight?  I can’t run to their rescue and break it up.  What if I wake up and my brain is extra foggy?  I can’t drive that way.  I have to be realistic.  There are things that I simply cannot do.  Even if I change my attitude, I still have a demyelinating autoimmune disease that is putting holes in my brain and spinal nerves.  I have real limitations and all the rainbows and butterflies and cheery-ness can’t change that.

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10 Comments

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  1. Sally / Apr 3 2011 9:38 am

    ok, i just typed up a huge reply, but not seeing it. If it don’t show up i’ll repost it later.

  2. Sally / Apr 3 2011 11:32 am

    This is gonna be long. (and apparently in three parts? It won’t post)

    “Why do they make us who are physically incapable of walking a great distance walk three to five miles?”

    Why? Its not meant so much for US to walk, as it is for US to show others we WANT to walk, and for the other people to see we do, and to help us with finding a cure. If we all roll over and play dead, there would be no awareness, and that is what these walks do, they bring out the awareness. I’m proud of you for making it as far as you did! I might have made it a block, forget a mile.

    For the people who called you cheaters, I have one thing to say. Walk a mile in our shoes, then call us cheaters. They don’t understand, some might eventually but most will never understand because they have never been in those shoes we wear. It takes a huge chunk of empathy to even begin to understand. To call us cheaters is beyond disgust to me however. And that is exactly what I would of told them at the time.

    I don’t know if you have read any of my blog, but some of this is in there, some isn’t. Take what I say with a grain of salt, advice if you will, with it being your choice to accept or not. Here’s a rundown on where I am today. Emotionally.

    Back when I was 13, I had a friend ask me to make a pledge on this “MS Walk” he was doing, and I asked what was MS. Long story short, I did not pledge, I WALKED. It was an 18 mile walk 😀 and I crawled across the finish line, but I did finish. I did not understand MS, did not know anyone who had it, but in the info I got my hands on, I knew it was something that needed a cure. So I joined. Had to get my dad to sign the release, my mother refused. I never in my wildest dreams would of thought 32 years later I would get that diagnosis myself.

    to be continued….

  3. Sally / Apr 3 2011 11:33 am

    part 2 (it was too long lol)

    I remember that day very clearly. The day before, the phone rang and I actually picked it up, and said Hello Dr ******** without knowing it was in fact, my doctor. I had no caller ID, just my gut telling me it was. It was, (not even the nurse but in fact was the doctor himself) and he asked if my husband and I could come to his office the following moring, he got the last test results back and we needed to discuss them.

    That day in the office, when I got the MS diagnosis, I immediately felt relief as to having an answer, then I looked at my husband, and the look on his face was the same look a deer gives when he’s staring at the headlights that are about to kill him. I knew at that moment my marriage was over, it was just a matter of when. My marriage had already been in trouble, but at that moment, I knew it was over. It was more than four years later that I finally walked away.

    The true effects of that diagnosis did not hit me until the day I got the call from social security telling me I was in fact, disabled in the eyes of the government. Until then I had this notion in my head that if I denied my limitations enough they would go away. Ha. I went to hell in a handbasket, the black swirling waters of depression sucked me in like never before and in the years since, I swam in it, with a few times of trying desperately to swim to the surface. I did try anti-depressants, but was having problems with each one to the point I quit trying. to this day I still fight that depression. But it IS getting better.

    When did it start getting better? When I stopped letting the fear of the future overtake all my other emotions and I made the decision to leave my soon to be ex. That was 17 months ago. We were in deep deep financial trouble, and the night I knew we were losing the house, I said, this is where we go our seperate ways, and he agreed. The divorce is not due to my MS, and I can’t even say his cyber affairs were due to the MS since he was having them before I got sick too. Did MS play a part? sure, on my end. It left me with the fear of being alone, the fear of what the future holds and that fear said anyone is better than being alone. How wrong I was.

    to be continued…..

  4. Sally / Apr 3 2011 11:38 am

    this site does NOT like my books…argh…

  5. Sally / Apr 3 2011 11:49 am

    http://sally-thejourney.blogspot.com/2011/04/for-ms-warriorthis-would-not-post-to.html

    I giive up, I put the entire response as a new post on my blog. 😦 there’s the link 😀

  6. multiplesclerosis1209 / Apr 3 2011 2:32 pm

    Well, your blog would not let me post a comment so here it is:
    Thank you for this. What’s funny is that I did the MS Walk when I was a kid too. It was like 20 miles long and I remember it very vividly. My dad and I walked together but I don’t remember exactly why….
    I am pretty realistic when it comes to the whole “can’t” thing. There are going to always be things that I am physically incapable of doing. I’m not being too negative when I say “can’t”, it’s just reality. I can’t do things the old way but I am learning to do things in new ways. I still enjoy the dog park but now I just take three dogs of my own instead of getting paid to be there. I still do dishes, I just do short spurts in stead a marathon cleaning sessions.
    I am going to look at that marriagebuilders.com site and see what they have to offer. I try to learn from other people’s mistakes (no offense) and listen when people tell me how to not end up like they did. My marriage is the most important thing to me and I want us to be able to get through anything.
    Thank you for reading my blog 🙂 I will check in here (yours) more often too.

  7. Sally / Apr 3 2011 2:48 pm

    That MS walk I did as a kid ruined my little toe nails 😀 they are still screwed up LOL.

    I read what I wrote several times after posting, and hoped you wouldn’t take offense, did not think you would, considering its one to another with the same disease.

    The marriagebuilders site has some very good info in there. I firmly believe in the vows I took, it was my husbands who did not. My first was physical affairs, the second cyber affairs. Way I view marriage, it was hard for me to walk out. And both times was well past time I should have. If it weren’t for my own health, I would never have walked out. But my mental health was at stake by the time I did.

    Just really want you to know it DOES get better! Just gotta look at life a whole lot differently 😀

  8. multiplesclerosis1209 / Apr 3 2011 9:19 pm

    I did not take offense at all. I appreciate people that are straight forward. Hubby & I have the same beliefs about marriage. We are two of the most honest people you will ever meet & would die before we would cheat. Our motto is “(insert last name) don’t divorce”

    I’m still new in everything (marriage and the disease) and try to keep a positive attitude. I’m pretty sarcastic which, in writing, can seem negative. I have to cry it out about once a month and purge the darkness within. And writing here helps.

    Thanks for reading & talking 🙂

  9. Lynda / May 18 2011 8:46 am

    The MS walk we participate in has a 1 mile walk and a 3 mile walk. I know that even a mile can be too much.

  10. Lexine / Aug 16 2012 1:07 pm

    Just found your blog, and wow! It is hard coming to grips with one’s own deteriorating mobility. All the cheery and pep self talk just doesn;t do much at times after you’ve almost exhausted your “pull yourself up by your boot straps and be optimistic” coping mechanism. So….again tomorrow, I will take my homeopathic remedy and think positive thoughts. That’s the plan anyway.

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