Faith, Multiple Sclerosis, Not Today MS, Uncategorized

A (bad) day in the life

No one wants to talk about their bad days, or at least I don’t.  My husband is probably the only person who knows when I’m having a bad “MS” day, but most the time I don’t share all the details because I don’t want to worry him excessively.  I’ll say I should work on this… I should work on being more transparent and ask for help when I need it.  Publicly giving permission to my people to convict me of this :).

It’s also important to note this is likely less than 10% of my year… and the severity varies greatly… most of these “bad days” I am still able to do everything I need to do and it doesn’t interfere with my life.  

So, here are some example of my “Bad MS Days”.  They vary and are often unpredictable, as is this disease which makes it so darn scary and no fun.  Also, as you will read, they are usually combined with each other… an Insomnia Day will almost always lead to a Fatigue Day which will likely lead to a Dizzy Day and so forth.  Or they can be all on their own for no reason whatsoever.  Super annoying!

FATIGUE DAY: If I’ve not gotten enough sleep, either from Insomnia (will discuss that in a bit) or for some other reason, I can end up with one of these days.  Generally, it means the alarm goes off and I don’t budge.  My husband has gotten good at spotting these days and turns my alarm off and lets me sleep until the last possible minute.  I feel very foggy as I finally wake up and begin my day.  The coffee starts flowing and before I leave the house and I’m usually able to get moving on time and not let it mess with my plans for the day.  I try to conserve my energy on these days.  If I was planning a run, I move it.  If I can ask a friend to take care of carpool that evening, I do.  If there is an errand that needs to be run, I move it to another day or I ask someone to help out.  I’m blessed to have a HUGE, AWESOME support system and I’ve gotten better at asking them for help when I need it.

INSOMNIA DAY:  For whatever weird, crazy reason, sometimes MS can cause Insomnia… I would take a fatigue day over an insomnia day, any day.  I hate not being able to sleep!  Usually, it begins with me suddenly being WIDE-AWAKE at 3:00 am.  I try everything… sips of water, something warm to drink, taking off my socks, putting back on my socks, removing blankets, etc.  Usually I end up praying or reading my Bible.  I try to view it as extra time with God. Sometimes it ends up being much needed and I don’t suffer too much for it the next day.  Often though, I’m able to finally fall back to sleep around 5:00 and have a very hard time waking up when the alarm goes off.

SICK DAY: My medication works by suppressing my immune system… which means I have a harder time getting over viruses.  I actually stay pretty healthy and have been able to not catch a ton (knock on wood!) since starting treatment, but I have noticed viruses hit me harder than other members of my family and usually take longer for me to get over.  I hate being sick. I’m the worst patient ever.  I don’t like to rest and I don’t like to have to call in or cancel plans.  It’s infuriating to me.  But, it’s part of life and I try to get over it :).

MIGRAINE DAY: My whole life, long before diagnosis, I noticed certain smells triggered migraines in me.  Migraines begin with me smelling something strong and chemical… I don’t go into nail salons or tire places because they usually are the worst for me.  Even walking past the tire center at Sam’s has sent me into a migraine so I try to hold my breath while passing it.  A migraine begins with a watery line in my vision, usually just above or below my line of sight.  I have roughly 10 minutes to get somewhere to lay down.  Over the course of the next 10 minutes, the lines shift and move, causing nausea.  When my vision begins to turn to normal, the headache sets in.  Usually it’s all over the front and sides of my head, but sometimes it’s in one specific spot.  The headache usually responds to ibuprofen and I only have to lay down in a dark room for about an hour or so.  I will say these days are VERY RARE for me post diagnosis, diet change, and treatment.  I think I’ve only had one in the last 2 years and before that I was having them about every 3 months.

DIZZY DAY: These days can be as simple as feeling slightly off balance, or as bad as causing nausea or vomiting.  Again, VERY RARE, but alarming and no fun when they occur.  If it’s only slight, most people don’t know anything is wrong with me.  On the worst days, I have to stay in bed and hold the walls when I walk anywhere.  The bad days are usually combined with something like an illness or lack of sleep or something.

NUMBNESS and/or TWITCHING DAY: Again, this is typically combined with one of the other days… I may have weakness or numbness in my right arm, tingling in my right toes, or in my right cheek.  I’ve also had muscle spasms and twitching in my fingers, arms, or tongue… yes, tongue.  That’s the weirdest feeling ever, if you were wondering :).

EMOTIONAL BASKET-CASE DAY: I sound like a broken record, but this is also usually combined with another bad day. It’s very rare, but when they happen I find it hard to handle something upsetting, stress, or someone being rude to me :).  Usually it means I burst into tears at the drop of a hat or just find I’m more emotional than normal.   On these days, you will usually find my husband doing something insanely sweet for me and the gesture is usually able to snap me out of it.  I adore that man so much.

Yuck.  I hate talking about all of that.  Most days, I don’t even think about having MS. I think that’s important for readers to understand… This disease does not rule most of my days and I never let it rob my joy or my peace!  But, not every day is roses and sunshine and even though I feel like I’ve taken HUGE steps to improve my health, I still have MS and I still have some bad days.

My blog is called “Not Today, MS” because I REFUSE to let my life be dictated by this disease.  Even on the worst of my bad days, I search for the joy and make that day about something other than the sickness…  I take advantage of extra snuggles from my people or catch up on some Netflix or read my Bible and pray.  I refuse to wallow or despair. God can and WILL use all of our bad days for HIS GLORY!  We just have to let Him!

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” ~Romans 8:28

1 thought on “A (bad) day in the life”

  1. This was an absolutely amazing post with great information! I understand having those bad days and it is so frustrating! I have suffered headaches/migraines my entire life. When I was in kindergarten, I would get off the bus and have a miserable headache and have to lay down for the rest of the night. I have always been a super emotional person but some days are way worse than others. I used to allow comments people would make upset me but now I just feel sorry for their ignorance. I really do my best to not allow MS to control my life and continue to do all the things I want to do. There are days when my pain tries to take over but I try to ignore it!! I feel the most important thing when dealing with MS is to always have a positive attitude. I always say “It could be worse.” I hope you are doing well today and thank you for much for sharing this fantastic post! Sending you love and comfort!!!

    Liked by 1 person

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