“We don’t create a fantasy world to escape reality. We create it to be able to stay.” ~ Lynda Barry
I’ve been thinking.
I hate MS!
I know what you are saying. That’s pretty obvious. Who in their right-mind likes MS?
But you don’t understand. I mean I really hate MS. I hate writing about MS. I hate talking about MS. I hate every part of having MS. The hate is so strong it consumes me.
I use to just want to run away from everything and everyone. But now I know I just want to run away from my illness. Just breakout and leave MS behind.
But I can’t.
My friends always say they need a vacation to get away from their jobs, their kids, their spouses. I tell them to do it, just run away for a little while. Everyone needs a holiday from their problems and troubles.
Too bad I can’t take my own advice. It’s impossible for me to escape my problem. It goes with me everywhere I go. It’s a MonSter that lives inside of me. He makes my body tingle. I can feel him in my feet. Like a tyrant, he controls my hands and makes me drop things. He constantly laughs at me and my confusion makes him bold.
Some days are so bad; I begin to feel like a trapped animal. On those occasions, when I just want to crawl out of my MS cage and be free, I close my eyes and fall into my dreams. My dreams tend to rescue me from the beast. They keep me alive. I just bow my head, clear my mind, and run away.
I’m in the process of a move, and due to stress the beast has raised his ugly head. Michelle, even though I’m still walking with a terrible gimp, I dream that I’m running in almost all of my dreams. I enjoyed running before MS, and still enjoy it in dreams. I hate MS, I hate that you hate it, I hate that we all have this terrible monster in our bodies. Hate, HATE, @&$;, :(, hate, hate, hate, so on and so on!!!
Nicole I to wish MS would take a vacation. I hate what has happen to your life. I hear and read how MS has made your thoughts and words help others, but a vacation for you would be helpful. MS makes your life difficult for all those who care about you hard not seeing you living the life you want.
Mama, Yes a vacation from MS would be nice. Until then, maybe I’ll join you on the cruise! Will you be my roommate?
I HATE MS. I get it; I really do. I hate the fatigue which not only robs me of my energy, but it hijacks me of my life. However, this is why I hate MS the most. Just when I think I am doing better, when I have been able to walk each day, 4 to 6 miles, 15 minutes a mile – and I had been doing this for a year – MS steps in and like a Goebbels with some ungodly experiment, and bam! – I can no longer walk. And I don’t mean just can’t walk, I mean I NO LONGER WALK WITHOUT ASSISTANCE.
I used to run into burning buildings for a living; played rugby for sport; hunt, fish, head out to ball games, movies, etc. I laughed with friends, supported loved ones.
I can no longer do these things. MS is the Nazi robbing me of any kind of normalcy I once knew. It’s a sick regime offering its own Auschwitz in which I try to grind for some meaningful existence. I deplore MS to distraction, for I no longer know who I am.
Mick most days neither do I
I so agree with you. I’d love to take just one day off from the MonSter to stand up from this chair and just go for a walk. To smile at my neighbors and say life is good. But I guess I can just hope and dream.
I could have written that blog, Nicole. The only difference is that I am having less and less dreams. It’s so hard to laugh, concentrate or get motivated to do anything. There is no place to run, except to each other.
Nicole,
It is certainly quite lovely when we forget that we have MS but then a stranger will remind you with their comments or by staring. It definitely makes you see things from a different perspective as you are always wondering how to maneuver in a situation whether it be physical or answering questions. This is why reading, playing the piano, swimming , praying , meditation, and sleep provides solace. Thank you for thoughts and I agree with Sandra that the ads for MS are not accurate!!
I am so sorry you are feeling this way. I often feel like life is passing me by and so much of it is based around ms. You will have a brighter day soon. Remember that. You provide so much to so many of us.
Nicole, I know how you feel…all of us with MS that have become bogged down…actually engulfed by progressive MS know the overwhelming feeling of sinking or drowning in this disease. I used to think it was a doable disease when I was in RRMS. After an episode, I could go back to being more normal and get on with life. Now, I have become so dependent on my husband and I just hate it as I always took pride in being a doer, a get it done kind of girl. I thank god for my husbands sense of humor to add levity to the most trying times. I too dream of not having MS and it does give moments of relief, but during the daytime I feel much more pragmatic. I try to quit thinking of what I can’t do and focus on what I can do. I have learned to accept less than a perfectly clean house and my husband now cooks all the meals…but I can still dust the wood floors with my scooter pushing the dust mop in front of me. I still make pies but have to roll out the dough sitting at the kitchen table and my husband gets the ingredients for me. He says he now speaks French because when I say WE make something…it means HE makes it under my direction…(we equals oui). I have aways said it nos not what you can’t do because of..it is what you can accomplish in spite of. Nicole, you are an example of this with this blog site!
I could have written that myself! I never tought I’d miss the days of relapsing and rermitting!!
Thank goodness for dreams. In mine, I never have MS, and that just feels wonderful!
Hi Nicole, speaking of dreams, I met you in mine last night. You had flown to my home in Michigan. We just had a major storm here and I was so grateful to you for leaving your warm climate to meet me in my polar region. Just as we started our conversation, sadly I woke up. For the last few weeks, I just want runaway myself. So, what would you personally suggest to us fellow MSer’s when feeling this way??? Would love to hear some words of wisdom. Thank you for sharing.
Nicole,
I understand your sentiments. Everyday, all day I’m reminded of my MS. While I was reading you expressions, just before I was at the end of it, I was thinking like you; mental escape. One day my support group had three Reiki Master Practioners come in and do a session with us. It was a wonderful and peaceful 15MINUTES. I would do it again.
I too hate my almost invisible MS. The thief is winning now. Taking the joy away from being with friends. Taking my stamina to keep up with simple chores. Sometimes I picture myself brutally beating my MS out to the curb. Your right the only way not to become your MS is to live like you don’t have MS. This is my personal approach I’m sharing.
Great thought Michele, I wish my MS would take a long extended vacation only to get lost on a deserted island never to return. I wish that for all of us!!!!
Nicole,
I’ve heard it said that being a drug addict is the hardest “job” in the world- always trying to satisfy the beast 24/7-never getting a break or a moment where getting and using drugs doesn’t consume your life. We are living with progressive MS. I believe it is truly the hardest job in the world-no vacations, no relief and not even the temporary respite of the quick high of a drug addict. The glossy ads for the DMD’s in those MS magazines lie. I am glad you have found a source of comfort and relief in your dreams: keep running and please keep writing. Your voice, the voice of progressive MS, is one that needs to be heard.
Nicole,
Some would comment that’s meditation, most beneficial!
Great to have the choice to create mentally!
Nicole,
Vacations have no meaning for those of us suffering from MS daily. My best vacation is sleep-when I can get it. I worked my whole life to achieve career success. Just when I cleared all the hurdles, I enjoyed about two years of high achievement.
I am lucky to get to work four hours these days.
Life and the goals associated with success have definitely changed.
Living alone makes it even more difficult but at least I can reach out to wonderful people like you. Hang in there. Sleep well. Dream big.