Tag Archives: Multiple Sclerosis

Not Crossing The Line

Posted on by
2

It’s been a bit of a tough week. Thoughts in my head. Words being spoken. Concerns being raised. Its all had me thinking a lot. Thinking about my relationship with Mom. She is still Mom and I don’t want to treat her any differently. I don’t want to give her a free pass when we argue because she has MS and I don’t want to just give in to things because she has MS. At the same time I don’t want to seem like a heartless daughter who doesnt empathize with what she is going through. That’s the part where it gets tough. At what point does the line get drawn. At what point does an argument go from a simple mother/daughter one to a more complicated mother/daughter argument. The kind where if I am not careful I could really hurt Mom’s feelings and become insensitive to the changes going on with her. Changes that I need to learn to accept instead of causing my frustration with them to add one more thing to her plate to be down about. The kind of argument where you forget what the issue is because you are both trying to make a point. I think I am in the midst of walking that line right now.

I am far from perfect. My family is far from perfect. And adding MS to our lives has complicated our family dynamic in ways I can’t even fully articulate. It has also complicated my relationship with Mom. Mom and I had an argument Tuesday. Tuesday was also the day my phone decided to die. I then didn’t talk to her Wednesday and Thursday. Part of that was caused by legitimately being busy but I also knew I could’ve made the time to call if I wanted. I didn’t feel the motivation. I felt I needed a little time to myself to figure out my thoughts. I needed to chill out from our argument. If I got on the phone there was a good chance I wouldn’t be able to let it go.

Today I realized I needed to call Mom. I realized as I was walking to Starbucks today (for free Starbucks refreshers from 12-3) that calling Mom to say hi and catch up was a bigger deal than resolving our argument. I don’t really think our argument will be resolved for awhile. It involves lots of convoluted issues. She has some points, I have some points, some of it has to do with MS, some of it is just life but at the heart of it I don’t think there is going to be a big, grand resolution anytime soon. At the same time it is not such a big issue that it has earned the right to impact communicating with Mom. To impact a part of her life that she really depends on and if I had to admit to myself, I do too. In many ways communicating is one of the biggest things we have right now. I need to put aside my stubborn tendencies to make a point and just move forward.

So today I did. I called Mom. We both acted like nothing had happened. In reality she may not really realize I am still bothered by what happened. Or she could be using her own Mom intuition to realize she needs to not bring it up either. The point though is by not calling Mom today I believe I would’ve crossed the line. Crossed the line into hurting her with my lack of communication. I didn’t want to be that person. I didn’t want to be that daughter. So I took a deep breath and called Mom. Had a great conversation and felt better when I was done. Let the unresolved items stay unresolved. They may stay messy and unresolved. Focus on the moment. And in that moment today I was having a good conversation with Mom.

Do you ever realize sometimes you have to just leave issues unresolved and move forward? Do you believe there is a line in dealing with loved ones between a simple argument and crossing into something that hurts much more? Did anyone else participate in free Starbucks today? What flavor did you try? I got the lime refresher…it was good but a little too lime flavored for my taste. Kinda wish I tried the berry.

It’s A Rambling Kind of Day

Posted on by
2

My post yesterday sparked a few comments that I loved. Comments that have had my thoughts flying. Flying in all directions. Leading me to think sometimes you need to just ramble. 

To paraphrase the two comments that really stood out to me:

“The real surprise would be if MS did not change your Mom.”
“The changes from MS are happening faster than you can keep up with them.”

I read these and just paused for a minute. They were right. They were spot on. Then a flood of thoughts hit me. A flood of mixed up thoughts.

I thought to myself, duh. Why am I even questioning if Mom is changing. She is obviously changing. MS is a powerful disease. Do I really think this isn’t going to change her? But then this makes me sad. Sad that MS is winning in a way. Changing her in ways I don’t want her to change. Changing her spirit. Changing her attitude. Changes I can’t control and can’t do anything about. Mad because I can’t do anything about these changes. Furstrated because yet again I feel helpless. I take one step forward mentally and then a week later I am taking two steps back. I feel like this is a never ending cycle. Maybe it is. But it is a frustrating one. How am I supposed to deal with this when I can’t get a grasp on what is happening.

Which leads me to the 2nd comment, the changes are happening faster than I can keep up with. Faster because they aren’t all physical. For every physical change there is a mental one. Just as I get a grip on the phsyical, here comes the mental. In the same breath I am beginning to feel like I can deal with the physical changes better than the mental ones. Take away Mom’s ability to walk but don’t take away Mom. Her spirit. Her personality. Start messing with that and I begin to feel like a bigger part of me is being messed with.

And I don’t know how to handle it. I know very few people who can relate. When I think of the other people in my life who are my age, I think of no one who understands what this is like. At the same time there also aren’t many people I would share this part with. This is the not so pretty side. The side that isn’t full of positive and uplifting thoughts. This is the cold truth of what is going on. This is my life. In many ways at times I feel like it is my secret life. A part of MS that I don’t want to share with many people because it is personal. And sad. And saying it out loud to someone other than my immediately family makes it even more real. To watch people’s faces. Watch them struggle for words. I don’t want to go through it. In the end the only other person who gets it from the same perspective is Sister K. She’s the one I can say the dark thoughts to, tell the frustrating conversations without editing any details. It’s Sister K and Me navigating these changes. These changes that are coming faster than we can keep up with. And won’t seem to stop.     

Do you ever feel like sometimes you need to ramble? Do you ever feel like your thoughts are happening faster than you can keep up with? Thank you for your comments. Thankful for the support I have received here.

Unsuccessful Thoughts

Posted on by
10

Can MS change a person? I am really questioning this because I am wondering about my own Mom. I am seeing changes in her personality that to put it simply, I don’t understand. I feel like an imposter is slowly taking over as Mom. I can’t explain it really, it is difficult and convoluted and again to put it simply, a mess. But I am struggling. I am struggling because this is Mom- my mom. The woman who I have always had on a pedestal. Who is supposed to be invincible, who is supposed to always say the right thing, who is supposed to listen, who is supposed to be there. All of a sudden things are changing. I don’t know why and I don’t know what is causing them to change. Is it just the simple pain of growing up, I don’t think so. Am I asking for too much, again I don’t think so. But something is strained. I feel stressed about what that something is- I am trying to put my finger on it and struggling to do so. Maybe if I can figure it out I can figure out how to deal with it. Maybe there is no way to handle this. Maybe it’s just life. Maybe I am searching for an answer that doesn’t exist.  

But I continue to wonder, can MS change a person? What do you think? How do you handle changes in people?

Disconnected

Posted on by
Reply

It is a dark afternoon. My cell phone has died. Not in the sense that it has a dead battery but I believe it has actually died. I am sitting here just staring at its dark screen, its lifeless face and just cannot believe it. So sudden. I didn’t even see it coming. It just started acting crazy, I restarted it several times and then it just shut itself off for good.

But in a way with my phone powered down, I feel a bit powered down. I feel a bit disconnected from the world. This makes me a little uneasy but also a little lonely. I know it’s sad and it makes me realize how much I rely on this contraption to connect me with the world. How much I have grown to depend on it. It’s lack of presence this afternoon is forcing me to sit quietly with my thoughts. No texting Husband or Sister K, no seeing the blinking red light to alert me to an email. Nothing.

But this feeling of being disconnected is also healthy. I think I do need to be disconnected every once in awhile. Not just from my phone but from the outside world. I need to figure out the kind of adult I want to be, how I want to process emotions and think how I want to handle things without relying on the advice and opinions of others. I need to spend time with me.

I think it is important to remember to take care of yourself, your own thoughts, your own emotions and to check in with them as you care for a loved one. It can very easily become all about them without remembering to be about you too. I will be a better daughter to Mom if I can take a step back from Mom’s MS, disconnect from the world and reconnect with me every once in awhile. Thanks to the death of my phone I am having that opportunity this afternoon.

Do you feel attached to your cell phone? Do you believe in taking time to disconnect and reconnect to improve yourself? Has your phone ever just died? Wish me luck as I head to the Sprint store after work.

Sometimes Patience isn’t a Virtue

Posted on by
Reply

“Patience is a virtue.” I don’t remember when I first learned this phrase but it is one that resurfaces continuously, especially during moments where I am indeed lacking patience. The hard part is distinguishing when the time is up for patience. When it’s time to start forcing an issue a little more. When it’s time to stop standing by and patiently waiting anymore.

This is pretty much my natural inclination all the time. To not be patient. To get issues solved immediately. To get problems resolved as soon as possible. But Mom’s MS continues to force me to be a little more patient. Emphasis on the little. Ultimately I can make suggestions to Mom all day, we all can, but it is her body and her health. But there is a line. A line we teeter on the edge of constantly. When we have been patient. When we have waited for Mom to make a certain decision, come to a certain realization and it has not happened. A line that separates not saying anything and saying something. From ignoring an issue to bringing it up. Crossing this line immediately makes you the bad guy. It makes you more aggressive no matter how calm you are. It leads to difficult conversations. Difficult moments. Moments that bring out a mixture of emotions. Emotions in Mom and emotions in us. Moments where you don’t know what to say. Moments where you are fighting to stay calm. Fighting to remain rational. Trying not to give in but at the same time going round and round in a conversation. A conversation that ultimately still has no resolution. Other than explaining to Mom how you feel, it goes nowhere. It does not lead to a resolution. It takes us right back to where we started. It’s as if we never crossed the line to begin with. No positive result from all the effort put in.

Another expectation broken: If you put forth the effort, you will achieve a positive response. Lesson learned: That’s not always the case.    

I do not feel that “patience is a virtue” but I also do not know what to feel. I feel a mixture of emotions. Anger being the biggest one. Anger at this situation. Frustration that Mom won’t listen to what we are saying. Confusion as to where we go from here.

*In case you can’t tell we are approaching a tough issue with Mom. One which I struggle to reveal on here because I do not want this to become a place where I just vent frustrations directed personally at Mom. But I will say this sums up how I feel about it. I hope you can gather what I am trying to say from my mess of feelings today.

How do you approach tough conversations with family members? Do you believe in just accepting they are never going to do what you want them to do? Do you believe in continuing to push an issue? Do you believe sometimes patience isn’t a virtue?

A Mental Holiday

Posted on by
1

I have tomorrow off. A mid-week break. Then it’s back to work on Thursday. It is kind of a strange feeling but also kind of nice at the same time. The mid-week holiday provides something to look forward to that is only 2 days away on a Monday instead of the usual 4 days away. At the same time it is also a bit random that we will all be back here after only one day off. But one day is one day and I’ll take it.

I also intend to use this holiday to take a mid-week-mental-break. Sister K and I have been talking a lot about Mom in the past 24 hours. A lot. This is in large part because Sister K has been home the past two days. We are very lucky to have each other because there are certain things about all of this that you can’t express to anyone else. Today on the phone she said, “Okay I can’t talk about Mom anymore.” It was a simple comment but at the same time it packed a lot of punch. It made me take a step back and realize how quickly this can become so consuming without even realizing it.

I am trying to figure out if it is going home that pushes Mom’s MS to the front of our mind or if it is just the nature of what is happening right now. I am reflecting a lot on that today and will probably continue to moving forward. It’s important because Sister K and I have to be careful that this doesn’t consume our lives. At the same time it is very consuming and a big part of our lives. I have to find a balance between the talking about it and pushing it to the back of my mind. 

So tomorrow I am taking a mid-week mental holiday from this. I am going to try to just live and focus on the present. Not focus on or worry about Mom’s MS. Try to give myself a bit of a break.

Wishing you a wonderful 4th of July. What are your plans? Husband and I will be having a lowkey relaxing holiday at home, but we think we may be able to see fireworks from our apartment balcony. Do you like fireworks?

I Really Am A Little Teapot

Posted on by
Reply

I am sure you know the popular song, “I’m a little teapot short and stout….” Well today I had a monumental revelation- my life is a teapot. And this teapot that is my life, it is operated at more than than half full on a daily basis from Mom’s MS alone. Consequently if something else major happens in my life it doesn’t just increase the level of tea in the teapot but it will typically reach or exceed its boiling point. 

In a way everyone’s lives are a teapot. But most people operate their teapot daily at 1/4 full. So as issues arise and their level of tea increases it will boil more but it takes a lot to make it boil over. The problem is that on a day where everything else in my life is operating at neutral, my teapot can still boil over very easily from Mom’s MS alone. If she should be having a bad day or there are new issues to deal with, this alone can make it rise. Add on top of that any issues that may come up for me personally and my teapot is boiling over.   

I am learning that MS is very much physical but the mental portion of it can be equally frustrating. And I struggle because MS is so foreign to me. How much is Mom about to do and how much is she truly not able to do? How much wears her out and makes her tired? Could she be trying harder or is she trying as hard as she can? Sister K is home and frustrated because Mom doesn’t want to go do anything. It makes me upset because we want to go do things with our Mom- simple as that. I have talked a lot about that on here recently but I feel like since Mom’s relapse that is one of the hardest areas we are dealing with and adjusting to right now. The conflicting emotions involved when Mom wants to stay home and we want to go do something with her. Take her to a store, take her to lunch, take her to a movie- simple things that we like to do with our Mom.

So, this brings me back to the teapot. The normal feelings that would occur from the lack of being able to do these things doesn’t just make Sister K and me sad, it sends us into frustration. We end up close to reaching our boiling point. We have our normal MS frustrations plus the new ones plus any small issues that are festering in our own lives. We are still growing up, our lives are not very settled and it’s hard. Sister K can be set off by something as simple as boy problems. I can be set off by a simple fight with Husband that I have no patience for- usually over something that really shouldn’t bother me much…have I mentioned I am still in the newlywed category, still trying to adjust to being married? Sister K and I know we aren’t acting rational but at the same time we are having trouble dealing with our emotions and thoughts because there are so many of them about so many different things. Sometimes I wish I could find someone to “tip me over and pour me out…”

Have you ever thought of your life as a teapot? How do you keep from boiling over and manage your stress? Did you love the song “I’m a Little Teapot” as much as I did when you were growing up?

The Art of Planning Ahead

Posted on by
Reply

I mentioned last week my family is planning a big cruise vacation for next summer. I knew the planning would be an interesting and somewhat challenging process- I just didn’t realize it would happen so soon.  There have been many decisions to be made- picking an itinerary, selecting the best cruise line, selecting accessible rooms, etc. We have never done a cruise so it is already a new experience but doing it with Mom’s MS adds another level of new to this as well.

We decided to work with a travel agent who is also a family friend. This has been a lifesaver already. She knows Mom’s situation personally so I know she is personally looking out for her. She has brought up issues and ideas that I had not thought of and is working through ways to solve them.

For instance we have to purchase insurance. An insurance policy that covers not only health insurance but a sort of protection since everything is prepaid in case we have to cancel our trip, lose luggage, miss our flights, etc. But you have to read the fine print. Some policies will only cover cancellations because of illness if they occurred 60 days prior and are not a pre-existing condition. If Mom has a flare up or relapse right before, some policies won’t cover it. Through our travel agent we have found a policy that meets these requirements but with a little extra cost. Check. We had to book rooms to reserve the cruise. The rooms need to not only accomodate Mom’s needs but also accomodate our family too. After searching around on the cruise layout I found an accessible room that connects to another standard room. There is only one option like this on board. The cruise line did not offer this up initially but after some extra work on my part I was able to find it. Check. Next up will be contacting a scooter assistance company. I was unaware but there are services that will drop off a scooter for Mom at the pier of the ship and pick it up at the end.

Because Mom’s MS is fairly new to our family we don’t have this down to a science like I am sure many other families do. It is new to us and requires a step back and lots of thought. I am enjoying the planning but want to make sure I have everything figured out the best way for Mom. It is definitely presenting some new challenges I hadn’t thought of- at the same time it is good for me to know that I can work through these challenges and successfully find a solution. It’s empowering and makes me feel like we have control over our fight with MS when I struggle so often feeling the other way around. 

There have been a couple moments when I have this small worried voice inside saying “Are we taking on too much? Is this worth it?” Then I fight it back down by saying yes, yes it is. This is not only important for Mom but it is important for our family. It is our way of not only saying but showing that our life and activities will not come to a halt because of MS.

To say this will be a great learning experience is an understatement but I am looking forward to sharing what I learn with all of you. I think that’s the best way to support each other- showing how we not only deal with the challenges of MS as a family but how we overcome them.

Do you ever feel overwhelmed by trying to not let MS prevent you from doing the things you and your loved ones enjoy? How do you fight through that and quiet the voice of worry inside? Thank you for reading and for your comments, they mean so much. I feel as though I have a virtual support team out there of people nodding along with my words.

Just Beat It

Posted on by
Reply

My family attended the Michael Jackson The Immortal World Tour by Cirque Du Soleil recently.

 Sister K and Mom sitting in the handicap accessible seats

We have always enjoyed going to shows but this was the first time we had done something like this with Mom’s MS the way it is now. Mom falls much more under the handicap accessible category than she used to and that presents new challenges for all of us. We purchased tickets in the handicap accessible seating for the first time. There were 2 tickets there and then 3 a few rows behind together. Dad dropped us off at the entrance to the venue. The handicap parking was full so he had to park elsewhere. Sister K and I got Mom inside and situated only to find the handicap bathroom stall was out of order. At this point it literally seemed like there was one thing after another. There was a moment when I saw some women in the bathroom line watching Sister K and I assist Mom into a normal stall- I was filled with envy. How easy for you to be here tonight. To walk in, find your seats and just relax and enjoy a fun-filled evening. Of course we had the exact same experience but just had a few obstacles getting to that point. I am disappointed I even had that thought at all. I have to stop comparing our situation to other people’s in moments like this. It isn’t healthy and it makes me more irrtated inside.   

Sister K sat with Mom during the performance. I sat in the other seats with Dad and Husband. It was easier in case Mom needed anything for Sister K to help. In the end it was a wonderful night that ended with us playing Michael Jackson songs the entire way home along with stopping for some drive through ice cream. Most importantly it was very uplifting to get Mom out of the house and go do something different with her.

But it is tough. It definitely takes some effort to remain active as a family with Mom’s MS. Nothing is easy anymore and nothing is done quickly anymore. You have to anticipate and expect the unexpected and know things will most likely not run smoothly. Plus we are new to the phrase handicap accessible. New to knowing what our rights are, what we can demand, etc. For instance when we realized the handicap stall was broken we were told we could use the family restroom. There was a line for it but later after waiting in the line we were told we have priority. Now we know. We also now understand how handicap accessible seats work at an arena. (They are great by the way. I was really impressed.) Everytime we do something like this we learn new tricks which make next time easier. It is hard though because it requires me to be very “go with the flow,” to adapt quickly to any changes and not let it bother me. I have said it over and over on here- I am a planner. “Go with the flow” is hard for me. These situations also require me to fight urges to get stressed or uneasy and keep things calm and steady for Mom. I know she watches closely for my reaction in certain situations. I think she knows I am the first to break if there is something to really be stressed about. I wear my emotions on my face. Sometimes that is a positive but sometimes it is a real negative.

My family has made a committment to not passing up opportunities like this because Mom has MS, even though it may be more difficult on us. These moments and memories are as important for Mom as they are for us. They change things up, they are a break from her same routine and they get us all out of our comfort zone. I think in many ways conquering nights like these teaches me a lesson too. Just because you may encounter one minor setback doesn’t mean a domino effect of setbacks is about to occur. It is teaching me to keep my cool, to think quickly and calmly under pressure and to just live in the moment. Focus on Mom and focus on the fun. I need to tell any axiety inside to Beat It.

How do you react when you are stressed? How do you handle minor setbacks when you are in a situation where you have little control? Do you believe it is important to not let MS control our lives and continue doing the activities we want to do? Have you seen the Michael Jackson Immortal Tour?

“I’ll Be Your Soldier” Gavin Degraw

Posted on by
Reply

Recently Sister K and I attended the Gavin Degraw and Colbie Caillat concert. It was at an outdoor venue where you sit on blankets enjoying food and drinks. These tickets were my birthday gift from Sister K and we had been anxiously awaiting this concert for awhile. It was a lot of fun and if you have a chance to attend wherever you live I highly recommend it.

Sister K on our blanket aka my freshmen year college dorm room comforter. Gotta love denim.

 Enjoying my margarita and listening to some tunes.

Gavin Degraw has a song on his new cd called “Soldier.” You can find the lyrics here. The song has a lot of meaning for anyone but Sister K and I have found it has a lot of meaning for us right now. It has to do with being there for someone but moreso than that it has to do with living up to the promise of being there. There is a line when he says that’s why it’s called the moment of truth.

Lately I have given some thought to the relationship Sister K and I have. We get asked by parents of girls how we became so close, what was the secret? The secret is I don’t know. We fight harder but love harder than anyone I know. We have always been this way. But looking at the way our life has gone up until this point I have to wonder if in many ways we were given each other as siblings and our relationship was being prepared for the greatest challenge we would face together, Mom’s MS. Being a child of someone with MS is not for the weak. It’s only reserved for the strongest of families and the strongest of children. No matter how old I get, I know that the spirit and heart of a family resides in its children. This also means that our family needs Sister K and Me now more than ever. To bring some spunk, to bring some laughter, to bring a distraction, to bring energy when Dad is spread too thin and Mom is feeling like she can’t do it. In many ways we have become our family’s “soldier.”

Sister K and I stood up and belted out these words at the concert. We have listened to this song repeatedly on the cd and practically have them memorized. It is a song that couldn’t have come along at a better time for us. In a sense this song is us.

Do you have any relationships where you are a “soldier” to someone else, whether it’s family or friends? Do you believe in the power of children no matter what age to add a particular energy to a family? Have you heard this song and listened to the lyrics? Do you like Gavin Degraw and Colbie Caillat?