My MS Fatigue ft Laura Kolaczkowski 's story

I was reading a blog post "Fatigue or Ordinary Exhaustion?" Posted by Laura Kolaczkowski—January 18th, 2014  And I found myself completely relating to the blogger.  Fortunately, I get enough rest because MS FATIGUE is quite exhausting.  As my life has turned to a new twist (realizing my dream), I must admit that I have slowed down.  This time last year, I was a burst of energy.  

  I wonder what I can do to "snap out of it".  My medication doesn't really help, as it is designed to slow me down anyway.  Staying calm seems to keep away serious relapses and most of the symptoms, and having a great support team allows me to fully function ( I do not have to drive, I do not have to do most things on my own, #marriedlife gives me full time help with the children, etc); however...MS Fatigue really is a drag.  My clients can appreciate the fact that they will not only be working with me, but with a team of professionals from my network that pitch in and assist for very low rates and sometimes even pro-bono!  I have MS, but MS does not have me.  

  When I have MS Fatigue, my family allows me to take a break and just rest/sleep.  Laura Kolaczkowski explained it best when she wrote     "Imagine you are in a deep sleep on your couch and you hear the smoke detector ringing in your house.  You stir a bit and then recognize what the offensive, blaring sound is coming from – oh no, you think, your house may be on fire and you should probably move, but you debate with yourself if you can muster the energy and you slip back off to sleep. That is fatigue – when you want to go, you know you need to go, and yet you can’t."  That's how I feel;I try to move during those MS FATIGUE moments, but just can't. It's a crazy feeling, best experienced during an impromptu nap, in my opinion.  And all other times, I go full speed, because that's mainly what I'm known to do.  Of course, if a smoke detector did go off, I would be up and out of the place...i'll crawl if I have to.  

 Read Laura's blog here 

 http://multiplesclerosis.net/living-with-ms/fatigue-or-ordinary-exhaustion/?utm_source=weekly&utm_medium=email&utm_campaign=140122&uuid=6e7747038173f66d1a5c4105b27db477 

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Recipe: Avocado and Onion Egg White Omelet

Original Recipe Yield One Omelet

Ingredients:

• 3 large egg whites
• 1/2 avocado
• 1/2 medium white onion, sliced or diced
• 2 tablespoons olive oil
• Sea salt and pepper to taste

Directions:

1. Put 2 tablespoons olive oil and onions into pan or skillet over medium heat. Cook onions for a few minutes.
2. Pour egg whites into skillet and continue cooking until egg is fully cooked.
3. Add avocado to half of egg. Flip the other half of the egg over the top to make the omelet.
4. Remove from heat and enjoy!

For a spicy omelet, add 1/2 fresh jalapeno or 1/2 teaspoon red pepper flakes.

Photo Credit: elisson1.blogspot.com

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It takes a Village

 Last night, after speaking with my husband about my daughter, I had a chance to talk to my daughter's father face to face.   We discussed her progress in school, and in general.  Despite my fears and insecurities, we are all on the same page in wanting her to be happy and successful in school I called my aunt Jackie today to tell her about the issue with my daughter and my MS today to get final assurance that I'm making the right decision towards my daughter.  

 Last night, after I wrote in my blog about my fears.  But those are just fears.  Fear is the enemy.  EVERYONE wants what's best for my daughter, so it may be a good decision to allow her to live with her biological father for a while.  He'll never take custody from me because I'm a good mom..  I have MS.  It gives me limitations sometimes and perhaps a little break will help me (and her) in the long run.  We've decided on NOT making two homes for our daughter (there and here).  With two homes, she could live with both of us but will lack stability. Since she needs a little more assistance with her school work, he is just really too busy with his own life to be able to truly is and he is not sensitive towards her disability which is ADHD.   

   so we decided just to bring in additional family in house to assist. With this new door that has opened up, I think it's the closing of the door of me having no control over a lot of things in my life.  It's been a long journey, and I'd especially like to see how much I can begin to save and invest into the future. Being disabled, I always worry about my limited resources.  I used to think that if I could let others take care of things for me, I could relax and not have to worry about them.  But I'm finding that the more I give control away, the more I lose.  I don't want to lose anything else.  I don't want to lose anymore. 

  With this new change in my life, which should begin later this month of December 2013, I am thinking about all of the other things in my life that will change and that can change.  Certainly, I will have time to reflect and perhaps write more.  I really want to write a few children books, etc.  I also have a lot of ideas about what to do with ON THE RISE MAG, an ongoing community service  (you may as well say) that I provide.  On a personal note, I am starting a new money saving / money gaining goal.  I've done this before and I want to do it again, just to see how much I can earn/save.  I'd like to do more things and to have more things and to provide more things, so this is the way to go.  There is so much more I want to do, as well.  It's not that being a mommy has held me back...but just the opposite.  Being a wife and mother is motivating me to do more, and that starts with making sure I'm healthy, happy, and at peace.

  I've got roughly three weeks before my life takes on a this new change.  I hope to spend as much time with my daughter as possible. She and I are so cute...we cry a lot because when we thought she was going to have to leave really didn't know how to cope with that because we've never been apart before. It's only would have been for a semester, but it seems like a lifetime, lol.  But, she's a daddy's girl just like I was...so if he can learn to appreciate that more and maybe he'll be able to appreciate the fact that I know what she needs and I only want the best for her and the best for her Is to remain with me :) 

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When One Door Closes (throwback post)

Recap: what i was feeling minths ago...When one door opens......  I've always loved this saying.  It reminds me that it's not the end of the story; just the beginning of a new chapter. This year a lot of doors seemed to close.  Close friends and family turned their backs on us, but so many more reached out and pulled us closer.  The year is almost over, and though I'm sure a tad bit more "closures" will occur, I'm thrilled at the possibilities of things to come.

  I feel as though I'm coming out of my relapse.  Last night was a hard night because I was incredibly sore and had a bad case of insomnia.  

  I'd been nervous about my daughter's arrival home today. Her father expressed some concerns regarding her happiness....and I'm a bit torn. It's hard co-parenting with someone outside of your home, and even harder when there is a "microscope" capturing your every move.  My daughter has been falling behind in school and so I've restricted her "fun", but somehow she's turned it around to seem that she's being treated unfairly.  It doesn't help that she's falling behind in school, because some kind of way I think I'll be blamed for that, too.  Parenthood is challenging, anyway, but parenting with MS is moreso.  I'm thankful that I have a support system at home (husband, older children, relatives)...but I'm finding that I'm falling behind because I probably need some female assistance, too.  This is the first year I've not had assistance from a female friend/relative to assist with the day to day tasks that I face in caring for my home and children, but I believe that will change soon.  We need another woman's touch.  :) The men just don't seem to understand, lol...and my daughter is eleven (and I'm forty), so they are having to deal with two different ends of the spectrum when it comes to the women in the house.  

  I've had a lot of pushback about me homeschooling my daughter, but I really want a chance to do more one on one with her.  I pray that I will be able to at least try. I've been considering some different online options, and I'm in the process of researching them.  It's harder to assist my daughter (who has ADHD) with her current school work because she doesn't bring all her assignments home. She leaves things behind in her locker or a classroom (the latest left behind is her bookbag WITH her glasses in it). When she brings assignments home, she has either written them down wrong, or not at all, OR she just makes up a different assignment.  I am in a network with other ADHD children, and this is very common.  I'm not really supported by her other side of the family when it comes to her ADHD. It's something that is brushed off.  "She just needs her behind whipped", they tell me...but I don't spank her.  I try to understand.  I try to deal with her constant shenanigans (she always leaves class to go to the nurse's office, or finds some other excuse to not be in class).  She's not really understanding what is being taught because she does not like the environment there, and says she needs more one on one instruction.  The only way I see that happening is if she's homeschooled....so I pray one door will open regarding that. 

  For a mother with MS raising children, I'm always concerned with my children's well being.  I can honestly say that despite my disease, I am the best parent for the job.  I have to grow stronger because I am committed to parenthood to the fullest degree.  MS patients can achieve anything with the right support team, so I'm strengthening my team in numbers. One of my biggest fears has always been that if my children were removed from my care, they wouldn't be protected like I can protect them.  My son's father, years ago, used to always try to take the boys so that he wouldn't have to pay child support.  However he was never really stable enough to care for them, so I fought long and hard and won the right to care for my boys.  Now I am going through that same type of anxiety, but this time it's just beginning and I'm not sure where it will lead.  My MS has progressed and so I can't take on a lot of outside stress, and my fears are that any kind of custody fight would cause me to relapse, win or lose.  Normally any kind of confrontation or struggle/fight causes me to relapse. Sooo...everyone just keep me in your prayers that NOBODY tries to pull anything on me regarding my children.  I <3 them.  I'm sure another door will open up for me to have more support.  I'm certain of it.  

 #SupportMSAwareness and #ParentingWithMS 

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We're Not Drunk We Have Ms

This was a jpg I found online and went to the facebook page

https://www.facebook.com/WereNotDrunkWeHaveMs

I liked it, of course.

You should like it too. 

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TO BLESSED TO BE STRESSED

TODAY IS A GOOD DAY SO FAR.  I'VE HAD THIS RESTLESS REST THING GOING ON.  HUBBY WENT TO WORK AND BEFORE HE LEFT, HE SAID "IT'S SATURDAY, SO YOU SHOULD BE ABLE TO GET SOME REST TODAY'.  INITIALLY, THAT THREW ME FOR A LOOP; BECAUSE I WAS THINKING, "WHEN DON'T I GET A DAY FOR REST".  THEN I REMEMBERED....

My day to day is often quite hectic, even though it's not meant to be.  Stress is the one thing that I do on a day to day, oftentimes not even meaning to.  Thoughts about children, bills, what's for dinner, when do I get another writing gig, who's gonna walk the dogs, etc.  LIFE seems to create these little stresses, but I thank GOD for those who love me running interference so that stress won't overwhelm me too much.

This question was posed to a group of MS patients to complete:  When I get stressed out, it affects my multiple sclerosis by ____.

The answers are what I'd expect, living with MS myself.  

Terri says Irritable, weepy, shaky, weak, numb and upset that no one gets it!

Sally says Dizzy and fatigue!!!

Gail says Giving me a really bad headache and neck pain and blurry vision.

Catherine says Making all my symptoms come out at once: can't talk, tremors, balance, confusion, depression, tears, you name it...

Paula says Causing a trigeminal neuralgia attack (stabbing electric shocks).

CarrieAnne says Cog fog badly, weak, fatigue and muscle spasms right between my shoulder 

blades all the way down backs of my legs. Happens very quickly.

Judy says Making me exhausted and making my pain level go off the charts.

Mark says Overall fatigue and anxiety

Danny says Muscle cramping and vibration threw body

Mary says  I start talking slurred

Storm says  Headaches and MS hugs (intense tightening around your chest, along with pain and a burning sensation.).

Stacy says  Right eye pain back to my ear, brain fog, memory loss 

Darrin says Makes my legs weak and throws my balance off, and adds to the constant pain i already have!!" 

Paula says Makes my esophagus spasm, do swallowing is difficult,.and i also get too much saliva

And there were a host of other answers.  For me, when I get stressed out, it affects my multiple sclerosis by giving me additional pain, headaches, seizures, slurred speech, and everything everyone else said.  Now that my husband works outside of the home, I tend to stay even more to myself because, as you can see, stress is not something to play with. What this means to me is that my circle of friends and family that can come around is quite limited.  I just don't trust people enough to allow ME to be compromised by THEIR issues.  I'm learning to overcome my fear of people because, if it's mainly in my mind, I can overcome it.  Who knows?  If not, I've lived with MS and over the years it has slowly taken a lot of the "extra" out of my life...so that can't be all bad.     

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What Do You See

MS is a weird sort of thing.  It doesn't feel the same way from day to day.  One of the things I don't like about MS is that I never know if it's MS making me feel some sort of way, or if  it's me having a "regular" human experience.  One day, as it would seem, everything just sort of merged into thing big compilation of "ME" and "MS".  Yes, some would say "that's just in your mind".  To them, I say "my point exactly. 

Today I finished a load of laundry.  Granted, it's taken me since my husband's first off day to do this, so that was ....Sunday.  Sunday I sorted the clothes.  A delay in me completing tasks is something that has come to get on my nerves...but there it is.  It takes me FOREVER to get something done.  Was I doing other things?  YES.  But for some reason, I could do everything BUT the laundry, as if there was a mental block not allowing me to get to it.  It was very frustrating because often times I would think about it and then feel almost paralized to the point where if I just took my mind off the laundry, I could move again. No motivation. I'm not lazy.  I truly wanted to get the laundry done.  It's just a small load.  But since I couldn't get that done until just now (yay!!!), I did happen to make it to friends and family day at church, I was able to assist in my matchmaking group, I did a fabulous job with a regular monthly client who was happy to see more quantity (always a good thing when I can make magic happen).   I also landed columnist for our magazine ( a new brand debut).  I do what happens :) But I'm here.  I have to be thankful.  

Peace <3  

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