Sunday, December 5, 2010

Coping: My MS Survival Guide

What at first I thought was denial was really more about discovering that I have terrible coping skills.  Denial is easy to identify.  It is the simple refusal to admit that something exists.  I don’t deny that I have MS, I know that I have MS.  It is irrefutable. While I’m not ‘out’ at the office, I have no problems telling the guy at the Apple store that I am living with MS!  It seems more that I cannot cope. I know in my heart it’s because I want my old body back, the one that made me feel normal.  My old body that had legs that could handle the heat of sunny California and help me walk a straight line, my old body with the left eye that saw things normally, my old body with hands that did not tingle, numb, and spark and allowed me to hold my camera without pain, my old body for which the only burn I felt was a sunburn. I always put it out to the universe:  may I please have my old body back??? The one without these pesky lesions that cause me so much grief?  Where’s my genie in a bottle?   

Unfortunately, my lack of coping skills has turned me into a crazy person, a monster of sorts.  I have developed a really bad attitude and have begun lashing out at the ones I love. This is where it must stop. That said, I have started a list of ways, a sort of survival guide to living with MS, to help tame this monster during the transition away from my old body.  As I enhance and develop my coping skills, I will add to this list. I get the sense this process is not yet over! 

My MS Survival Guide
How to Improve Coping Skills and Tame that Monster!

  1. Breathe. Take deep breaths.  Seriously, every day and multiple times a day. And, take real deep breaths, using the diaphragm, the kind of breath that you feel in your back. I always forget to do this and get caught up in anxiety thus breathing much too quickly, taking in the wrong kinds of energy.  This results in me running around like a crazy person, a neurotic hyperactive who can’t calm down and begins to panic about just about everything and freaks out about the potential doom that lurks ahead. Good grief. This is why ‘Breathe’ is number one on my list.  
  2. Meditate.  My good friend Mel reminded me recently to mediate in an effort to reduce the stress in my life. I am crazy busy at work so I accept this challenge. After all, meditation is free and there are no side effects.
  3. Grieve. My support partners helped me realize recently that I need to grieve, to say goodbye to my former body and transition into the new one I now have.  This never occurred to me.  Grieve for myself?  Just how does that work?  It seems weird. I haven’t died. Yet, at the same time, this makes sense. I think that’s why my inner monster has revealed itself these last few weeks – I must be in the anger stage. 
  4. Improvise. Living with MS does not mean giving up the things we love.  It’s a matter of figuring out different ways to enjoy things those things we love. Some examples:
    1. Hiking is something I love.  Yet, as my symptoms developed, I got discouraged and stopped hiking in fear of falling down.  I hope to change that with the walking sticks I purchased from REI so I can stay steady on the hiking trails. I’ve gone out twice with no falls! Although I find it a little stressful making sure my legs don’t get tangled up in the poles…
    2. Also, I love reading but have a lot of trouble holding the pages of books.  The majority of my pain is in my hands so the book always falls.  My sweetie bought me a Kindle – what a gift!  It’s a lifesaver and now I’m reading more than ever. 
  5. Journal.  Buy a Moleskine journal and write everything down. Symptoms, experiences, notes from doctor’s visits, etc. I have been doing this regularly since my first symptoms appeared.  It is a great tool for me, one I use to write and draw about my MS experiences. It is a great form of expression and I hope to develop this into a stronger emotional release for me.
  6. Sign up for Pilates. Balance, body awareness, stress reduction, flexibility and strength.  These are good things right? I should say so which is why I just signed up for my first Pilates class. I must admit, however, that I am a little bit nervous. I niggle about what may happen while I’m on the Reformer. Will my Lhermitte’s fire up? I am not in the mood for the spine buzz thank you very much. Will my body heat up and cause my legs to burn? Will I have enough energy? Definitely some downsides. Luckily, the upsides outweigh all this and I am looking forward to having Pilates work wonders for my stress and, in turn, work wonders for my MS. I am ready!  I’ll let you know how it goes!

    P.S. here is a great article on Pilates and MS.  Click here to read it.
So, that’s the beginning of my list. How do you cope with MS or your chronic illness?  I would love to add your tips to my guide, just shoot me an email or leave a comment here on this blog post.



  1. Lots of good advice here! I also practice yoga which helps with the stress, and eases some of my pain and spasticity.

  2. Hi Karen. Thanks for your comment! Yes, yoga is wonderful and something I need to do some more. After all, I have a pass for five sessions!


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