"Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body." -National MS Society.
Quite frequently I have people tell me they don't know much about MS. Don't worry, I knew nothing about it either before I got diagnosed, and even then it took me FOREVER to accept it as my reality and start reading about it. I don't usually have a list of symptoms that I can just rattle off out of my head when someone asks, but with this being MS Awareness month, I thought I would take a few minutes to write down and share some of the things I deal with regularly to help raise awareness of this "invisible illness."
Every case of MS is different and the symptoms can change in a blink of an eye. I'm lucky not to need a cane or a wheelchair at this point in my life and I haven't had any blindness. Those are scary thoughts to me and I admire and pray for the MS warriors who are currently fighting those battles.
This is MS, currently, to me:
Fatigue: When people hear fatigue, they generally think, "Ok, no big deal... just get some extra rest. Everyone is tired!" However, MS fatigue is like nothing else I have ever experienced. Before I was diagnosed one of the issues I was having was that I was falling asleep at 6:30-7pm every night. Nothing I did helped. It wasn't until they got me on some amazing medication that I got three to four hours of EVERY day back. However, I still have very limited energy each day and have to choose carefully how to use it. The best way I have ever heard MS fatigue described is that it's not the tiredness that people complain about after a late night, but rather a bone-crushing weariness that makes you doubt whether you can continue to function for even an hour more, much less until the end of the day.
Spasticity: Crazy charlie horses mainly in my legs and feet. This is a pretty frequent occurrence that I am used to so I can handle them 90% of the time just fine, but sometimes I get one that takes 10-15 minutes to pass no matter what we do to try and get it to subside. Those one's will usually make me cry.
Lhermitte's Sign: The best way to describe this is the feeling of an electric shock or buzzing sensation starting in your neck and running down your spine. It can happen when I bend my head down, twist my neck or even if I just get overtired or hot. It's MUCH worse in the summer than it is in the cooler months, but it's the gift that keeps giving all year round.
Numbness/Tingling: When I finally decided to go to the Doctor it was because the whole left side of my body went numb. My foot, leg, arm and hand initially and then it started to creep across the trunk of my body towards my belly button. They put me on IV steroids for 3 days followed by oral steroids for 6 more days... definitely some of the most horrible days of my existence. However, I gained all feeling back besides the left hand and wrist area. If you have ever fallen asleep on your arm and woken up with tingling or no feeling in it, that is what my hand feels like every day. It does vary in intensity depending on the day, but it definitely makes it harder to play the piano like I used to for sure!
Heat sensitivity: Please don't let me get hot or overheated. It makes all my symptoms 1000 times worse and it takes me hours to recover from it. This is the main reason why my hubby bought me a car that I can start from inside my office, so I can have that temperature at a cool 67 degrees before I even open my car door during the hot Utah summer. Life.Changer. Heat sensitivity also makes working out a challenge. I have two fans going when I ride my bike plus the little one on the bike. I still feel completely drained afterwards.
Dizziness & Vertigo: Sometimes my head just starts spinning and I feel like I'm going to pass out. I keep my hubby's phone number on my desk at work because I'm afraid someone will find me on the floor one day. I can't walk and look up or over to the side at the same time... I'll usually lose my balance. Also, don't ever ask me to do a walk and turn sobriety test. I have never had a drink in my life but I will never pass that heel to toe walk in a million years. Nine steps? I can't even take two.
Vision Problems: I can't read anything at all without reading glasses any more. I need to make an eye doctor appointment soon. That's all I'm saying about that.
Eye Pain/Headaches: I get shooting pain behind my eyes and up in my head. It sucks. The eye pain sometimes increases if I CLOSE my eyes. Sometimes when I'm sleeping the pain wakes me up and I have to physically open my eyes to get it to stop hurting. Florescent lights can make eye pain and headaches worse.
Depression: I have had depression for a long time, however, it has intensified 10 fold the past two years. I take daily meds for depression and anxiety and still struggle sometimes.
Shot's: I take a few meds daily, but three times a week I get to have a shot before bed. Don't get me wrong, I am very grateful for meds! The shots slow down the disease progression, however, I am afraid of shots in general and this medication stings going in. I then have flu-like symptoms for hours after as a side affect. I usually take pain meds and try to get to sleep quickly so I can mostly sleep through it.
Ok, that is about all of the symptoms I'm willing to share at this point. 😉
At the end of the day what MS has taught me more than anything, and what I would like to share during this awareness month, is to try to always be kind and not judge others, because you really never know what kind of battle someone is fighting. Even if everything looks totally fine on the outside.
This is MS.
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