Everyday Life With MS

Experience Tips Real Life Solutions

Have You Ever Wondered How To Talk To Someone with MS?


I came across a blog entitled “AnonyMS“.

The first article I saw was entitled “How to Talk to Someone with MS”.  For lack of a better response…OMG, finally!  Thank you for writing this article and putting this issue into perspective.

Please read the article here.  If MS or any other circumstance for that matter,  is a part of your life, this article will give great insight, reminding all of us that the disease does not define who we are.  Being a wife, mother, sister, friend, co-worker, artist, author, performer, contributor to society  and the many other roles we play defines who we are as a person.

AnonyMS makes a great point when she says “Sure, it’s helpful to have an MS mentor–and chances are, your MS’er has already reached out to someone…”  Many friends and family members may be offended if they are not the person the MSer reached out to.

Having MS is very personal.  You are no longer in control of what your body does.  Some of the things your body does just doesn’t make for good dinner conversation and is uncomfortable to talk about.

Think of it this way…You would never expect a sexual assault survivor to discuss every last detail of their ordeal with you and how they are dealing with it and the treatment options they have selected or not selected to help them cope.  You should never expect the same of someone who has been diagnosed with MS.

Yes, you are a close friend or family member to this person but you are not living the battle they are fighting.  For someone with MS, it is easier to reach out to a total stranger, a blog, or a support group.  Even though no one experiences the same symptoms, they all experience and know The MonSter intimately.

Let your friend/family member bond with their new family found in MS.  If they want to reach out to you, they will, but on their own terms and their own timetable, just like a survivor of sexual assault would.

Your job, be their friend and family member they new before MS, not their counselor.  Talk to them just as you did before The MonSter started to reside within them.

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May 5, 2010 Posted by | Everyday Life, multiple sclerosis | , , , , , , , , , , , , , , , , | 1 Comment

Living With Relapses


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 In 2005 I was diagnosed with RRMS.   I didn’t relapse for almost 2 years and now I can’t stop.  Yesterday I started my third treatment of Solu-Medrol hoping to slow down the progression of the disease. 

Relapsing is hard, it’s caused me to change my life completely.  I have gone from highly active to very sedentary.  I hardly leave the house and I had to quit my job.  I love to work, network, etc. but MS has taken that away from me…to an extent.  I refuse to let it completely take over my life.  I decided that I would work from home which would give me the freedom to rest when I need to.  I searched on the internet for valid stay at home jobs.  Those jobs are far and few to come by.  So, I created my own company and have lots of work that keeps me right here on my couch or in bed when I need to be there!

I have a company called Virtual Assistant On Demand.  Basically people outsource projects to me such as

  • blogging :o)
  • power point presentations
  • online advertising
  • PR
  • Brand development
  • Website SEO

Anything that involves a computer.  Check out www.virtualassistantondemand.worpress.com for more info.

If you need help transitioning from commuting to telecommuting, let me know…I will help you.  It’s a lot easier to be home, the struggles are still there but you can manage them to an extent, taking some pressure off.  Let me help you.

Be strong, have faith, look for that silver lining…it’s there.

xo

Lora

March 20, 2008 Posted by | Fatigue, Relapses, Working | , , , , , , , , , , , , , , , | Leave a comment

   

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