Itchy and twitchy

Another symptom of Multiple Sclerosis is a fairly constant feeling of itchiness in random parts of my body. For me, I often feel itchy on my head and face but sometimes I feel it on my hands, arms and legs and no amount of scratching or moisturizer alleviates it. They are fantom itches - not because my skin is dry or there’s something causing irritation. It’s because the signals my brain sends to the nerves throughout my body are shorting out because the protective coating (Myelin) is being stripped away by MS and my nerves are confused.

I was never that big a fan of the Simpsons cartoon but I am not going to lie and say I never watched it in my youth. My frequent itching sometimes reminds me of the cartoon within the Simpsons cartoon that the kids used to watch called “The Itchy & Scratchy Show.” 🤣

Another symptom of MS is something called muscle spasticity. There are times my muscles - especially in my legs - spasm and twitch at random. This is more annoying than anything - mostly because it makes me feel like I constantly need to change positions and can’t get comfortable. It also means I am more likely to experience muscle cramps (or Charlie Horse cramps) in my feet.

More often than not, when one of these symptoms flares up, the other accompanies it - in MY experience anyway. Not all people with MS have the same experiences I do. It seems the muscle spasticity happens more often at night which makes it really difficult to get the sleep I need to function. Thankfully, this is not a real frequent occurrence for me but there is no rhyme or reason to the timing so I can’t predict it.

Saturday night I had difficulty sleeping. My legs just kept twitching and I had to keep changing positions which isn’t as easy for me these days with my left side weakness. I try so hard not to toss and turn at night because my husband is a light sleeper and has difficulty getting back to sleep after he is awakened. But on a night like Saturday night, I can’t help it. It’s during these nights that I also feel itchy all over my body. Being in bed is miserable on these nights and sometimes I just get up and go into a different room to sit up and read to get my mind off my discomfort. But Saturday night I decided to use my awake time to pray for everyone I could think of and the struggles I was aware of. In addition, I prayed for our speaker who was a missionary to Tanzania scheduled to speak at our church the next day. I prayed for our missionary friends in Poland who would begin their journey back to Seattle on Monday to be here for their son’s wedding. Speaking of weddings, we have friends at church getting married later this month and other missionary friends are back in the area from Papua New Guinea for THEIR son’s wedding in September. Lots if weddings and new marriages to pray for! I prayed for friends trying to have a baby, for friends fighting various forms of cancer, for friends with MS, for my husband and children. And yes, I prayed my muscles would stop twitching and let me sleep.

I eventually DID fall asleep and, surprisingly, my legs felt stronger on Sunday morning than they had all week! I felt more energy and was awake and alert the entire day - no need for a nap and it wasn’t even a day that I took the medication I use on alternate days that helps with energy and focus. It was a great day! It was the LORD’s day! Sunday is my favorite day of the week and attending church is my favorite activity. I really hate when I have an experience like Saturday night because I always feel like the next day is going to be a struggle because I didn’t get the amount if sleep I needed. But prayer is more important than sleep. And sometimes I think that God allows sleepless nights because there are prayers needed during those hours. Satan doesn’t sleep and neither does God. God knows how to mobilize His army of prayer warriors to assist in the fight.

Why Orange and Why March?

My favorite color has changed multiple times over my 53 years of life. I hated the color pink when I was a kid so my parents decorated my room in yellow everything - yellow flowery wallpaper, yellow bedding, yellow curtains… you get the idea. In junior high (they call it middle school now) my favorite color was purple so my parents let me decorate my room all in purple and I had a number of purple clothing items. My favorite color the last many years has been magenta. But pretty consistently throughout my life, orange has been one of my least favorite colors.

So, having been diagnosed with Multiple Sclerosis, I was a bit annoyed at first that the color used for raising MS awareness was ORANGE! Magenta is a much more beautiful color and it even starts with the same letter of the alphabet. But nobody asked me. 😁Orange? Really?

But it has grown on me and I’m starting to kinda like it actually. It is, after all, one of the colors God created and it IS included in the rainbow of promise God puts in the sky from time to time. So, I have overcome my objections to orange as a color representing Multiple Sclerosis fighters and raising awareness for funding research to find a cure.

But why is MARCH, of all months MS Awareness month? No offense to my Mom or others born in the month of March but I have always really dreaded that month. In school it felt like the longest month of the year because it has 31 days and no days time off for holidays - because there are no Federally recognized holidays in the month of March. It is a LONG month, appropriately named - it’s a long MARCH to the end of it! I guess they were running out of months to choose for MS awareness so they settled on March. Or maybe it was selected specifically because it’s a long, difficult month and that helps drive home the fact that MS is a long, difficult fight. Regardless of the reason, I guess I have no choice but to accept that March is the month to make people aware of MS.

But why do we have to pick one month out of the year for the purpose of talking about MS? People with MS live with it 12 months out of every year and, believe me, I am VERY aware of MS regardless of what month it is.

This brings me to my next question: Why, when Multiple Sclerosis Awareness Month is March, is Multiple Sclerosis Awareness Day MAY 30? It seems like it should be a day in March to me but what does logic have to do with anything these days? Maybe the random way in which awareness dates and months are chosen are an homage to the random nature of MS and its’ symptoms.

I obviously didn’t have a say in choosing a color or an awareness month or day but there is one choice I DO have and that is how I am going to live my life. I get to choose my attitudes and how I respond to the hand I have been dealt.

And I choose joy! I choose to allow GOD to handle my struggles, to fight my battles and to carry me through my weakness.

Wherever I Go, I’m Still Me

I have been to a lot of churches in my lifetime. I’ve spent more time at some than at others. There have been various reasons for staying at - or leaving a given church but a lot of the time I left a church only because I moved away. For instance, I moved from my home in Kirkland to Seattle when I left for college so I left one church and found a church closer to my new home. After I got married, we lived in Pennsylvania for about a year where we attended yet another church. We attended churches in New Mexico and Arizona as well before we found ourselves back in Seattle and back at the church where we met. For a long time I maintained friendships with people from almost every church I have attended - because we are all believers with a bond of love that couldn’t be broken by miles. Most of those believers have since passed away - so we lost contact… for now anyway.😉

When churches were shut down for COVID, we watched Charles Stanley and others on TV each Sunday morning. That was a rough time for everyone but one of the most painfully revealing experiences we had was the almost complete and total radio silence from our church. My husband grew up in that church and we met there, raised our children there up to that point and no one reached out to us in any meaningful way during that difficult season. So, when churches opened back up again, we decided maybe it was time to look for a different church. We visited several and finally settled on another church where we were able to get involved and met some really great people. During that time, the Lord was really working in our hearts. No one from our home church reached out to check in with us - there was no indication that our absence had even been noticed. Our names and contact information were removed from the church directory and were added to the directory at our new church. However, thankfully, my email address remained on the prayer chain list at our home church and I sent cards to friends whose names were circulated for prayer - because they were still our brothers and sisters in Christ and that didn't change just because we were attending a different church. My husband and I felt it was time to return to our former (home) church after 2 or maybe it was 3 years of absence. When we decided to return, and while considering the reasons we had left in the first place, I realized that we were part of the problem too! While we bemoaned the fact that no one had checked in with us during the lockdowns, we hadn’t tried to reach out and encourage anyone either. I realize now that this has become a huge part of the problem in (specifically American) churches today - we are too focused on our own suffering to reach out and comfort or encourage others so we go to church but are increasingly isolated from each other. I committed to do my best to reach out and encourage others as we integrated back with our home church while staying in touch with the new friends I had developed while we were away.

We had met some amazing and lovely people at the church we attended during those 2 years of absence from our home church and I have done my best to stay connected with several of them. It has been 2 years now since we returned to our church and the friends I made at the other church have largely stopped responding to my texts. Only 2 people I met during that season have remained in touch. Both also left the church because they moved away - one to the Eastern part of our state and one to Missouri. Why? I’m still me regardless of my location. Was I looked down upon because we had left and gone back to our old church? Was I no longer part of the “club?”

It’s a sad commentary on our churches today that we don’t seem to value relationships with other believers enough to stay in contact when we aren’t physically meeting together each week. People need to know that they are valued. People visit around to various churches looking for a place they can feel loved and valued. But often I think we feel betrayed as a group when someone chooses to attend elsewhere. Our feelings are hurt. And we don’t show that Christian kindness, love and forgiveness we are supposed to be known for.

I am the same person whether I attend my current church or another church. If I am valued, my location doesn’t matter. My dear friend in New Mexico values me even though she hasn’t physically seen me in 25 years or more and I greatly value her. My friend in Missouri values me even though she lives 2 time zones away and I greatly value her. I remain in contact with believers who are missionaries in Ecuador, Poland and Peru and I value them and am so encouraged by their tremendous faith and obedience to the call of the Holy Spirit to spread the gospel. I remain in contact with believers who visited our church for a short time but who now attend elsewhere for one reason or another. I remain in contact with a believer I met in the grocery store. I remain in contact with a member of the Steward’s Foundation board who visited our church last year. I maintain connections with several of my aunts and cousins who are also believers but who live in different parts of the country. I still check in with former neighbors, with members of our church who are elderly and housebound. All of these people need encouragement from time to time and, in some cases, I am the only one in a position to provide it. But it shouldn’t be that way! I should be one voice in a crowd of believers climbing over each other to show love toward those in need of encouragement.

There is a little song I learned in Sunday School that says “Make new friends, but keep the old. One is silver and the other gold.” We don’t live like we value every believer and the gifts they bring to the body of Christ.

The fact is that where (or whether) we go to church shouldn’t really matter as long as we have Jesus Christ as our Lord and Savior! Believers are a part of the Church at large and we should be taking a little time here and there to check in with one another. It doesn’t take much time to send a quick text to say “Praying for you today, anything special I should mention?” Or “Thinking about you today, how are you doing?” Or if you notice someone is missing from church on a Sunday, check in and let them know that they were missed - that someone noticed their absence. A little gesture goes a long way!

The Church is the bride of Christ and we are commanded to love one another as Christ loves the Church. But we aren’t doing that! Our busy lives and our enormous egos get in the way of living out this testimony. We are FAILING each other and, therefore, we are failing God.

We need to remember that we belong to Jesus - our lives are not our own. We are watched and we are known by the fruit we bear. Do we love? Do we encourage? Do we comfort? Do we CARE?

People have the same needs regardless of where they are. We all need to know that we matter to someone. God shows His love toward His people THROUGH His people. When we withhold His love it is sin. When we ignore the prompting of the Spirit, it is sin. I, for one, feel regret and remorse over the fact that I have failed God in these ways and did for a number of years until I felt the heavy burden of that guilt and decided to DO something about it. How about you?

If it weren’t for MS..

MS has an outsized impact on my family. If it weren’t for MS, life in our home would look very different.

Before I get to the point of this post I need to make sure that you understand more about who I WAS before MS took over. I was high functioning intellectually and high energy physically. I was an eternal optimist with a can-do attitude, a great memory and confidence that, if I didn’t know how to do something, I could figure it out. I could work a full time job and stay up until midnight cleaning the house. I had a quick wit and a ready smile. My husband married this person. I matched his energy and encouraged him to be his best.

Enter MS. I was diagnosed in 2014 but things were obviously getting weird a couple of years before my diagnosis or I would not have been seeking medical help. I can honestly say that I knew very little about MS before my diagnosis. And my husband had a neighbor with MS but it was all physical disability for him, no mental or cognitive decline that my husband was aware of. So when I began to have difficulty having a discussion after 9 or 10pm, my husband and I didn’t realize it was related to the other physical symptoms I was experiencing that, together, ultimately led to my MS diagnosis.

As I have said before, I was relieved when I finally got the official diagnosis. I had answers and could get busy researching the disease and finding treatments. I approached MS the way I always used to approach a problem - with laser-focused energy - reading, making spreadsheets, taking notes, talking to doctors, etc. We came up with and implemented a treatment plan and I continued living my life as before… because I still could, for the most part. But MS does not just go away or stay the same forever. I eventually had to accept my decreasing abilities and make some changes - a LOT of changes. But every change has brought one or more new blessing that I am thankful for so that when I look back on who I was, I like who I AM better. I am not saying I like MS, I’m saying that without something like MS in my life I wouldn’t be the person I am now and my children would be different people as well.

So… now for the purpose of this post:

If it weren’t for MS…

1. I would be too busy working to notice the whispering of the Holy Spirit in my ear.
2. I would not have the depth of understanding of my own weakness and need for full reliance on the Lord moment by moment.
3. I would not have had the time to develop my relationship with the Lord the way I have - an hour a day in the Word would have been too much of a sacrifice.
4. I likely would never have felt the need to keep a daily thankfulness journal.
5. Trials would have hit me harder.
6. My children would not have needed to learn so many life skills because I probably would have just done most things for them in the name of efficiency.
7. I would not have had anywhere near as much quality time with my children, paying attention to their needs, listening to their hearts, helping them develop healthy spiritual lives, praying with them, etc.
8. I certainly wouldn’t have had time to start or maintain an active blog.
9. I would have had a full life that would not have been centered in the right place. I would have been saved but God would not have been my first priority.
10. I would not have been able to develop such a deep network of friends and prayer warriors because I would have been just too focused on my own life and family to notice the needs of others.
11. I would not have met one of the most inspirational and beautiful Christian women I know who now lives in Missouri - we were only introduced to each other because we both have MS.
12. I would not have stopped to chat with some lovely people I have met at grocery stores or at restaurants picking up food for our family. I would have been in too big a hurry to look up and notice them.
13. I would not be reading through the Bible with a group of people from our church on a group Bible reading plan as well as individually with another friend from my church.
14. Probably saddest of all, I would not have felt the urging of the Holy Spirit to share the gospel. I would not have been listening to- I would have been too busy.

I know all this because I know myself well - who I was and who I am now. I also know this because I see this in able-bodied and very capable working wives and moms everywhere- even in our church. Such is today’s culture. The pace is so fast that everyone is struggling just to survive each day.

I am a product of what happens when a chronic illness hits and you are no longer able to survive each day at the pace the world is keeping. A forced sidelining and re-prioritizing is what I, personally, needed to be an effective Christian. To be pulled away from the chaos to a private location where the Lord forces me to rest, be still, listen and recognize that I am not as capable of handling my own life as I thought.

If it weren’t for MS I would be self-focused, self-reliant, selfish - but I would be too busy to notice and, therefore, would not make the necessary changes in my attitudes, thoughts and behaviors. My life would not be as rich and meaningful.

Now, it would be okay with me if God chose to heal me. I hope I have learned the lessons He was trying to teach me - if not, I welcome the opportunity to learn more from Him. More than that though actually. He didn’t bring MS into my life just to teach me a few lessons. He brought MS into my life to show me how much and how deeply He loves me. He wanted me to be really listening when He told me. And that fact is so firmly impressed on my heart that no amount of distraction will ever erase it. So, He could heal me of MS any time…😉. But even if He chooses not to, I know I am deeply loved by God and His way is always best.

In short, I am a better person with MS than I was without it - because I am not only saved, but because of MS, Jesus has captured my heart in ways I never could have known possible and I am free and deeply loved.🥰.

So MS is a blessing and I’m deeply grateful.

What you don’t see

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…😴

Bring the Hype!

My daughter spent last week as a cabin leader at camp. When she first got there she and one of her co-cabin leaders discussed the need for them to “bring the hype” as she put it. In other words, put energy in to every activity with the girls in their cabin. The way this worked itself out was that my daughter was helping with the fishing during free time. She is passionate about fishing as it was an activity she REALLY enjoyed as a camper and she has developed a close relationship with the man who comes up to camp every summer to teach the younger campers how to fish and he also teaches spiritual lessons at the same time. So she “hyped” her whole cabin up to go fishing with her - early in the mornings! And as a result, their cabin caught the most fish during the week. Also, there was an activity planned that none of the girls felt like doing. Even the cabin leaders were tired and didn’t feel like putting energy into it. But my daughter and her co-cabin leader infused their campers with energy by encouraging them and by cheering them on and they were the only ones doing so. The activity was a tug of war and their cabin had some of the smallest girls at camp. As a result of their encouragement, their cabin came in second place, beating 6 other cabins. And when it was time for the leaders to compete, their cabin of girls were the only cabin cheering their leaders on. What my daughter understood at the beginning of camp was that all her best camp experiences were when her cabin leaders were energetic and “brought the hype.” She would get terribly homesick at camp and having cabin leaders who were low energy and who didn’t put effort into activities or spending quality time with their campers made her homesickness all the more acute. Keeping the kids active and engaged keeps their minds occupied and it energizes them. Knowing their leaders care about them and their camp experience opens the campers’ hearts to the gospel. My daughter was letting the love of Christ flow through her and that is the reason for a Bible camp - to show the love of Christ to kids who come from a variety of backgrounds and love them in a way that draws them to Christ. We all should “bring the hype” as often as possible!

And believers need to be infused with energy too. The world can really beat a person down and life can be very fatiguing so it is vital that we “bring the hype” to fellow believers whenever we are able. The way that might look could be sitting down next to an older believer who can’t walk around and mingle on a Sunday morning but who might be discouraged and need a little social interaction. Or complimenting a little girl on her pretty dress or thanking someone for a kind gesture. One of the best ways I have found is to send a note of encouragement in the mail. People love getting mail that isn’t a bill or an advertisement. And a surprise note of encouragement can make a person’s week. Encouragement is contagious.

I want to experiment with something. Will you join me? I want to start a “sunshine club” but keep it a secret. Would you be willing to write a note of encouragement to someone at your church, in your neighborhood or even in your own family once a month? Pick someone different each month. Just a quick note letting them know you are thinking about them. We have a directory of the people who attend our church. Maybe send a birthday card in the mail, or a get well note to someone recovering from an illness or surgery. I guarantee it will cause your own spirits to lift and you will lift the spirits of others. Help me “bring the hype” to a very weary population. 😃

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.