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.

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

To Understand it You Have To Live It


Take a moment to live inside my body. It goes beyond the every day trials people may face such as being tired after a long day at work, getting the flu, not understanding a math problem or even spraining an ankle. Those trials have a beginning, a middle and an end. My MonSter is here to stay, living inside of me, decaying my body until the day I leave this earth.

Once there to experience your moment within my MonSter, you will experience:

A fatigue like no other

The constant poking of pins and needles growing to a crescendo of stabbing daggers and swords

Complete weakness – the inability to move, to help yourself to the bathroom or a glass of water when you so desperately need it

Confusion. Something you used to do with ease and perfection is now a struggle and riddled with error

Total isolation

When I am lucky enough to have a good day, I can be fun, happy, active, alert, and make total sense. Demands grow, people forget about the MonSter lurking, and waiting to time it’s next attack. The MonSter attack plan is a shrewd one. Taking liberty to attack at the most inopportune times – completely corrupting the peace that had settled in its place since the last attack.

The MonSter is never fair, understanding or selfless.

The MonSter is always selfish, spoiled, demanding, and hurtful.

If you know someone with MS, try to understand the battle and warfare taking place within their body. Understand their good days will not last forever and for that reason, make their good days all the more sweeter because the bad are just around the corner.

If you have MS and are not being heard, or don’t quite know how to explain what is going on, let me be your words. Share this with those who need to live in the battlefield of MS, just for a moment.

xo L

April 29, 2010 Posted by | Everyday Life, Fatigue, multiple sclerosis | , , , , , , , , , | 2 Comments

I’m Back – embarking on a NEW journey


I have been really struggling lately – fighting so many symptoms but mostly fatigue.  It’s an effort to do almost anything.  I am totally convinced that diet has so much to do with it.  As I wrote in earlier posts, I was attempting to follow a gluten-free diet.  Easier said than done.  At first I was really good and did well with it.  I began to feel better but then slipped into bad habits.

On Friday, I found the book “Healing Multiple Sclerosis   Diet, Detox, & Nutritional Makeover for Total Recovery” by Ann Boroch.  So much of what she wrote in her book made sense.  After reading her book I took a close hard look at my diet and realized what a disaster it was.  Loaded with sugar and processed foods it’s amazing my body is functioning at all. 

Our grocery stores are jam packed and jelly tight with fatal foods.  It’s no wonder that not only are we obese but are children are following right in our footsteps!  As a nation we have adopted such an unhealthy lifestyle and we are passing it down the generations. 

All of the recommendations in Ann Boroch’s book were amazing.  I have comitted to eating the right way for my body.  I am staying away from sugars, processed flours, red meats and porks.  That means my diet will consist of mostly chicken, fish, vegetables, fruit – but not a lot of fruit as it is a form of sugar and whole grains. 

Today I tried a new grain…Quinoa.  I’ve heard about it but never tried it.  This grain is awesome and has a nutty flavor.  I love nuts so this will end up being a staple in my home now. 

I expect that the first two weeks will be difficult as I detox my body and get rid of the sugar and caffeine.  I love my coffee but I love living life more so the sacrifice will be worth it!

I will keep you updated as I go along on this journey to better health.

xo

Lora

August 24, 2008 Posted by | Uncategorized | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Swank, Paleo, Bible Diet?


Hello!

I’ve been doing my own version of the SwaPalible diet.  Yes, a combination of the three.  Really, what they all boil down to is eating nothing processed.  Eat whole foods and eat natural.  If you can’t pick it or grow it – don’t eat it.

I repeat to myself on a daily basis – garbage in – garbage out.  If I feed myself garbage, I can expect my body to become garbage. 

Prior to my relapse in July, I followed this diet pretty closely – eating nothing but whole foods.  I felt wonderful.  Then, I got lazy.  I paid for it.  Now, I am working at eating only what’s good for me.  If it improves the quality of my life, I need to embrace it.

xo

Lora

April 23, 2008 Posted by | Uncategorized | , , , , , , , , , , | 2 Comments

Diet and Wholistic Healing


It’s been some time since I’ve written last – sorry!  I need to update you on how the new diet is working.  It’s hard making all the changes you need to.  I am doing baby steps.  Cutting things out here and there, getting used to it and then moving on.

The other thing I have been doing is Body Talk.  I am going to a Holistic Healer and it’s working.  Search for someone who practices Body Talk and try it.  There are no medications or anything invasive about it.  So far my numbness, fatigue, brain fog and a multitude of other symptoms have either gone away or dramatically decreased. 

I almost feel NORMAL!!!

I am not one who would actively search out something like holistic healing but I was at my witts end!  I am glad I did!  Let me know if you have questions about it and I will do my best to answer them.  I try not to question what’s happening – I go with it!

xo

Lora

April 9, 2008 Posted by | Diet, Everyday Life, Fatigue, Wholistic Therapies | , , , , , , , , | Leave a comment

Today is a NEW Day!


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From now on lets approach every day as a new day.  One that is filled with:

  • Hope
  • Happiness
  • Fulfillment
  • Fun
  • Enjoying what we have at the time
  • Not concentrating on our issues

Those are some of the hardest things to accomplish when you are dealing with some pretty heavy symptoms or issues relating to your MS.  Sometimes it’s just easy to have a pity party, but that’s exhausting too.  Live and do what you can today.  Make the most of the day and your family. 

Many times MS upsets our plans for the future…or so we think.  You may have been clicking along on a mission or plan to accomplish something when MS stepped in and changed everything.  That happend to me.  I was on one path and MS led me to another.  My life is completely different from what it used to be.  I can’t say that it’s better or worse, just different.  I am still getting used to the changes. 

Changes are good because they offer so many areas of opportunity.  You just need to be creative.  Think outside the box and then put it into action.

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Think in terms of:

  • What did I always want to do/learn but never had the time because of my busy life before MS?  If you had to slow down your life because of MS it’s hard to discover what it is you should be doing to be productive.
  • How can I make a difference in my life or someone elses?  Could you be a resource for someone?  An advocate?
  • What hobbies or interests do you have?  Expand on them.

Tell me what it is your struggling with and let’s come up with a plan for you. 

Remember, change is GOOD!

March 22, 2008 Posted by | Raising a Family | , , , , , , , , , | Leave a 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

Welcome To Everyday Life With MS


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Hi!  My name is Lora, I am 39, a single Mom of a 7 year old, starting a new business and have RRMS. 

I was diagnosed with RRMS in August 2005.  I was in remission for almost 2 years using Copaxone.  In July 2007 I relapsed and as of March 2008, I haven’t gone into remission.  It’s not easy…at all.

I am always on the computer looking for information and others who have experienced what I have.  Most of all, I am looking for tips on what helps. 

On this BLOG I would like to exchange ideas with regards to MS and:

  • Diet
  • Raising a Family
  • Various Therapies
  • Excercise
  • Fatigue
  • Having a Career
  • Insurance
  • Disability
  • Relapses
  • Symptoms & how to deal with them

And, so much more.  If you have ideas of what you would like to see discussed or you have ideas, please let me know.  I find that know how others deal with their diagnosis and the tips they have found that really help.

March 15, 2008 Posted by | Uncategorized | , , , , , , , | Leave a comment

   

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