Tag Archives: Multiple Sclerosis

Learning to Fight the Fight

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Encouragement. I think it is one of the biggest pieces to helping Mom deal with MS. But it is also one of the biggest puzzle pieces too. What is the right way to encourage Mom? What do we say to keep her going? To keep her working hard? To in a sense keep her moving?

After Mom returned home from rehab, her doctor ordered 4 weeks of home healthcare coming out to our house. A physical therapist comes 3 days a week and a nurse also comes to check her blood pressure. It is a tedious process because people run late, times get changed or canceled, plus we have these 2 dogs at home that we have to corral while we have these people in our house working with Mom, not there to play with them. It is an ordeal for everyone. It is part of the reason Sister K and I went home last Friday so we could help out while the therapist was there.

But it’s been hard on Mom. She does her physical therapy and then ends up in pain in the evenings. She described it as a strong aching. It is a pain though that makes her want to quit. To quit physical therapy and just have Dad work with her. Dad has discussed that this is not an option while we have these services available. He is simply spread too thin to also be responsible for this. But the point is Mom has to keep moving. She wants to see faster and bigger results. When she doesn’t she wants to quit. It is hard for me to relate to because typically if you work out everyday you get stronger and stronger. She isn’t seeing this level of progress. She has improved greatly from where she was just 3 weeks ago but it is still small, baby step improvements.

All of this is tough though. Sister K and I were on the phone last night just thinking now we get to deal with this hurdle. It’s as if the hurdles with MS do not end. You just bounce from one to the next. I also don’t know what the right thing to say is, what does she need to hear. The strength she has to find has to come from within. We all know that. I wish she was naturally more of a fighter in these situations but she isn’t. It’s not her fault but she has never had to be and that’s not in her nature. But it makes it even harder when we hear about people who have MS and are fighting through it. Even though we also know MS and the people it affects cannot be compared. There is no comparison in them, no two cases are alike. But as a daughter it is hard to sit by and watch Mom not have the fighting spirit she needs. Sometimes it is there but sometimes it is not. And when it is not there, it is not fun.

So add motivational speaker to the many hats Sister K and I are wearing. Sometimes it is a positive conversation and sometimes it is a really tough one. All we can do is pick up and move forward. Each day is a new day. Some of these days will be easier on Mom than others. That’s just that way it is.

What keeps you fighting? What makes you feel encouraged? Do you believe a fighting spirit has to come from within or is it something that can be influenced by others? How do you encourage people in your life?

Friday Frustration

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I didn’t post on Friday. I tried. But I couldn’t figure out how to express how I felt. I was home with Sister K and Mom. Dad was out of town and asked if one of us could come in Thursday night to stay with Mom while he was gone. Well one of us quickly became both of us. We were quickly calling it a sleepover. Mom is okay by herself for periods of time but nighttime can be more challenging with getting back into bed. Plus it is just nice knowing someone is there with her in case she needs something.

But Friday I was feeling frustrated. Frustrated with Mom. I couldn’t figure out how to express it. I knew it wasn’t Mom’s fault. I knew it was just the nature of MS but Sister K and I were frustrated. We really wanted to take Mom shopping with us. We thought it would do her so much good to get her out of the house. We had strategized and devised a plan to make this as simple as possible. We would only go to one store, Loft. It is a big store, very comfortable for Mom to be in and plus they were having big sales. We thought we could take Mom in her wheelchair just to have a fun experience out of the house. Keep it simple. But when it came time for it on Friday Mom didn’t want to go.

It was tough. Mom was tired from her physical therapy. She was also nervous about getting out of the house without Dad around. It was hard on us because we had been looking forward to this. I know this is one of the tough parts of MS- how tired it makes Mom feel. But it’s just so frustrating. Sister K and I don’t know how much of this is that and how much is fear. We assume it is a combination of both. We respect that and we are trying really hard to go with the flow on all of this. Coming up with new activities, making our time around the house together more fun but the hard part is adapting to Mom not being around for the activities she has always done with us. In a way our time spent with Mom has always been “on the go.” She was a stay at home Mom so to say she was there for everything would be an understatement. It is hard not having her around for these simple things she has always done with us. People might think it is odd that at 28 and 25 we still want our Mom around to go shopping with, but we do. It’s harder when we know she is at home and we are out without her too. And it is hard watching MS take that away from us. It is hard dealing with it. We ended up inviting Papa over and we picked up pizza and salads. We are becoming more of a food to go instead of a restaurant family these days too. Another transition.

These may seem mundane things to be sad about missing out on but to Sister K and me they are tough. Shopping and restaurants. These are two things we have always really enjoyed doing with Mom and they are two things that are tough on Mom right now too. Simple activities I took for granted that have changed. I don’t want to sound selfish. I struggle with how to not come across that way. I am trying to go with the flow with these changes, but some moments are harder than others. Friday was one of those days.

How do you accept changes in what your family members are capable of doing compared to what they used to do? Do I need to truly embrace a “go with the flow” attitude in order to truly embrace these changes? How are you staying cool today? It is 100+ where I am.  

All Aboard

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I love to travel. I wish I had an unlimited amount of money AND an unlimited amount of vacation time to do it. Both are big hinderances to the actual travel part. My family enjoys taking vacations together. Even to this day, Sister K and I still share a hotel room with my parents. The only thing that altered this was the addition of Husband into the family. Now we get two rooms. I think Dad’s reasoning was always why would he pay for two rooms when we all fit into one. Sister K and I laugh about this when we hear about our friends whose parents don’t share rooms with them anymore. But my memories of all of us sharing one hotel room are some of my favorite vacation moments. Waking up Mom in the middle of the night for snoring, getting mad at Dad when he can’t do anything right surrounded by a small room of women, and the mountain of clothes Sister K and I accumulate on top of our luggage.

My family is talking about taking a big family vacation next summer. We haven’t taken one in awhile and next summer seems like an opportune time to do it. There is a catch though. We have more factors to consider now. We don’t allow Mom’s MS to inhibit our abilities on vacations but for the past few years we have been going to the same places that are familiar. The same city, the same hotel, the same environment. It limits the stress that can occur when you are dealing with the unknown of your surroundings. It lessens the need to stay two steps ahead at all times.

But, this time we are looking at something different. We are looking at a European cruise. We have never done a cruise but I think it could be very relaxing and simple for Mom. It’s difficult though because while we do not consider Mom to fall 100% into the handicap accessible category she does about 75% right now. This makes things tough because in our minds there are things she can do, but in reality with the way cruises and trips to various cities are designed it may not be the case. We also realistically just don’t know where she will be with her MS a year from now. Our hope is for improvement. The dream is to be walking without a walker. For now our immediate goal is to get her walking back on “Pinky” her 4 wheeled pink walker.

Dad told me I was going to be the one planning the vacation. I typically am the “planner” of my family but this time I have official responsibility. Normally I just self-appoint myself to this role. I have started doing some research. MS though adds another layer to the planning that I am not used to. Typically I would get online to explore and not think much about the landscape of places, how to get around or potential mobility issues. I am now finding myself asking these very questions. I have been told a cruise can be very relaxing, handicap accessible and Mom would most likely really enjoy it. I also know cruise passengers come in all shapes and sizes and they have assistance to accomodate those needs. I am sure it will all be fine. But these are just thoughts I am having. New concerns. New issues. New things I haven’t had to deal with before.

I have researched online about tips and advice on cruises and people with disabilities, specifically MS. There isn’t a ton out there from people who have gone through it. The information I have found doesn’t seem very relatable given the the unique aspects of MS.

So today I come to you for advice:
Do you have any experience vacationing with a disability or with someone who has a disability? Do you have any experience with this on cruises? Things to avoid, things to look for? And most importantly regardless of a disability, have you ever gone on a cruise- Do you have any recommendations?

This is Us

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6.16.12 This is a visual into Father’s Day. A day of relaxing and fun and enjoying our time together at home. In a way this is a visual of how we live with MS.

Mom sitting on the patio chatting with Sister K. Next to her you can see our spoiled dachsund Lucy floating on a raft as Dad swims by.

Dad, Papa and Me devising a dinner strategy. Dad pouring drinks, Papa grilling and Me bringing out our not so homemade side dishes. 

Here is a glimpse into my family. A glimpse into our spirit. A glimpse into where it comes from and the energy it gives us. Energy that keeps us laughing and keeps things fun. Our high maintence dachsund who enjoys floating on a raft. My blue mumu dress seen on me above. Dresses that Sister K and I have recently started wearing when we are hanging out at home. They add a festive element to whatever we may be doing regardless of it being Father’s Day. Mom’s mailbox- the name I have given the basket attached to Mom’s new walker “Walkie” because it carries things around for her. 

These things may seem dumb. They may not even be funny to anyone else but they symbolize the heart of my family. They are silly but important moments that keep us laughing and prevent us from taking life too seriously at times. Because at times the topic of MS is serious. It is so serious it can become overwhelming. It can bring us down. Instead we use these small things to keep us laughing, keep things light and keep our energy up. That walker in the picture above, a walker I was nervous about entering our family at one time- it may seem odd to say this but it is right at home in the middle of our family. Something we accept and look past with a smile. But I am proud because to me these pictures show we are still the same family regardless of MS- craziness and all.

Does your family do silly things to keep the energy positive? How have you adapted to changes in lifestyle because of MS? Do your dogs float on rafts?

A Grateful Tuesday

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I have had an outpouring of support on my blog today that I have not seen before. I am so thankful. I owe a lot of that to my regular readers out there. I also owe a lot of that to Patrick at Caregivingly Yours for the wonderful post he wrote about my blog today. A blog that has become more than a blog to me. A blog that has become a safe place to share my feelings, express the tough moments and remember the importance of the fun times.

When Mom was diagnosed with MS I headed straight to google. I am from the Millenial Generation meaning all of my problems and questions are supposed to be solved via google. But for the first time I couldn’t find what I wanted. I would google my mom has ms, help my mom has ms, what do I do my mom has MS, how do I cope with my mom’s MS and I could never find what I wanted. What did I want? I wanted to find someone I could relate to. I wanted to find someone who was similar to me. Someone who was close to their family, someone who understood the impacts of this disease on a family but also someone who was dealing with it. I wanted to know how they got through it? What did they do?  Had they ever felt the way I did? In a sense I wanted a manual. Because like the phrase at the top of my blog says, “life didn’t give me a manual when it gave my Mom MS.”  I would find resources for people with MS, people who had spouses with MS but nothing from children whose parents had MS. I was frustrated. If I did find something it was an angry message board post about how much they hated this disease and the awful impact it had on their family. I could relate to those feelings but there was nothing else. No sign of hope. No message of here’s how my family is dealing with it. It made me feel even more alone than I already did.

I didn’t want to feel alone anymore. I thought surely there has to be other people out there like me. People who are close to their family and just want someone else who can relate to what they are going through. The challenges and the tough moments but without forgetting about the laughs and the fun moments. My hope when I started this blog was to find a way to positively express my feelings. To show the tough moments but to also show the fun moments. To talk about how I was feeling or how things were going honestly and openly. Deep down I thought that maybe along the way I would meet someone who could relate or understand. I hoped that my blog would find its way to other people who may feel like I do. I think it may be doing that. I am so thankful. I sit here today feeling less alone with a big heart and a big thank you.

Thank you for reading and for coming back here to read again. Thank you for believing in my words enough to read past a first paragraph. Most importantly thank you for helping me to know I am not alone. Sister K and I are not alone and there are lot of other people going through the same feelings and emotions. I wish there was a bigger word to use but there isn’t. So I’ll say it again today: Thank you.

A Simple Celebration

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Father’s Day is Sunday. Sister K and I are heading home this weekend to celebrate Dad. And celebrate Dad we will. We think he deserves an extra special celebration this year and Sister K and I want to make sure it is just that. He selected the menu- tomorrow we will swim in the pool, Papa will grill steaks and we will have corn, cole slaw and potato salad. Will these dishes be homemade? Ha. Nope. We are not exactly big chefs in my family. We will then eat an ice cream cake from Baskin Robbins. Pralines ‘n Creme, vanilla cake and Happy Father’s Day on top. Sunday we’re going to take him out to breakfast. That’s the plan. It’s a simple plan. But given the state of our “un-simple” life, it is a much welcome simple plan.

I was thinking about it and realized this is the first time we will all be together at home since Mom’s relapse issues began. Sure we have all been home but Mom was sick, or in the hospital or rehab and we were staying with her. It marks a big moment for us. A moment of moving forward. A moment of accepting the changes, adjusting to them and moving forward. Dad referred to this stage the other day as “posititvely moving uphill.”

I credit Dad with the positive element of this. He has held us together through all of this. He kept us moving. He was Mom’s advocate. He has been in two places at once. He has worn the many hats of husband, father, caregiver and then boss for his job. He never faltered. He never seemed shaken. And that was a comfort. We instinctively know when things are a big deal by Dad’s reaction. We look to him to gauge the severity of the situation. He continues to be the rock for Sister K and me. We continue positively moving forward because we see Dad positively moving forward. Dad has always been the greatest father in every sense of the word but over the past few months, especially the past few weeks he held us up. I admire him for his strength and faith. And I want to thank him for it. Hoping this Father’s Day brings a day of celebrating him as a father the way he deserves for everything he has done for us.

Hoping your family has a wonderful Father’s Day. What are your plans this weekend? Do you think sometimes the simplest celebrations are often the most fun? Do you like ice cream cakes? Dad is obsessed. I prefer a cookie cake 🙂

Keepin’ It Light and Fluffy

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I love The Office. Husband and I are about 2 seasons behind. Our Office viewing goes something like this: we buy a season, we hole ourselves up at home to watch it on the weekends becoming somewhat addicted, we proceed to talk about it regularly as if these characters are our friends during this period and then we finish the season depressed until a new one comes out on dvd. We never watch it live. We then give the seasons to Mom and Dad who then catch up as well.  We are actually more behind than we used to be due to the mere fact of life. I plan to work on catching everyone up. As if this is a major life impacting goal to add to my to do list:
Catch everyone up on The Office: Check.

But it does make me think of the importance of tv shows and movies in brightening up my life sometimes. It is fun to sit around and quote movies at dinner or scenes from television shows we all love. It is like a big inside family joke. It gets everyone laughing. Instantly everyone’s head is transported to another time. They are with that character in their environment. Their head is filled with laughter thinking of it. Thus my head is filled with laughter and before I know it I am smiling and happy. As if happiness pulled a sneak attack on me.

It’s important to keep things light and fluffly sometimes. Conversations full of more laughter than content. Full of more television character quotes than news related stories. You know the moments where there isn’t much to say. The moments where looming in the background are the big overarching issues you are tired of talking about. In our case it is Mom’s MS. In these moments I have literally felt the tension lifted by just quoting a line from Wedding Crashers or a silly saying from Parent Trap. Stupid quotes are the bread and butter of my family. They bring the laughter which brings the smiles which brings the happiness. As insane as it may sound, these moments keep us sane.

Do you believe in fluffy conversation? Does your family enjoy quoting any particular tv shows or movies?  Does anyone love The Office dundies episodes as much as I do?        

Guilty.

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I feel a lot of guilt right now living out my day to day activities. Almost like my mind needs to be focused on Mom 24/7 or I am being a bad daughter. No it’s not a normal thought. No one has ever implied this needs to be the case. This is self imposed. But since I can’t physically be at home part of me feels like I need to mentally be focused on Mom. What specifically do I feel guilty about. The list is strange. The list may not make much sense to others. But here it is, my secret guilt list..

I feel guilty that I sit at home at night laying on the couch in my apartment watching The Bachelorette while Dad is the only one at home in the evenings helping Mom. Doing minor chores, small tasks, getting things for Mom, etc.

I feel guilty that I get to sleep through the night knowing Dad gets woken up by Mom to help her readjust or get out and back into bed.

I feel guilty that Dad sometimes has to grocery shop at 10pm at night becuase he has been so busy running a million different directions, many of which involve Mom. I feel guilty because I complain if I have to run any errands in the evening after work and Dad does nothing but run errands some nights after a long day of work.

I feel guilty I have time to read books when so often I hear Dad say how much he wishes he had free time to read a book. I feel guilty when I go to the gym. I feel guilty enjoying tiny privileges like these in my life.

I feel guilty I don’t live in the same city as my parents. I feel guilty because I could be so much help if I did. I feel guilty because I don’t think it will ever happen.

I feel guilty when I don’t tell the truth. When people ask how Mom is and I paint a prettier picture than reality.

I feel guilty. For these things and many more. Some like the above I am aware of. Some I think I am not so aware of. But I feel it. I feel the guilt. The fact that it is guilt I can’t do anything about is making me feel anxious. I think it may be the reason I have been having trouble falling asleep. Because at night, when the activities of the day have gone and I am laying in bed it’s just my thoughts and me. And these thoughts. This is where they go.

Do you ever feel guilty for things you obviously have no control over? Do you have a secret guilt list? On a lighter note, any fellow Bachelorette fans out there?

A New Normal

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Mom is home. Saturday Dad and I packed up Mom’s stuff from the rehab center and brought her home. This is good. I am not saying it isn’t. But it was also strange for me. Strange because of expectations I placed upon this event. The act of going home. All day Saturday I was having trouble shaking the feeling that I secretly wanted everything to immediately return to normal when we pulled into the garage. We’d all hop out of the car, walk in the house and things would return to normal.

Normal though is a funny word. I started thinking, what is my normal now? The old normal that I know is never returning. It is the one before Mom had MS. That is a normal I have grieved for and have accepted in a small way. I feel I accept it more and more every year. That normal is not coming back.

But the normal I am referring to now, I can’t help asking myself what is it?  The only answer I can come up with is before the relapse, but things weren’t perfect then either. Mom seemed to be declining in her abilities and struggling more over the past few months. So, what is the last date I can envision this normal I keep referring to? I don’t know. So then I struggle with that. Then I begin to feel sad. Then I begin to feel overwhelmed by my thoughts. Then I wish things would return to normal. Then the cycle continues.

I know the word “normal” is very loaded. Everyone has their own vision of normal. But right now I can’t even come up with the normal I am grieving or the normal that exists. Is that bad? Or is that part of living day to day? Reminding yourself there is no normal. Training my mind that each day is a new normal. The thought of that is kind of exhausting to me. But I guess that is part of living in the moment. Taking life one day at a time. You don’t look forward to a future normal. You don’t look back to your old normal. You live in today’s normal. Holding on to the good moments. Letting go of the bad moments. Trying to find a new normal.

Do you have trouble defining your normal? Do you believe each day may present it’s own new normal? Do you ever grieve for a past that is no more?

Finding My Armor

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A watermelon jolly rancher. This morning I was wandering around and stopped by the candy jar on someone’s desk and grabbed one. As I sat and enjoyed my jolly rancher I felt like I was transported back to childhood. To a simpler time. A time when jolly ranchers were life. Fighting with Sister K for all the red ones- cherry, watermelon, strawberry. Sometimes I enjoyed green apple. Always left the lemon or grape behind. Life was simple. The greatest worry I had when I held a bag of jolly ranchers was trying to get my favorite flavor out before Sister K took it.

This may seem like a silly post. It is. But I think it has a lesson to be learned. This morning I felt a wave of nostalgia. It struck me as interesting that a simple watermelon jolly rancher could conjure up so many memories. So many happy feelings. Bliss.

I am embarking on a journey to figure out how to take life one day at a time. This isn’t going to be easy. I already know it. I also already know I will fail. I will probably fail at in some way everyday. But today I feel a little successful. I am focused on the here and now. I am focused on my watermelon jolly rancher from this morning and with that comes a surge of happiness. A surge of happy feelings that I need to keep at the front of my mind. I need to use those as my armor to ward off the negative thoughts. Today jolly ranchers are my armor. Who knows what it may be tomorrow. Hopefully by striving to find something each day I can create my own suit of armor internally. A suit of armor filled with simple but strong thoughts.

What is your armor to help you ward off negative thoughts or worries? Do you have a piece of candy from your childhood that brings back a wave of nostalgia and good feelings? Does anyone else dislike lemon and grape flavored jolly ranchers?