Sometimes I Wish I was Invisible

Today was one of those days.

I take a medication that is most commonly prescribed for people with ADHD to help them with focus. In MS it is prescribed for energy and focus. I am on the lowest possible dose and I only take it once every other day. My prescription says to take it up to as many as 3 times a day, every day. But in the past, I had been prescribed a different ADHD medication that I took twice a day, every day for a year or two and then my body started rejecting it - it started causing constant, extreme, debilitating fatigue so I quit taking it altogether and went a couple of years without any medication to help with my increasing MS fatigue. So when I finally agreed to try this other medication, I was not taking any chances. I take it once every other day - more often only when I really need to.

Needless to say, I did not take this medication today. Some times I can make it through a day just fine without it but other days are more difficult. Today is one of the difficult ones.

When fatigue starts kicking in, I get frustrated easily. I get irritable and my sense of humor fades.

Today, I came downstairs and my husband was making himself an omelet for breakfast and he wanted to make one for me too. Sweet idea but I don’t generally eat breakfast so I wasn’t hungry. I’m not active enough to eat 3 meals a day and I have been gaining weight. I didn’t want an omelet but he laid a guilt trip on me so I agreed he could make one for me too.

I sat down across from my husband at the dining room table to eat breakfast and we each also planned to read our Bibles while eating. But instead of a quiet morning reading, my husband started right out talking about his thoughts on Ecclesiastes which is where he has been reading this week. A fascinating topic that I normally would really enjoy but it delayed my time with the Lord and I started to feel frustrated. After that, he decided to “quickly” read a couple of emails from his work to me followed by his commentary. This is the first time today that I wished I could be invisible. Just for an hour.

When I am feeling fatigued, I just need it to be quiet and especially when I am trying to spend time with the Lord. I need at least half an hour with Him at the beginning of every day - it energizes me. And on a day like today, anything that distracts me and prevents me from having the quiet time I need is an immediate frustration. I can’t help it. Fatigue makes it difficult for me to handle interruptions to my routine.

Increasing fatigue makes it increasingly difficult to hide my frustration- especially if I don’t get a few minutes of quiet to help me organize and focus my thoughts.

Just as we were finally starting to read, our son came downstairs for breakfast. Another interruption. I love my family but I had been up for 2 hours and had zero quiet time. Once the distractions were down to a minimum I was finally able to start reading but, sitting across the table from my husband means he is going to continue interrupting my thoughts with comments. I can’t pick up and move to a new location because this offends him and makes him think I don’t like spending time with him. Never mind this was supposed to be my time with the Lord…

I finally worked my way through my reading although it was disjointed and I lacked the ability to really concentrate or meditate on the scriptures I was taking in.

Next I had to get into the kitchen to start making a shepherd’s pie. I had to make it today even though it won’t be eaten until Sunday because tomorrow I will be gone for a good portion of the day picking my daughter up from camp. My husband decided to do some work in the garage while I worked in the kitchen. You would think I could experience a time of quiet then since my son was playing with his iPad. But no, my husband interrupted several times by coming inside and asking me to come out to the garage so he could show me something. I also felt I needed to teach my son how to peel potatoes. By the time the meat and gravy portion of the shepherd’s pie was done and the potatoes were peeled, it was time to fix lunch. I tried to sit down and rest in a chair while the potatoes were boiling but my husband brought in some china dishes that had been his Mom’s that needed to be gone through, inventoried and then put into storage.

The potatoes were done more quickly than I had hoped and I had only a few minutes to rest before having to jump back into the kitchen.

Before our daughter was 2 months old we figured out that the key to helping her calm down when she was crying uncontrollably (as long as she was fed and had a clean diaper) was to spread a blanket out on the ground and just let her kick and cry it out. If we tried to hold her and rock her she would not only take longer to calm down but her frustration would get worse. This was hard for grandparents to take. They wanted to just scoop her up and cuddle her but that’s not what worked for her. The same tactic works with her today. She doesn’t kick, scream and cry now but when she is upset about something, the fastest way for us to help her to process her feelings and get back to her old self is to leave her alone. My Dad was the same way. When he was sad or upset, he went down the hall to the office, closed the door and quietly dealt with his pain. I guess it runs in the family.

But I didn’t used to be that way. I used to hate being alone. MS has changed me in many ways but this is one of the biggest changes and one of the most difficult adjustments for my family to make. My husband has had a particularly difficult time with this new reality and can’t quite make the necessary adjustments because it’s not something he understands or can relate to.

Sometimes my husband interrupts my activities because he says I need a hug. He is the one who actually needs the hug though. This sounds really sweet and I used to really appreciate it when he would interrupt me like that because it provided a welcome break. Now though it frustrates me. On a low energy day I have to keep moving or I won’t finish the things I’m trying to accomplish. I will lose track of what I’m doing and it just takes me longer to get back on track after an interruption. Plus, everything takes longer for me to do anyway so delaying me means delaying my rest. By this time, I was in desperate need of a nap. But I had to finish mashing potatoes, spreading them on top of the shepherd’s pie and washing all the dishes.

I didn’t have lunch because I had an omelet for breakfast but my husband ate lunch while watching TV. He searched YouTube while I was in the kitchen and found a couple of videos he wanted me to watch with him. More noise and more interruptions. I wanted so badly to be invisible!

While mashing potatoes I had to scrape the sides of the mixing bowl with a spatula which caused another very minor delay but I was having a harder and harder time being patient with delays. I quietly sighed to myself in frustration but my husband heard it and immediately questioned me about what was wrong. Having watched my fatigue worsening and my patience waning throughout the day, he still didn’t seem to get that making me try to explain my frustration was only making matters worse. Talking becomes more difficult because thought and communication take mental energy and I was rapidly running low on all forms of energy. I told him he should just ignore me when I seem frustrated but he argued that he often feels that he is the cause of my frustration and needs to find out if there is anything he can do to help. Sometimes the hardest thing for him to do is to just be quiet and leave me alone. As counterintuitive as that sounds, it’s the fastest way to help me beat my fatigue and ease my frustration.

I finally got a nap. It wasn’t a long nap but it was exactly what I needed. I admit that when I woke up, I laid in bed for awhile enjoying the silence, praying and organizing my thoughts. I wasn’t invisible but I was left alone for an hour and that was all I really needed.

I am thankful in some ways for this new perspective. It helps me understand my daughter in ways I didn’t before and it helps me relate to people who get over-stimulated in social situations or are more introverted than I am.

If I could, I would snap my fingers when I need a quiet break and hide myself from view. These are the days I need an extra measure of strength, patience and grace. I always need the Lord. But some days He walks with me side by side and some days He has to pick me up and carry me.