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Monday, March 24, 2014

Do you love comics?

Today I am not going to write about myself.  I want to help promote a great project from a fellow MSer.  Eric Cedric is a person who I connected with on Twitter.  He was recently diagnosed in December, yet continuing to carry on with life and the things he is passionate about.

The Dying Breed comic is one of those things.
"An old-school group of heroes diagnosed with terminal diseases fight a corporation poisoning the Earth with toxins."

The concept of the comic very relevant to the current political and social feelings of the world right now.  The diversity of the characters Eric Cedric has created, is both intriguing and forward thinking. 


 Please check out the Kickstarter page and if it touches you consider helping to get this published.


https://www.kickstarter.com/projects/fennec/the-dying-breed-old-school-heroes-running-out-of-t

Thursday, March 20, 2014

Fatigue and M.S.

Fatigue is one of the most difficult aspects of multiple sclerosis to explain to someone.  When I say I am tired, I just leave it at that.  What I really mean is that I am bone weary drop any minute exhausted. I also mean "please don't expect me to make any decisions because I truly am not capable of deciding what to make for dinner tonight."

M.S. Fatigue creeps into all aspects of my life. The physical symptoms are obvious. I want to sleep more, my gait is a bit off,  my speech becomes stuttery, and I am just all together slower.  The mental part definitely affects my decision making capabilities, and my emotional control.

Being so tired also brings on the dreaded G word.  You know guilt.  When I can't keep up with the family and friends I feel bad.  Fatigue has affected my work life in the past. I could not always keep up with the tasks assigned to me.  I would make simple mistakes when placing orders with vendors or paying invoices.  The amount of work I actually missed was not excessive, but I always felt bad and unreliable when I did have to call off.  I would put a full day in at work and then come home and do nothing with my family.

Fatigue also affected my social life drastically.  I have mentioned in earlier posts that my daughters are very active.  I have a house to manage. I like to run when I can.  Something has to give and sadly it has been my social life. Even though I no longer work outside the home,  my life has to be regimented and scheduled or I lose track of things.  Trying to squeeze in coffee or lunch can screw that up for me.  I feel bad though because that makes me a terrible friend.  The sad thing is I love to connect with people. If you catch my interest and earn my respect I will be your friend for life.  I just can't always have lunch with you.

What I want people to understand the most about those of who are affected by M.S. fatigue is that we are not lazy.  We do not enjoy this lack of energy.  When we say we are too tired to do things it is not an excuse.  We are exhausted and if we could change it we would.

Thursday, March 6, 2014

I connect


We all need to connect at sometime in our lives.
Get your connections established, and keep them strong. 

Share why you connect at MSconnection.org
 

 





Tuesday, March 4, 2014

IV Steroids my tips

Isn't it amazing that we don't always know just how bad we have been feeling until we feel better?  It  seems to be my experience,that only until after a round of IV Steroids I can then realize the severity of my symptoms.  I continue to plug along with my life and make small adjustments as needed.  I don't always recognize right away that my short temper, or slower pace is more than anything that just normal daily fatigue.   I tell myself the brain fog I experience when trying to read simple emails, or trying to decide what to make for dinner is just me getting older.

When I finally break down and go for the infusions relief is not immediate.  I actually end up feeling worse for several days following my last infusion. Crying, swollen glands,and severe mood swings are inevitable after an infusion of steroids for me. When I finally start to come down from the steroids and my system evens out, I am always surprised how good I feel.

I am not suggesting IV steroids for everyone.  We all need to find what is right for us.  IV steroids work for me so I am willing to put up with side effects a couple times a year.

If you do go the infusion route keep these things in mind:
 You may not feel better right away, in fact you may feel a bit worse.

 Swollen glands are painful, but normal.  I take ibuprofen to help.

 You will not make good decisions, so don't try.  You may think completely reorganizing all the kitchen cabinets is a fantastic idea, but it is not.  You will just end up on the floor crying, surround by every dish and food product you own.  Really.

Water. Water. Water.  Drink it, bath in it, listen to it trickle to sooth you.
Drink enough water to keep you peeing and it will help alleviate some of the bloating you may experience
My skin tends to be very painful to the  touch and a nice cool bath is very soothing.
Just the sound of water soothes my mind.  Use the sound in conjunction with meditation.

I try to find a quiet place to just hole up in for a day or so.  Everything sounds louder to me.  I stay away from TV.

When you do start feeling better be careful not to overdo, but try to get back to enjoying your life.

This disease steals much from us, but we can take a little back every time we decide to live the best life we can.