Everyday Life With MS

Experience Tips Real Life Solutions

15 Ways to Fight MS Fatigue


Hello everyone!

This article on fatigue is short and to the point.  If gives some great suggestions on how to combat fatigue.  Please add any strategies you use in the comment section below!

Thanks!

xo

Lora

15 Ways To Fight Multiple Sclerosis Fatigue

By rcgroth on April 22, 2009 | From conquerms.com

 

Multiple Sclerosis Fatigue is one of the number one symptoms and complaints of multiple sclerosis. And unfortunately one of the #1 reasons that many people with MS end up on disability.  Multiple Sclerosis fatigue is real, and a prominent symptom for as many as 85-95% of those with MS.

Here are 15 ways to fight against fatigue.  Just the little things that you do each and every day can make a difference.

1.   Be aware of medication side effects.  Anti-depressants are well known to have a side effect of fatigue. Talk with your doctor and determine what side effects each medication your on has.

2.   Drink a sufficient amount of water:  Dehydration can cause fatigue and many people with MS don’t like to drink water because they suffer from an over active bladder.- I’m guilty of this one.  Our bodies need water for energy and to remove toxins, so don’t scrimp on this one.

3.   Improper breathing:  Shallow, short breathes will reduce the amount of oxygen coming to your cells, therefore making you feel fatigued.

4.   Not exercising:  Ok, so you’ve heard this one a number of times on how exercise increases energy.  There’s no excuses regardless of what level you are at with your MS.  Bed Top exercise, chair exercise, and standing up –we’ve got you covered at You Can Do It.

5.   Depression:  Not accepting multiple sclerosis, being depressed about your current life will cause depression and the by product fatigue. Using techniques to change your mental outlook and your thinking such as “Theatre of the Mind”. Will allow you to relive all the good things that happened to you in the past and therefore remove depression out of your life.

6.  Too much heat:  Heat increases your disabilities and fatigue and just makes you feel bad. Anytime out in warm weather I can go from walking normally to barely walking at all.  Stay out of the heat, use a cooling vest, and look for activities that keep you cool like swimming.

7.  Avoid Simple Carbohydrates:  White bread, white pasta, and sugar slow you down and fatigue you.  Keep up on a diet of whole foods consisting of fruits and veggies.

8.  Vary Routine:   Toss up your normal daily schedule.  Each one of us needs some variety each day.Plan something for the future that you can look forward to.

9.   Experiment with aromatherapyPeppermint and jasmine essentials oils are known to be energizing.  Put a few drops on your collar of your shirt to smell during the day, or take the container of peppermint with you and take a sniff when your feeling fatigued.

10. Go to bed at the same time every night Most people don’t get enough sleep, and leg spasticity may be keeping you up at night.  

11. Reduce your weight:  Being overweight will make you feel fatigued.  Watch what you’re eating and exercise to maintain a healthy weight.

12. Not Pacing, Planning, or Prioritizing Your Life:  It’s important to have balance in your life. It’s important to balance fatigue and rest.  Devise a plan on what needs to be done and organize your tasks so that they are manageable.

13. Eating Breakfast Everyday:  When you first wake up your blood sugar is low, eating a proper breakfast is an energy booster.  Skipping breakfast drains your energy contributing to fatigue. 

14. Check out your iron levels:  If you’re not getting enough iron that you may feel fatigued.  Eat fish, eggs, fortified cereals, and beans to fight against multiple sclerosis fatigue.

15. Last but not least:  Fatigue is a symptom of MS and you should not feel bad when asking for help.  Spend your energy on what matters and determine what you can ask others for in helping you conserve your valuable resources.

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January 30, 2012 Posted by | Everyday Life, Fatigue, Symptoms | , , , , , , , , , | Leave a comment

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

Tell Your Story Here


I want to know what your MS story is.

  • Are you someone with MS?
  • Tell me your diagnosis story
  • How do you cope?
  • What is your advice to others with MS?
  • Are you a caregiver? – What’s it like being a caregiver and how do you cope?
  • Is your parent someone who has MS?  How does that make you feel?
  • How do you cope with your parent having MS?
  • Are you a volunteer?  How do you help those with MS?

Tell me what it is you experience with MS, how you cope and what you can offer for advice.

I can’t wait to read what you have to say.

May 1, 2010 Posted by | Everyday Life, multiple sclerosis | , , , , , , , , , , , , , | 3 Comments

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

Catching Up


lasvegas-216It’s been a while since I’ve last posted.  I was having a hard time functioning before.  Just getting through everyday living was a real challenge.  But now, life is pretty good…no, it’s great! 

I finally determined along with my doctor that I am unable to handle Rebif.  He recommended taking a two week break to get the drug out of my system and then start on Copaxone…again.

Well, my two week break has turned into 4 weeks.  I feel really good, my energy level is back up, I don’t have as much brain fog and my tremors have really subsided.  I am still not who I once was before my initial onset of MS.  I suffer from nerve damage that may never repair itself and I still fatigue very easily.  At least now I have a quality of life I can appreciate. 

I wonder though, how long will my good health last?  Your guess is as good as mine.  I am enjoying everyday, my daughter, my husband and being more active than I was over the summer. 

Questions For My ReadersI know many friends who have MS and don’t treat themselves with any drugs.  I used to think they were nuts…but not anymore based on how I am feeling today.  What about you?  What are your thoughts on drug thereapy or other avenues of therapy.  I would love to hear your feedback with regards to those questions, to treatment options and answers to these questions:

  1. How many of you have have stopped taking drug therapy for MS?
  2. Have you replaced drug therapy with something else?
  3. What are the major drawbacks of not taking a drug therapy?
  4. What holistic approaches have you taken?
  5. What tips do you have for living an active and productive life with MS?

Looking forward to hearing what you have to say.  Until then…

Stay healthy, keep positive and continue living your best life

xo

Lora

December 3, 2008 Posted by | Everyday Life, Fatigue, Pharmaceutical Therapies, Relapses, Wholistic Therapies | , , , , , , , , , | Leave a comment

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

Life Is Hard Enough Without Help From Your Pharmacy


Ok, I’ve been having a hard time for about the last year.  I’ve tried everything from diets to holistic healing.  I started feeling better about two months ago until my mail order pharmacy was acquired.

I’ve been on Rebif Since October 2007.  Pharmacare my mail order pharmacy took great care of me ensuring I had my meds when I needed them until they were acquired by Caremark (CVS).  That’s when things took a turn for the worse!

Caremark called and insisted that I have my Neurologist fax over my prescription so they could fill it.  I was running very low on my prescription.  As a matter of fact, I only had two injections left and I was messing around with prescription faxes and requests – a lot of red tape when all I really needed was to take care of my health.  Caremark was more interested in their paperwork!

My Doctor’s office complied with their request and faxed the only prescription written for me regarding Rebif.  The prescription was dated October 2007 and instructed a titration pack for two weeks followed by a maintenance dosage.  The date this transpired was May 2008.

Caremark sent a titration pack to me.  I was desparate for my meds so I began taking it.  I never checked the box/dosage since I had been on maintenance since October 2007 – 7 months ago – I was operating on Auto Pilot.  Plus…Pharmacare had always taken such good care of me.

I started feeling really sick.  My symptoms got worse, I had major hot flashes, couldn’t sleep, had severe aches and pains in my muscles, bones and joints and fatigue like you wouldn’t believe (above and beyond the normal MS fatigue which is hard enough to deal with on it’s own).  Anyway, you get the picture.

By chance, a nurse from Sereno called to conduct her routine check-in.  She is great!  She always gives me some great tips to help ease any side effects I may be feeling.  While we were talking, she had me check my box of Rebif which is when we discovered I was taking titration doses. 

Yikes!  When we discovered the error, she put herself into action and got me a new box of Rebif immediately. 

When speaking with the folks at Caremark, I got a half hearted apology and the excuse of “The person who made the mistake is only human”.  Well, excuse me but I am only human too and her “mistake” has cost me 6 weeks of my life, extreme pain, fatigue and loss of time with my 7 year old daughter – something that can never be replaced.  And guess what?  I am still not over her mistake.  I haven’t completely adjusted to the correct dosage of Rebif.

Any of you who know what it’s like to adjust to the maintenance dose of Rebif knows what I am going through.  Lucky me, I got to do it twice!

Anyway, I really wanted to know what Caremark was going to do to make sure this didn’t happen to anyone else.  To date, I haven’t gotten an answer.  I also wanted the executives as Caremark to know what has happened but I have only been able to speak to “supervisors”.

I did report the mishap to the FDA but still, I want to know what Caremark will do in the future.  This is a serious problem and should be dealt with swiftly…hah!  Accountability today is a joke!

Has anyone had this experience with Caremark or any other pharmacy?

July 8, 2008 Posted by | Pharmaceutical Therapies | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 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

Living With Relapses


lora-guru.jpg

 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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