During my pregnancy with my son, I kept an online journal at another blog to document my symptoms and my disease progression throughout the pregnancy. During the time I was not on any multiple sclerosis disease-modifying medication. Here is one of my journal entries.
Multiple Sclerosis and the unknown are enough to drive the most balanced mother in the world nuts. Imagine being pregnant and dealing with an illness that mocks sleep and drags your body through a fatigue hell. Share on XPregnancy & Living w/ Multiple Sclerosis
Rest doesn’t have to
Excerpt from my journal 5/30/2014
My mornings generally start off with exhaustion. I wake up feeling like I just can’t pull my muscles to doing what I am asking them to do, which simply is to, “Wake the heck up”. My brain is awake, but my body needs another two hours to get up the strength to be lifted from its resting place. Despite my body’s delayed reaction to joining the rest of the world, I must keep moving.
I have a child sleeping in the other room that needs to get dressed and fed, I have a miniature man doing flips in my tummy waiting on breakfast, and I have a job that needs my presence for the rest of the day. Having MS does not define who you are, but it does affect your life, and I am reminded of that on a daily basis. I think with my pregnancy, although my other symptoms are taking a break, exhaustion and muscle fatigue are still at the forefront.
I often find myself feeling guilty for not wanting to do anything other than rest. Share on X
I am currently in my second trimester, and I remember the anticipation of finally not feeling so nauseous or tired, which a seemly vague promise was made by all the articles I’d read turned out to be a lie. Well, week 17 finally hit and yes I was no longer nauseous to the smell and/or sight of everything and everyone, what joy!
Then week 18 rolled around and I felt a sudden burst of recharged energy. “Oh yeah this is about to get good”, I thought. Silly, naive, and wishful thinking me, week 21 hit me like a ton of bricks. Suddenly I‘m exhausted again and man does my pregnant body ache.
Why Not Just Sleep You Ask?
The answer to being tired is sleep, correct?
Wrong, not with a person living with MS. See let me explain. Fatigue is not the same as tiredness; everyone will suffer from tiredness at some point. Usually, a good night’s sleep or fewer activities will beat the feeling of being tired. Fatigue is a daily lack of energy or excessive complete-body tiredness that is not relieved by sleep.
In chronic illness, like multiple sclerosis, fatigue may never go away and can disrupt your lifestyle. For me, I suffer from chronic fatigue and pain. The problem with this is that is not a visible symptom, so to most people, I just seem lazy or withdrawn. Sleeping helps, but unlike being tired, even after sleep, fatigue is still there. Besides, no one at my age wants to spend their days sleeping it away, so I fight.
I fight to blend in, I fight to participate, I fight sometimes just to stay awake, but my efforts are never enough. No matter how hard I work on the job, I’ll never receive credit. No matter how hard I work at home, there will always be more to do or that goes undone. No matter how hard I work at maintaining healthy relationships, someone will go unnoticed.
In order to combat fatigue, I have to decide what my priorities are at this stage of my life. I can’t drive far places anymore without wanting to fall asleep behind the wheel, I can’t stay for after-school meetings at my child’s school, and I definitely can’t work excessively long hours or through my lunch anymore.
Most weeks laundry will go undone and meals will be take-out. It’s unfortunate, but truthfully slacking in these areas seem minimal to me, when I envision my life not being mobile.
There is often a sense of uncertainty accompanied by anyone diagnosed with MS. So to survive you have to take control of the things in your life that you can, not cooking a few days a week won’t actually destroy any lives, and asking others to take the wheel may just save me from a physical body breakdown. So tonight I plan to kick my feet with a movie, clear my mind mentally and rest.
So I ask, am I selfish for not wanting to do anything except rest?
As always to stay in touch with all the latest happenings subscribe to our newsletter and join me on Facebook, Twitter, and Instagram!
