There is a difference between what you see of me in public and what my family sees. And there’s a difference between what my family sees and what only the Lord and I know is going on with me.
People outside of my family see me at my best. Even if I am having a challenging MS flare that causes my limp to be more pronounced, generally when I’m out and about I have a ready smile and am able to stand and talk coherently for as long as necessary. It takes a fair amount of effort but I work hard to keep my MS from impeding my ability to fellowship, encourage or develop and maintain relationships. You might see me yawning or maybe I will forget a name or struggle to find a word I’m looking for but I laugh it off and most people hardly notice.
Then there is what my family sees. After a busy day, such as a full morning at church or grocery shopping, my ability to continue working hard on staying alert, standing for lengths of time, processing conversation and making appropriate facial expressions is seriously diminished. I’m fatigued.
Every little thing takes so much more effort than it ever did before- way more effort than I feel it should! My limp/foot drop is often more pronounced, I trip on the hardwood floor frequently, I yawn excessively, I speak very little and my sense of humor fades. I often have to take a nap. But even on days when I have had 10 hours of sleep the night before and all I accomplish is taking a shower and reading my Bible, I sometimes am so fatigued I have to take a nap after only having been awake for 2 or 3 hours.
Such is the random nature of Multiple Sclerosis. I have to plan for down time after an activity. A morning at church requires a quiet, restful afternoon and evening. A day at the fair with the kids requires a full day- maybe two - without any major activities. Two days of activities in a row - depending on the activities- could require 2 or even 3 days of rest. It takes a toll on my entire family when my energy level is low and my pace is slow.
And I yawn when I am fatigued - a LOT! It can sometimes cause my family or others to be offended because they think I’m bored with them but that is NOT generally the case! My brain just has to work harder to focus and process what is being said and longer conversations are just harder on my poor brain!
And then there is always the risk of me taking a tumble. I fell 4 times in July alone. Twice because my left ankle rolled and my balance is bad so I couldn’t recover and just fell. Twice because I just have poor balance and once I start falling, I can’t stop myself from hitting the ground. I try not to fall of course and if I could keep my falls a secret from my family, I would just because I don’t want them to worry about me. But when I fall in my room just trying on a new pair of pants (because I stubbornly refuse to sit down and get my legs into the pant legs first), the loud thud is pretty hard to hide from my family.
Then there are the things I deal with silently that only the Lord knows in detail. Things I don’t mention to my family for a multitude of reasons like not wanting to always be pointing out my struggles, not wanting them to worry, not wanting to focus on myself, not wanting cause them to be discouraged…
I am dizzy ALL the time. A lot of my energy is spent just trying to walk in a straight line and keep from tripping or running into things. And that is one reason I spend so much time sitting down at home. If I DO find myself in a position where I have to remain standing for longer periods of time, my ears start ringing loudly, the inside of my mouth starts going numb and my lips start tingling and losing feeling. Sometimes my brain is processing conversations but not fast enough for me to participate in those conversations so I don’t say anything at all. I lack the ability to communicate my difficulties with speech in those moments which is another reason they don’t know everything that I am experiencing.
There’s the swallowing difficulties sometimes too. I don’t like to think about it but sometimes, when I am really fatigued, I start to have difficulty swallowing. Of all the symptoms MS causes in me, this one scares me the most so I don’t like to talk about it.
So, in case you were curious about the impact of MS on my life, now you know some of what I struggle with. But God is good ALL the time and through each challenge I find blessings.
And now, 🥱 I’m going to go take a nap…😴
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