Weaknesses

Many of you know me in real life. I am very determined and usually have a good attitude. But, today I want to talk to you about weaknesses.

My physical weaknesses are obvious. I’m not physically strong, and I’ve tired out easily since the MS became a thing (especially because I always seem to push myself so stinkin’ hard).  I know that there are a lot of things that I can’t do, and I have mostly stopped trying to do them. I could make this a whole big long post about the many struggles I’ve had with this over the last decade, but I don’t want to. Just know that it was a process, and it certainly didn’t come about easily.

The internal weaknesses of every person are unseen and personal. It was a huge mental battle to overcome the fact that I couldn’t take care of Lydia by myself, but I’m finally okay with it. I love the nannies we have that come to help me at home when Doug is at work! I can’t pick Lydia up and move her, but I can entice her to come to this other corner of the room with me. I can’t keep up when she’s crawling away (foot drop), but I can grab her foot and drag her back toward me, which makes her laugh (she laughs when I’m trying to crawl after her, too). I can’t walk around with Lydia, but I can hold her and cuddle her when I’m seated just fine. I can’t manage taking Lydia places on my own, but God always sends somebody to help me. Besides, it’s way more fun for them to get to be my blessing. Another plus? I usually get a good chat out of it.

I manage my energy well. I no longer try to do the things I can’t, but instead be the best at things I can. I am thankful for my physical weaknesses, because they don’t allow me to be the perfectionist at everything I wish I could be. That, in all honesty, is not at all realistic. I’ve done the whole “trying to be perfect.” And it’s exhausting. When I think about how I can’t physically do something, I think about how trying to do it could hurt me more than help me. This is where I am at right now.

This last week, I was talking to God about my hopes for healing one day. His response? “Don’t focus on what I can do. Focus on what I am doing right now.” Since this revelation, my eyes have been opened to random conversations I’ve had with strangers here and there, and how much it has impacted. Maybe it has impacted them, but each time, God tells me, “See? I have a reason for everything. You were needed right here, right now.” Why do I have to go get infusions every month for my medicine? To have wonderful conversations with other patients and the nurses who work there. Why was it taking me so much time and energy at Walmart this week? So that the couple walking past me could help put my groceries into the trunk of my car. Why do I still have my blog, though it has fallen out of a routine and is random, most of the time? So that you, the person reading this post right now, might just be encouraged.

Anna

An Update on My Physical Abilities

A year ago, I was just getting strong enough and able to take care of myself again after living with my parents for three months. After that, I could move back home with my husband in Kentucky. We (Doug) moved into a one story house and had made sure it was  handicap accessible before I got back. Pregnancy plus multiple sclerosis (MS) is ideally supposed to help the MS, even though it’s not on meds. Well, as I learned (even though I almost already knew), I am an exceptional case. Without meds, the MS in my body was pretty terrible. I’d gone without meds for a few years right after I was diagnosed with MS, until we found a drug that worked. For the first time in ten years, I was going MS-med-free, and it seemed to be going the same way. I would get an infection, and it would trigger a relapse. New lesions appeared in my brain during pregnancy. The day after I gave birth, I tried a new med that’s supposed to help patients with MS, too (not that it’s been researched tons yet). And although new lesions didn’t appear in my brain, the weakness was still pretty terrible.

In October, I was hospitalized when I became septic with a bladder, kidney, and blood infection all at once. When I get sick, I usually lose all strength in my body. After I was discharged (and stronger because antibiotics were helping me), I started some home health physical therapy (PT) in November. In January, I started up on outpatient PT, starting at the strongest I had ever been than working with that particular PTist, Judy. (She’d worked with me when I was pregnant, too.) I told Judy the first day I saw her that I wanted to ditch the walker. And pretty soon I was walking with two arm canes, and now, if I walk with an arm cane, I only use one! I still use my walker when I’m real tired, but those times are limited. (Yay!) Then, I started up on this walking machine thing called the Lokomat. image

Basically, I go through the motions of walking, with about 50% of the effort on me. I also am not bearing any weight. For the first time in years, I don’t have to use most all my muscles to activate a weak one. The longest I have gone is for 30 minutes (as of April 3). This has also helped me with my stability! For the first time since January 2016, I have been able to stand for a whole shower, instead of needing a shower bench to sit on part way (or the whole way) through.

We have hired help at home (my caretaker/nanny) that helps me take care of my little girl, as I still can’t transfer her well or really walk with her yet. Whoever is there is also my hands and feet, as I still get tired pretty easily by running around or lifting things. And I call it “supervision” of me to make sure I don’t do something I probably shouldn’t be doing. They’ve been with me since Lydia was three weeks old, and in that time, I have better learned to ask for help when I need it. (Um, Lydia is now seven months old. SEVEN! Next thing I know, she’ll be off to school!? Lol.) Amanda, the gal who comes to our house to help me out that’s closest to my age, has become a dear friend of mine. I guess that longing for a friend to just sit and have coffee with I’ve had for years has finally been fulfilled!

So, I’m making a ton of progress. And, we just found out that after more than a MONTH, the only MS med that has ever really worked for me has FINALLY been cleared by my new insurance company, so I can start taking that again! I can’t even imagine my improvements after that starts! But don’t worry, I’ll keep ya’ll updated. 😀

Hugs, everyone! (Even if I don’t know you, I’m gonna send you a hug. I like hugs, and I’m excited about this stuff.)

Anna

Walker, Kentucky Mom

You know, instead of Walker Texas Ranger?

Cane. Walker. Wheelchair. All of these assistive devices feel like defeat to the one using them. If you have a loved one putting up a fight, this is probably why. So, when I went to see my doctors at the Mayo Clinic in Minnesota last week, I brought this up. One of them, Dr. C., watched me walk without hanging on to anything. Then he had me walk while touching the wall. While holding on to his belt loop. While walking with a walker. He told me that the level of concentration in my eyes went down considerably when I had assistance. So, I won’t look at the walker as if I’ve given up. One wouldn’t really look at me and think, “Oh. She’s given up. How sad.” I’ve already decorated my walker with streamers. And, as the streamers are getting old and tattered, I’m having my grandma Marlene make me some cloth covers to go on the front. I’m going to embrace it, because it helps me considerably. And a wheelchair. My goal now is to replace the chunky wheelchair in the back of our car currently with a—as Dr. R put it—“sexy” chair. This “sexy” chair that I have my eye on is light weight, sized to me, and the metal part of it can be something other than boring-black. The whole idea behind embracing a chair is so that my life is not limited. No, I can’t go to the mall with you, because I can’t do that much walking. No, a museum is out of the question, because you don’t have an opportunity to sit at all. So, I will embrace these more-improved-than-before devices that will help me to live a normal life. And yes, we can be sure that when I get a chair that is not rented, I will TOTALLY make it mine.

So, if you have a loved one resisting assistive devices, help them make it theirs. Make it fun! Remind them of how these things can help them live a more normal life (but what is “normal,” anyway? The psychological question I’ve been asking myself since high school). Not being able to get places is debilitating. Riding in a chair or walking with a walker and then sitting down? One has so much more energy than trying to walk it by themselves!

And to all my friends and family: I will not feel “less than” simply because I use assistive devices. Tell me how cool it is decorated, and don’t stop your kids from climbing up on my walker. I’m okay with it, and I WILL let them go for a little ride. What do you mean it’s not fair that I’m their favorite because I have toys? Hehe.

Keep it real!

Anna

Sometimes, MS Just Stinks

When I was diagnosed with MS, I think every single neurologist I saw warned me about pregnancy. Mind you, I was 13 years old! Then, before Doug and I were married, my neuro talked through what pregnancy would be like with both of us. I would have to go off of the only MS medicine that has ever worked for me, let it get out of my system, and then try and get pregnant. Doug and I had planned carefully when we should move forth with a family, knowing that God held it all in his hands.

My last dose of Tysabri was taken in September. It would take three months for it to get out of my system, and it would be completely out by December. Mind you, my body has not been without medicine since 2006. But as I usually do, I push through all the MS-stuff that gets in my way. We didn’t really notice anything until the middle or the end of December. We found out weeks later that I had actually gotten pregnant by then! Yay!

I started a full-blown relapse about the beginning of January. Church ladies had been super helpful, but when my husband chose taking care of me above school, we knew something had to be done. Me, always in contact with my neuro, got on some steroids right away, but I was admitted into the hospital, where I could have constant care and not worry about silly falls. My parents were in Florida at a farmer’s conference thing, so the decision was made for me to go home with them the remaining of first trimester. Then, Doug could concentrate on school and not spend every spare moment worried about me, and I could have some more constant care by those who were there when the whole MS thing started.

Since I’ve been home, I got on another three-days of steroids, have actually seen my neuro at the Mayo Clinic, and saw my baby on an ultrasound! Each day I get stronger. You know, until the days I realized just how much I’d pushed myself the previous day. Then it’s back in a wheelchair and resting so that I can accidently push myself on another day. Tomorrow, I head back to the Mayo Clinic to see PT and OT. THEY will decide when I can head back, in a way. Can I take care of myself? Can I stand and not fall? Can I WALK and not fall?

It KILLS me to have to be here, waiting to get better. I’ve decided to DO something about it, though. I want to hold and to play with my baby when he or she is born. I have been putting off PT orders since I was diagnosed back in middle school. But now I have a reason to want to keep up doing what I still can. Daily stretching? Daily exercise? I‘ve been down this road before. What I do today may not be noticed by my body for days or even weeks. I may wear myself out too far and knock me down for a couple days. But Baby M.

Thank you all for the prayers that have been sent up on my behalf. Keep them coming! MS is nasty, and all my frustration toward the situation is aimed at that. But I AM getting better! Even on weak days, I notice things I can do that I hadn’t been able to do before. Stay well, my friends! I will write again sooner than later! ❤

Anna

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My Battle Plan against Depression, first steps

Sword Spiritual Warfare2 Corinthians 1:8-10: 8 We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. 9 Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. 10 He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us.

I have been looking into spiritual warfare a lot lately. I have also been reflecting on my inward struggles and have decided to draw up a battle plan. My biggest inward struggle is against the depression and anxiety that try to control the rest of me. It has been since I can remember. I am at a much better place than I once was. The biggest current struggle now, is that the serotonin-deprived parts of my brain are trying to convince me that it’s not worth exercising or stretching every day. It’ll tire me out and prevent me from getting anything else done today. It might get better for a little while, but then one slip up, and I’ll be right back where I started. It’s almost Thanksgiving, when we’ll be flying back to Minnesota. Car rides and flights always set me back. Why bother? This is a lie I have struggled with for FAR too long.

This spiritual battle wages because we are given the power to overcome sin’s grasps when we accept Jesus Christ as our Lord and Savior. There is no battle when there is no opposing side. The Spirit of God brings us to life spiritually, but we still live in these bodies of flesh that still have a sinful nature. Thus, the battles rages—but victory is assured because we are in Christ! (Matthew 26:41; Romans 7:14-20; Galatians 6:16-17)

In Genesis 4, Cain gets angry that God didn’t look upon him and his sacrifices with favor as God did with his brother, Abel. God addresses it in verses 6 and 7: “6 Then the Lord said to Cain, ‘Why are you angry? Why is your face downcast? 7 If you do what is right, will you not be accepted? But if you do not do what is right, sin is crouching at your door; it desires to have you, but you must rule over it.’” God tells us to fight against sinful feelings! These feelings of depression and anxiety? THEY DON’T CONTROL ME!

Isaiah 53:4-5: “4 Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted. 5 But he was pierced for out transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.” Here, we discover that Jesus went to the cross for our body, soul, and spirit. His suffering was not just for our soul’s salvation, but the HEALING of our soul, as well! He brings us peace—because not only are our sins on that cross, but so are EMOTIONS, FEELINGS, and everything we can imagine! Frustrated? Nail it to the cross. Depressed? Nail it to the cross. Anxious? It’s on the cross!

I know these are a lot of scriptures, but these battle plans need more than just words of mine. You see, the word of God is the sword of the spirit. And with the faith that we receive by reading these verses of truth, we can extinguish the flaming arrows of the evil one (Ephesians 6:16-17). I shall continue.

The very first scripture I wrote was a time when Paul was depressed. So depressed that he despaired of life itself. In 1 Kings 19:3-4, we see Elijah when he is depressed. “3 Elijah was afraid and ran for his life. When he came to Beersheba in Judah, he left his servant there, 4 while he himself went a day’s journey into the wilderness. He came to a broom brush, sat down under it, and prayed he might die. ‘I have had enough, Lord,’ he said. ‘Take my life; I am no better than my ancestors.’” Here, we see Elijah in isolation. Depression THRIVES on isolation. Shame is in the driver’s seat when depression shows up. “I am no better than my ancestors who died in the desert before seeing the Promised Land. Kill me, too!” That sounds an awful lot like what I said earlier in this post: It’s not worth exercising. I’ll just go backwards, anyway. I’ll just have this disability forever. Ahh!

How do I fight this? I need to focus on God changing ME instead of what’s around me. In Matthew 14, Jesus is walking on the water, and Peter asks to be called out, too. Picking up in verse 30: “But when Peter saw the wind, he was afraid and, beginning to sink, cried out, ‘Lord, save me!’ 31 Immediately Jesus reached out his hand and caught him. ‘You of little faith,’ he said, ‘why did you doubt?’ 32 And when they climbed into the boat, the wind died down.” Peter didn’t pray for the storm to stop, he prayed, “Lord, do a work in me! Reach down and rescue me!” – THEN, the storm stopped! I’m not going to wait until I get miraculously better or I “feel like” exercising or stretching. I can’t keep praying that I’ll “feel like” exercising and stretching more. I just need to DO IT. Because I know that when I take a step, God will be there to guide it. Peter walked on the water until he saw his circumstances and got scared. I’ve been scared too long.

I talked a lot about exercising and stretching for my MS in this post, which is definitely something I need to be doing. I have been dealing with a lot of other lies that this battle plan will help to eliminate. The first step of what I need to do is to straighten all these things out in my mind. Actions are the follow through of thoughts, and I need to start there. Instead of praying that I’ll get more work and that it will pick up, how about I start doing the work I have better? It all starts in my mind.

“…But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us” (2 Corinthians 1:9b-10).

Resources: “The Depression Struggle” sermon by Richard Holmes; “Understanding Spiritual Warfare” by Tonilee Adamson and Bobbye Brooks.

This Post by a warrior in Christ, Anna E. Meyer

I trust Jesus more than I worry

He looked straight into my eyes. Even though there was much motion going on around us, he never broke eye contact. All day I could feel him looking straight into my eyes. I would always look to him, as well. When I was distressed about what this MS will do to me in the future, he cupped my face in his hands. “I will help you,” he told me.

“Will you heal me?” I asked.

“I will be with you, and I will help you through everything. Trust me?” he asked.

“Yes, Lord,” I answered.

Time passes. The MS gets better, then it gets worse. Then it gets better again. Even though I worry, I hear the echo of Jesus’ whisper. “I’ve got this. Don’t worry.” Even though I catch myself worrying at times, my heart beats with my reply, “I trust you, God.”

More time passes. I graduate college. I get married. New worries arise. Again, I look up into the ever-loving eyes of my Savior. As before, there is motion in the background, but I’m not looking anywhere. Suddenly, Jesus’ face turns into Doug’s.

“I will be with you, and I will help you through it all,” Doug told me. And I know it’s true. Because I trust my Lord, and he’s the one who sent my husband to me.

“What if the MS does something terrible to me in the future? How am I going to be able to handle children someday?” My frantic voice raises. “I can’t even handle myself!”

Jesus talks, and it’s Doug’s voice that I hear. “Read this verse, Matthew 6:34.”

So I do. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Doug looks at me with the compassion in his eyes that I know comes from our Lord. “Don’t worry about tomorrow, Anna. There are a million and one tomorrows until you even have to think about taking care of kids. By time that comes, you won’t even be worrying about it! You will just do.”

I nod my head as I pick up my journal, so that Doug can’t hear my conversation with God. I confess to Him my worries. I tell Him my fears. And then I give everything to Him. I even thanked Him for the MS, because I have to rely on God for my everything.

“My power is made perfect in weakness,” God tells me through his word. Oh, how I know it’s true! When I am weak, my God is strong. I asked for help taking care of my body, and he sent me a doctor-husband who is as sold out for God as I am. When my body is weak, God shows his strength through me. How else could I write such words tonight? 😉

Be blessed, everyone!

Anna E. Meyer

Miscommunication

Miscommunication.  I have been learning a TON about this in many different areas in my life.  It’s just better to get rid of it.  Ask for prayer when you need prayer, and share the reasons/circumstances if necessary.  Ask for help (something God’s been teaching me lots since 2011, I think.)  Don’t just talk louder than the other person when you don’t like what they are saying.  Tell them you don’t like all that negativity or (insert whatever here), and why.

The miscommunication between my mind and my body is super-duper annoying.  Sometimes, I feel that if my body could keep up with my brain, I’d have to be a super-energetic child with no “off” switch. Other times, my body feels like it’s an old lady that should be in a nursing home but is really too stubborn for her own good. When my body keeps up with my brain, it can last like, and hour, tops. The miscommunication is not only the maturity or energy of either body or brain.  (I’m told that I have a “childlike” spirit….and yet, an “old soul.”  Figure that out.)  My body doesn’t tell my brain that it’s getting tired until after the fact.  I did physical therapy for, like, a month or two—twice a week!  It was awesome.  Until we realized that the PT was doing more harm than good.  I AM getting stronger, but I’m having a harder time than EVER with the body/brain communication thing.  Like last Monday.  The air wasn’t on in our house, and when I got up to walk around and do things, I was real weak.  Well, looking at the thermostat, it said 78 degrees.  In the HOUSE!  (Heat is an energy-sucker, too.)  So I turned the air on, and chillaxed for a while until I felt I had enough energy to do more chores.  Bleh.

I have also been working on the miscommunication that comes with two very different people being married and living together.  I don’t always tell Doug when I need help, or would like him to do something FOR me.  I would wear myself out until he notices.  (But, I AM getting better at telling him when I shouldn’t be doing things—it’s that bodily communication verbalizing and the whole pride thing of asking for help that I’ve been learning since I started this blog.)  And now, when Doug notices something needs to be cleaned or laundry needs to be done, he tells me instead of leaving the laundry room door open or setting out the broom (that I would put away because I thought he left it out after using it).  See?  We’re getting better at that.  We’re also getting better at telling each other our expectations of events or the rest of the day.  Communication is really cool.  I think what has also helped Doug and I be overcoming this stuff so quick is that we were long distance until we got married.  And I’m still not afraid to tell him my thoughts.

Doug and I have both (separately) been doing this Bible study through the YouVersion Bible App called “Lord, Hear Our Cry.”  It is all about prayer.  I have been realizing that there’s a lot of miscommunication on my part when it comes to prayer.  It’s okay to ask for things, but don’t get discouraged! Sometimes, when there is no answer, I assume it’s a “no.” Sometimes, that “no” may just be a “not now.” So don’t lose hope when God doesn’t answer us right away! It’s not miscommunication, really. It’s not that we’re not communicating. Maybe it’s because we’re not listening (receiving communication). Or the answer doesn’t come as soon as we want it to. That is our fault. God hasn’t answered me about healing me of MS. Maybe he won’t ever heal me or any of my family members who have also been diagnosed with this icky disease. But it doesn’t mean I’ll stop asking. This is one area that I feel like I know the least about. Why am I writing about it? Probably because God wants to tell me or one of you readers something.

Then Jesus told his disciples a parable to show them that they should always pray and not give up. He said: “In a certain town there was a judge who neither feared God nor cared what people thought. And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’ “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’” And the Lord said, “Listen to what the unjust judge says. And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?” (Luke 18:1-8, emphasis mine)

Now. Going back to previous topics in this post, don’t be a nagging spouse. But maybe if you tell your spouse something a few times, it’s okay. I feel like my body has been trying to learn the same lesson f-o-r-e-v-e-r. But persistence isn’t bad. Okay, like many of my posts, I have plunged into a topic and have since left it behind. Maybe it’s been too long since I’ve blogged. Maybe I’m having more miscommunication troubles with the world than I even thought. But, maybe not.

Be blessed, everyone!

Anna E. Meyer

Where in your life do you see miscommunication? What can you do about it?

The Spoon Theory

“The Spoon Theory” was thought up by an individual with Lupus. It always makes me sad to think about, because I don’t have to plan life as much as she does. She has to plan around her ability to button shirts in the morning or take extra time to look presentable if there are bruises on her arms or if her hair is falling out. You can view her original story here. Anyway, I was thinking about this as I read the article to Dr. Wile E. Coyote yesterday morning, and I wanted to create my own spoon theory. Anyone who is physically disabled or has an illness such as MS, fibromyalgia, Lupus, no matter how severe or not, can relate to the Spoon Theory.

spoonEach spoon represents energy that I have in my day. People who are not sick have an unlimited number of spoons, and even if they use them all up in a day, many are regained with a good night’s sleep. This analogy also works well with a gas tank, that once you run out, it takes another night’s sleep to gain it back. But for the sake of this post, I will stick to spoons.

I’ll begin this illustration by handing you, my reader, twelve spoons.

“Only 12?” You ask suspiciously. Yes. Only 12. Let us begin the day.

At 2, 4, and 7 am, we get up to go to the bathroom, so it is really hard to get up later. Luckily, I do not work in the morning, so if I don’t get up until 8:30 or 9, it’s okay. But I’m already behind. But I have 12 spoons. At 8:47am, I get out of bed. I get up, shuffle through the clothes in my closet, and get dressed. I go to the bathroom to take my medicine, brush my teeth, put on some makeup, and just in general be ready for the day. I then go and put a bowl and some cereal on the table, make a pot of coffee, and sit down to eat breakfast. Oops, there are only 11 spoons in our hands now. I was standing for much too long this morning. Unlike others who have central nervous system diseases, I don’t notice when a spoon is missing until I sit down and relax for a moment. You can see how this may be hard when I am go-go-go for too long. It also doesn’t help how stubborn I am at times.

After breakfast, I sit down with my Bible, journal, and cup of coffee to spend some quality time with Jesus. I love doing this daily for a few reasons: 1) It starts off my day with eternal thinking, which always puts me in a better mindset when it comes to other things. And 2) It doesn’t cost a spoon. : ) Then I go ahead and do some chores. I put some clothes in the wash, and I decide to get some supper started in the crock pot while I’m up and on my feet right now. If I went and sat back down now, I would not lose a spoon, but because I have all this energy and am motivated and already here, I shall continue—but I lost another spoon. After supper is started and clothes are put in the drier some 20 minutes later, I sit back down in my spot to rest and catch up on some writing or reading or something else on my computer. I have 10 spoons. I wanted to go shopping today, but I also have to work today. Shopping usually costs about 3 spoons, so I decide to go tomorrow. We’re out of milk, but Dr. Coyote will make eggs or something for breakfast for himself. Shoot, we’re out of eggs, too. “Well, then, I shouldn’t have done laundry and started supper if I wanted to do all those things today!” I say frustratedly to myself. I look at my schedule the rest of the day and plan it out.

I leave at 11am to go grocery shopping, and after I decide something, I’ll do it, even if I…shouldn’t. If I leave at 11, I know Dr. Coyote will be out of class in time to help me unload groceries (because I texted him as I left). But as I’m grocery shopping, I have to back track because I forgot that something on my list was in the second aisle, not the second-to-last like in my hometown. I skipped getting another thing that I really did forget on my list simply because I didn’t want to lose another spoon. I have 6 spoons when I get inside the hot car, and 5 spoons before the car cools down enough where I feel like I’m breathing fresh air and my body temp goes down.

As soon as I get home, I climb the stairs with eggs in my hand, put the eggs away, and sit down, exhausted, with 4 spoons left. I didn’t take as long as I thought I might, so it’s not even noon yet when I crash. I listen as Dr. Coyote gets home and heads right for the car, taking as many groceries in his hands each trip as he can. He then starts putting groceries away (because he is such a sweet guy like that). At 12:18, I get up to help with the last few things. I now have 5 spoons again, because that sitting break is exactly what I needed.

“What do you want for lunch?” I ask my husband. He has to leave for class again at 12:55, so that doesn’t leave us much time. Had I not went grocery shopping, I could have had lunch started, or even finished by now. I beat myself for it, but Dr. Coyote tells me to go sit down again, because he has an idea for lunch.

I join Dr. Coyote at the table as he finishes putting together salads on two different plates, thanking him for carrying up the groceries and for making lunch. We eat and visit. I still have 5 spoons left, but I think I can get another back before I need to go to work.

That is just the first half of my day, but I do have to plan a little more. These are some recent examples of some harder days I’ve had. But I learn from my mistakes. I haven’t always planned enough in my day, but I know what I can and cannot do. Unfortunately, I’ve had to learn a lot of that through trial-and-error, but I don’t make the same mistakes forever. I’m not always aware when I’ve just dropped a spoon or took one away until after it has happened. Sometimes, I take tomorrow’s spoons by mistake, and have a harder day tomorrow.

Dr. Wile E. Coyote is learning more about MS in me and MS in general, as well. I share with him little bits, but it wasn’t until I read him the original spoon theory article that he really understood. Reading articles from the MS Society, I do know that people who have MS use 5x more energy than people without. We have to think as we walk. I have a limp, and need to lift up my left leg, even when it feels s o   h e a v y at times.

In an article I read by Cathy Chester yesterday morning, I learned that there are a few different kinds of fatigue. There is primary MS fatigue, which Chester described as “waking up feeling somewhat energized, then feeling tired in the afternoon and less tired in the evening.”  There are also different forms of secondary MS fatigue. Nerve fiber fatigue is when you are doing something, like walking or playing the piano, and suddenly your legs or your fingers feel weak. Both of these happen to me personally. There is fatigue of walking with a disability, which I have already discussed. There is fatigue caused by disrupted sleep. I have experienced this, as well, as urinary problems and other digestive problems have woken me up in the night repeatedly. To learn more about MS fatigue and what you can do about it, read the article I read yesterday here. I have found that planning, as well as rest breaks, work for me. I have jobs where I can sit while I work, and I have family, friends, and an amazing husband who will all help me out when needed. They don’t even know when they step up and rescue me, but God knows what I need and makes sure I get it.

I felt like I should write this so that my friends and family can understand me better. I have told this story to one friend, who had tears in her eyes as I finished, because she simply hadn’t understood before. I don’t want people to always feel like they need to help me, because I am independent and can do plenty of things on my own. But when I can’t do everything that one might expect, this is why. I haven’t completely understood how to explain, nor have I wanted the sympathy that stories like this sometimes bring. But I have come to a place where I would just like you to understand.

I’d like to hear from you: If you have an illness, do you have to plan your day around your illness? What kinds of things do you do to help yourself? If you don’t have an illness, does the spoon theory help you understand other illnesses better?

With love,

Anna Meyer

My 10th Celebration of Life

On this day ten years ago….my mother and I traveled an hour away from my hometown to visit my neurologist to receive my official diagnosis. The results from the spinal tap had come back, and finally, Dr. Nelson would tell us for sure if I had a pinched nerve, MS, or a brain tumor. He had given all three of these as possibilities as to why my entire left side had stopped working normally, but his theory was that I most likely had MS. That is what we knew before we got to Wilmar, MN. I was CONVINCED that it was nothing but a pinched nerve, and for some unknown reason my name had been on the prayer list at church for the last few weeks.

On that day, ten years ago, I was officially diagnosed with Multiple Sclerosis. I was started on some medical steroids, and I was shown how to use the Autoject for my three-times-weekly medicine shots, just under the skin. (It would be another year before I gave myself those shots….and, of course, I was bribed—because what other way is there for a kid to be willing to do something unless they get something in return?)

Since my diagnosis, we have called the anniversary of that day my “celebration of life.” It is the day when I can look back on a year and see all the things I have been able to do, even though I have MS. On this ten-year anniversary of this life-altering diagnosis, I reflect on the things I have accomplished in my life!

1. I’ve been on all sorts of cool vacations and stuff.

Who cares if I had to rent a wheelchair to go Disneyworld? I went to Disneyworld! I’ve also rented wheelchairs at zoos, and even the Minnesota State Fair. Those places take a lot of walking, and I don’t quite have the energy to walk all that way. But I still got to experience it and enjoy my visits! Those places, by the way, have been the only ones I rented a wheelchair for. I can still walk! ….just not super far. I’ve been to the Wisconsin Dells and the Black Hills of South Dakota, just doing the tourist thing because I could. In high school, I went to a youth gathering with a church denomination, and had an AWESOME time with my cousin Jenni and my aunt Sheryl! In college, I went on TWO summer mission projects. Just because I have MS, doesn’t mean I can’t have fun! So I have to plan a little extra, and the south is typically a bad idea in the summer. I STILL LIVE LIFE.

2. In middle school, there were no cheerleaders, and I wanted to be one, so I petitioned and found a coach for middle school basketball cheerleaders!

The January after my diagnosis. I am second from the right, front row. You know, the one with the big smile?
The January after my diagnosis. I am second from the right, front row. You know, the one with the big smile?

We were moderately good. Our most difficult move was when one cheerleader stood on the thighs of two other cheerleaders, but we stayed safe. I wasn’t really into watching sports, but I did notice that when our middle school teams had cheerleaders, the whole “crowd” was pretty riled up. You know, for a middle school game. Smiley face. Of course, this cheerleading team kind of left the middle school when I did. I always wanted to be a cheerleader. Our high school had football cheerleading, but by that time, I just wanted to play in the pep band. (We see why I became a music major?)

I was also on the golf team for a few years before the walking became too much for me and I acknowledged that I wasn’t that great.  But it was fun!

3. I got my black belt!

Actually, I started Tae Kwon Do in 4th grade.  In 7th grade, I got my junior  black belt.  I was diagnosed with MS in 8th grade.  In 9th grade, I got my 2nd degree junior black belt.  After I turned 16, sophomore year, I got my first degree adult black belt.  And senior year, I got my second degree adult black belt!  I was involved in Tae Kwon Do for 8 years; 5 of those years after having MS.  I remember difficulty in my first tournament after being diagnosed, but then I just focused on what I COULD do instead of what I COULDN’T.  I taught and I was a referee as my level advanced.  I became inactive in TKD after I graduated high school, but I will always be a second degree black belt!

4. I finished high school AND college.

One of my college professors once told me that he had never seen such determination in a student. So I wasn’t the best. Who cares? I did as best I could. I was DETERMINED to finish well and I learned a ton while in those college years. I wrote a post about what MS has taught me over the last decade or so here.

5. I played a senior recital of percussion music.

At that time in my life, I had skill, because I was playing on these instruments all the time. I played a piece on the marimba, the timpani, some toms (drums), the vibraphone, and even flower pots! (Videos of all these can be seen on YouTube.) I loved that season in my life, when I could go from instrument to instrument in the percussion section in an empty band room and just PLAY.

6. I’ve had a “grown-up job” since I graduated.

Even before I graduated, I’ve been giving private lessons. According to some of my other music-major friends, I wasn’t charging enough, but still. As soon as I graduated, I got on the substitute teacher list for a few different school districts. And when I got to Kentucky, of course, I began working at a music store—giving lessons! And now I’ve started up this Mary Kay business! Before I was married, I paid my own rent, bought my own food, and loved when Mom and Dad came to Sioux Falls to take me grocery shopping. And now, I don’t get many visits from Mom and Dad (because I currently live, like, 20 hours away), but I still get care packages of coffee brands that aren’t sold in the south. (Thanks, mom!)

7. I’ve written, like, four novels.

Only one I’ve written is decent enough for me to want to publish it, but I do want to publish it! [2015 edit: you can find my first book here.] I also write shortstories and blog posts all the time. And other little things when I feel like it. I’ve kept a journal since I was diagnosed! And things have just kept moving from there. I don’t believe they will ever stop, either.

8. I wrote music for a class in college and directed an ensemble playing it in church one time.

So I maybe didn’t take into consideration that band instruments play better in flats than sharps. And that high school students can’t pick up music as fast as college students. But I was so proud of that piece! I even published my college friends and I playing the piece here on YouTube.

9. I GOT MARRIED!

My handsome groom and I at our wedding this last July.
My handsome groom and I at our wedding this last July.

Just this last summer, if you are keeping up with me at all on this blog. (I’ve kinda talked about it a lot….) Never did I ever think I would meet a man who saw ME past the MS that has been so apparent in my life. I have a limp, which is the most obvious symptom to the world and the first turn-off to anybody who sees that instead of me first (which is pretty much everybody). But Dr. Wile E. Coyote, while he notices my limp, only notices if it’s a bad day or a good day and helps me stretch sometimes. Or if he’s walking with me, and I pull him around. (He’s not as sturdy as my sisters when they’ve walked with me, hehe.) I love Dr. Coyote, my best friend, and he is what I need. But God knew that. And I am privileged to be starting this med school journey with him and trusting the Lord until graduation, and beyond! (Like, forever. Every. Minute.)

10. I have become stronger than I thought possible.

Physically, mentally, and emotionally. I have had to push past the limits of where I would want to quit because something is hard. Being diagnosed so young (at 13), I had to face many decisions and situations that most teens shouldn’t have to face. I thank the good Lord for my always-supportive family who helped me so much!

On this day in ten years, who knows what things I’ll accomplish that I’ll be able to remember? The thing about having MS is that though we have to plan a little more, sometimes sleep a little more, and maybe be careful of what activities we chose to partake in, we still live normal lives. I haven’t felt normal for years, but I wouldn’t have it any other way. I would love to wake up one day and the Lord tell me, “You’re cured!” But I know that when people see me walking with a limp, unphased, it brings God more glory.

Anna E Meyer

So I’ve talked about what I’ve learned and what I’ve done, MS wise. What else would you all like to know (MS-wise)?

How MS Changed My Life (For the Better)

I was diagnosed with Multiple Sclerosis when I was 13 years old. When I started the testing for everything (MRI, spinal tap, bloodwork, etc), I thought nothing of it. But then I was diagnosed with MS. Those two letters are pretty powerful. Mood swings are a symptom, and I always laugh when I’m taking a poll or something and somebody asks if mood swings got worse with my MS diagnosis. HELLO! I WAS IN PUBERTY! Hehe. But it did hit me pretty hard. I have posts about my diagnosis on this blog, so I’ll just skip to how it has changed my life.

1. It has forced me to rely on God and to trust him way more than I would have otherwise.

My faith has grown SO MUCH. I have very little control over this MS. I can do things to try and keep my body happy, like stretch or exercise, but I don’t have control over spasticity in my leg muscle or when my fingers will get tired or numb. Those things just happen. I have had to rely on the Lord to give me physical strength and energy when I have none. When I just want to crawl back into bed and skip the day, the Lord gives me exactly what I need. I’ve compared my MS with a thorn in my flesh before, but I don’t think of it that way anymore. Yes, it’s there, but it doesn’t always have to have an impact on every single thing that I do. Yes, I do take it into consideration when I’m asked to go for a walk and I reply, “Ehhhhhhh, I shouldn’t,” because I know what the next hours might feel like.
God is my physical, emotional, and spiritual strength when I have none. The MS has shown me I don’t always have physical strength. But, like the parables that Jesus was so good at telling, I have been able to relate it to my emotional and spiritual strength, as well. God is pretty sneaky like that.

2. It has allowed me to see what negativity can become, and weighed in my decision to be happy and positive all the time.

The MS community is split, sadly to say. About half of them cry, “Woe is me!” and have allowed the MS and depression to take over their lives. They are sick with a disease that is ruining their life. Nobody understands. Life sucks, let me drown in the sea of despair. The other half allows positivity to reverberate off of them, no matter what. These are the people that others who have never even heard of MS, look at and they say, “Now there is someone who I’d like to hang out with. Even though she’s in a wheelchair (or uses a cane or walks funny on her own or all these other things that MS can cause), she is a happy person. What an inspiration.”
I have been in the negativity boat. It is heavy, and doesn’t flow easily. It struggles to do everything, and there are many tears that cause the boat to start sinking in the water around it as it takes on water. But I have decided that while sometimes, pity-parties are what a person feels like they need, I don’t want to weigh the world down. I want to lift it up! (Pity parties DO affect others, whether we think they do or not!)

3. It has forced me to come out of my shell.

Kudos to my mother, who made me start talking to doctors and neurologists about what’s going on right away. Although I told her everything, I needed to learn to speak up for myself. I also needed to learn to defend myself, stand up for myself, and not let other people’s opinions be mine. I definitely did that. Now I’m the odd person who walks up to a stranger and says, “Hi. I don’t know you.” I will tell complete strangers about my MS and when they try to pity me, I will shrug and come up with a sassy comeback (that never gets out of my mouth, but in my head, it shuts them down). People can think what they want to think. But the people that know me realize that there is NOTHING to pity. I tell ya, some people!

4. It allowed me to see other people’s hearts first.

Most people, when they first meet me or see me walking on the street, see my limp. At least the people who look on the outside first. I had a bible study leader who once told me he’d never noticed my limp before. Because he looked at my heart. I like people’s hearts more than I like physical appearances. That’s what I see first. And you really ask me how I landed such a great guy? Hint: he saw my heart first, too. We actually fell for each others’ hearts before the rest of us. But, mmhmm. His heart is one sexy organ. And it’s MINE! 🙂

5. It has made me totally empathetic with illnesses and people who are not in the “norm.”

The people who society looks down upon and judges? I see them. I know what it’s like to be judged, and part of that feeling makes me feel a connection with that person, even if they don’t realize it’s there. I have no idea if it’s related or not, but I have a soft spot when working with kids, as well. So not all of them are at the same levels. I teach beginners and advanced students that range all ages. And it’s not always the older ones who are so advanced. Someone has a learning or other physical disability? We’ll work around it. Someone’s self-esteem is shaken? We’ll fix it. Too young? Too old? No such thing. I’m a friend to all, and I will teach anybody. MS? ALS? Autism? Cancer? Who cares. Let’s teach them something!
And I’m sorry for the people who are used to getting special treatment because of some condition. Who are seen by everyone as one way. Because I will see beyond. I believe this is what makes me a good teacher. And giving one-on-one lessons is my FAVORITE.

6. For some reason, my love of writing has been growing!

I don’t know if this is related to the MS or not, but I have been writing a lot more than otherwise. Nobody likes to listen to complaining, so I started writing about it in a journal. I wrote stories about it and overcame some of my own struggles through my characters. And now I write about all sorts of things. Maybe it’s just a coincidence that I can write from a seated position, because I get so tired on my feet all the time. I’ve always embraced the idea that, “I CAN do this now, so I WILL do this until I can’t.” That is why I happily finished my music ed degree and looked forward to being a teacher. Not because I’d be able to do it forever, because I don’t know the future. But because I liked it and I can do it NOW. Which leads me to

7. It has allowed me to value the NOW like never before.

Right now, I can type and write and walk and climb stairs and drive and work. I don’t know what my body will do tomorrow, or in 5 years. Maybe I won’t be able to do half those things. Maybe I’ll be able to do more than I can now. I have no control, and no idea. But right now, I can. That’s all that matters. Right now, I could WALK down the aisle to marry my love. Right now, I can support him as he’s in med school, because right now, that is where we’re at. Years from now, I don’t know where we’ll be living or what I’ll be doing. So right now, we are plugged in to a church. Right now, we are making a lot of close friends. Right now, we are involved in other people’s lives because right now, we may be at the same stages or at the same church or simply in the same neighborhood. Right NOW.

8. Since I was diagnosed, I’ve become an MS Activist.

When I was in middle school and high school, I was in the MS Walk and raised all kind of money for MS research. Since then I have become too busy for the walk (and I don’t have the same connections I did), but I educate as many people as I can about the disease. The ALS Ice Bucket Challenge raised awareness and millions of dollars for ALS research. What challenge does anybody have cooked up for MS? Because I am excited to jump on board!

These are a few of the things that came to my head as I was thinking about the MS I have. Dr. Wile E. Coyote is actually learning about the central nervous system and nerves and all sorts of things that he’s been able to connect to MS, and he understands it better in that medical way. With all his resources, he has also been able to see what is up with MS research and what researchers are looking into. Apparently, they are looking deep into genetics, because there is something related to that. But that’s not ALL. It is so interesting listening to Dr. Coyote talk about the stuff he’s learning. Of course, when he starts talking, using all scientific terms, I know he’s no longer talking to me and can tune him out. (He’s only been in school a few months and I’ve learned that!)

Do you or have MS? How has it changed your life? Do you know someone with MS? How has it changed YOUR life, watching them? Do you see changes in their life?

Anna E. Meyer