There Will Be Bad Days

Posted on by
2

Good days and bad days. I struggle with this saying even though it puts things into perspective. In my mind this is the kind of phrase said about my Grandmother with Alzheimer’s, not my Mom with MS. It is a phrase people use to speak about their elderly relatives, their aging grandparents, not my 59 year old Mom. But at the same time, it works. It is an easy way to sum up this life I am living with Mom’s MS. It is an easy phrase for me to focus on, so I don’t get frustrated by the turn of events that can occur in one day.

I was home visiting my parents this past weekend. Friday night when I arrived Mom was doing great. Her physical therapist Coach C was there and she was doing her exercises and in a good mood. On Saturday, Dad, Mom and I went to lunch and then Grandpa came over for pizza and to watch college football. Our college team won in a 4th quarter finish after playing horrible the entire time. It was an exciting and fun evening.

But, Sunday was different. From the moment Mom woke up Sunday she seemed off. She seemed to not be moving around very well. Very tired. Just “out of it.” We picked up lunch and took it to my Grandpa’s house to eat before I left town. She was very tired and wanted to lay down. She didn’t talk too much. It was just strange and tough and weird. I was thinking how did we go from yesterday’s great day to this barely 24 hours later.

The only explanation- good days and bad days. I don’t want to admit Mom has good days and bad days. To me it means everyday there is a chance it could be a bad day. I can’t assume it will be a good day. I also have to learn to deal with the bad days. Learn to react, not let them bother me,and not take them so personally. It all ties back to taking life “one day at a time.” By saying there are good days and bad days you are essentially making a commitment to taking life one day at a time. Because you don’t know if it will be a good day or a bad day. But I am selfish and I want all good days. I don’t want the possibility of bad days. I also don’t want to use the same phrase so often associated with people’s elderly relatives. I don’t like Mom being lumped into that category because people so often do it. But unfortunately for me, the bottom line is that’s what this was- it was a bad day.

I need to find a way to not only tell myself this to believe it – Mom had a bad day. It’s going to happen and it’s okay when it does. It’s not the end of the world, it’s just a bad day. There will be more good days just like there will be more bad days. Take it one day at a time.

Have you every struggled with the phrase “good days and bad days”? Do you believe it’s important to remember to keep things in perspective when dealing with a disease like MS? Do you find yourself prone to catastrophic thinking sometimes…where one bad day means a million more bad days? Are you as frustrated with me as I am that I can’t seem to just take life “one day at a time”?

A Scatterbrained Friday

Posted on by
2

I forgot to put on eyeliner this morning. I am not sure how exactly one does that, but I did.

I am also planning to leave straight after work to head home to visit Mom and Dad- and when I got to work I realized I had forgotten my make-up bag for the weekend.

Why do both of these instances involve make-up? I don’t know. I could dig and try to find some philosophical reason or I could just explain that I think I am on the brink of losing my mind.

So with that said, I don’t have too much else to say today. I feel a little scatterbrained so I felt like writing a scatterbrained post to reflect this. I also feel a bit like I am two people right now- on the outside I am the person who appears to have it all together, upbeat, life is going great…inside I am the opposite of every part of that. I told Mom that on the phone today. She said it will be good to come home and just “be” at home. She is probably right. Mom’s do have some magical way of making things better. I don’t know how, maybe they learn it in “Mom School” where I also believe every Mom becomes an expert in the official “Mom look” (you know, the look your Mom gives you that means you are in trouble but you are in public so she can’t address it right now). Hopefully a weekend at home helps knock some things back into perspective or at least just gives me a little break.

I apologize for this post that is clearly all over the place. I was racking my brain for something to write about but thought I’d just see what came out. Do you ever experience days where you feel all over the place and out of sorts? Do you think forgetfulness can be related to stress? Do you believe in my theory of “Mom School”? Hope you have a wonderful weekend!

Confused by Encouragement

Posted on by
Reply

I’ve always been encouraged and pushed to succeed. Not in an unhealthy way but in a normal, “you can do this” sort of way. I also have always responded to it. It had the desired effect on me. I push and continue to push myself to succeed. If I am afraid to do something I figure that means I really need to do it- as much as I don’t want to, I will force myself.

What is strange though is I am not sure where I got this from, this trait. Mom is one of the biggest people who has always pushed and encouraged me. She pushed me onto a plane to study abroad, she left my 18 year old crying self at my dorm room freshmen year of college, she moved me to another state for graduate school- she did all of these things because she knew I’d be okay and knew I needed to do them.

But the strange part is the same does not exist in the reverse where Mom is concerned. Mom does not operate this way. If we try to push her to do more where her MS is concerned, she gets frustrated. Most of the time it doesn’t end well. She doesn’t fight for things the same way she taught me to fight. But in the same way I am simply trying to instill in her the same ideals she has instilled in me. It leaves me confused. I don’t exactly understand how that works. I know she wants the best for me the same way I want the best for her- but when the role of mother and daughter switches into reverse and I become “the encourager” and she becomes “the encouragee”that gets lost in translation. Yet I know that in life the person who has always encouraged me and pushed me more than anyone is Mom- at the same time I know this baffles most people because this is the same Mom who struggles to push herself.

I don’t really know where I am headed with this but it’s an observation I’ve made and one I want to file away…I do believe all these observations will intertwine themselves into a life lesson that is forming. I am just not sure what it is yet.

Did your parents push or encourage you to try things you were scared of when you were younger? Have you experienced moments of trying to push or encourage your own parents but not getting the desired effects? Do you think paying attention to comparisons in our life can lead to many life lessons if we pay close enough attention?

Weathering The Storm

Posted on by
Reply

Fall. It is one of my favorite seasons. Right now it is a strange transition between warm and cool temperatures- a transition I am struggling with in my wardrobe as well. Dress for the morning when its 50 or dress for the afternoon when its 80. But I am not complaining- the weather is beautiful.

It makes me wonder how much weather can impact our mood. Mom does not do well with the heat of the summer. But the cooler weather brings with it a change in her spirit. Sister K picked me up at work and took me to lunch today. I had been inside of an office building all day but the time I spent outside really rejuvenated me. I felt like I had a renewed outlook on my day. This is also in large part thanks to time spent with Sister K.

I have been thinking a lot about the phrase “weathering the storm.” Our life is similar to the weather in that we have our own seasons and our own changes. Some are dark and gloomy and some are bright and beautiful. But like the weather that is always changing, our circumstances are always changing too. As much as we try to see the storm coming, we aren’t always accurate in our predictions. Sometimes it slams us and sometimes it misses us altogether. The thing to remember though is eventually it will pass. Eventually we will “weather the storm”- the storms of the skies and the storms of our lives.

Do you feel like your mood changes depending on the weather? Have you “weathered any storms” recently in your own life? Do you believe dark and gloomy is necessary because it makes us appreciate bright and beautiful that much more? How is the weather today where you live?

A Small, but Big Deed

Posted on by
Reply

As I mentioned before, Sister K went home last week. While she was there she helped Mom around the house with some various chores. One of these was mopping the floors.

Today when they were on the phone Mom told Sister K how she was in such a good mood knowing the floors were mopped whenever she walked into the kitchen. One of the things that gets her down is the lack of things she can do to straighten the house like mopping/sweeping the floor. When you have a walker it is next to impossible to balance while also using a tall stick to move around the floor.

This was a little thing that Sister K did but it made a really big difference to Mom. I believe having a calm outer environment at times can help contribute to calming our emotions and stresses. Mom’s inner emotions and stresses seem to always be amplified a bit more because of MS and this overwhelms us as well. I think we forget that something as simple as mopping the floor can help to calm the waters inside and help Mom’s outlook on her day to day life. Lesson learned- what may seem like a small deed to me can make a big difference to Mom.

Have you ever done something small for someone that ended up making a big impact on them? Or has the opposite occurred in you being the one that were impacted by something small? Do you feel like your outer environment can contribute to your stress and emotional leve?

Hope for a Minute

Posted on by
4

I am having a tough week. Well more like a tough couple of weeks. It puts things into perspective because there was a time when this had to do with Mom’s MS and today my tough time has nothing to do with Mom’s MS. I suppose there is a silver lining in this. I wish I could take a break from “finding the silver lining” but that’s life.

I was talking to Dad yesterday and said I just feel hopeless. I feel like I have hoped and been optimistic and I am worn out. He gave me some good advice. He said don’t consider hope to be something you have to do forever. Just focus on the next hour and say, for the next hour I am going to be hopeful. When that hour is up you can go back to being down or can try another hour. Take it a minute at a time, an hour at a time, a day at a time and work up to feeling hopeful all the time.

I have to admit it is sort of working. Right now I am in increments of minutes. I’ve made it to about 5/10 today before I have my negativity resurface. It’s not much, but it’s a start.

How do you stay hopeful/optimistic when life seems to be leading you any way except positively? Have you ever tried to incorporate changes into your life on a smaller level to combat being overwhelmed? What is a positive escape when you need a “life break”? This is your weekly reminder- Dancing With The Stars is tonight! Let’s go Team Lachey- get out the reality tv vote tonight so he can live to see another week of dancing!

Lunch Time is Our Time

Posted on by
Reply

Sister K told me something today: “Mom gets so excited when you call her on your lunch break. When I was home at 12:00 and the phone rang she would exclaim oh it’s time for “lunchtime chat!”

I think I mentioned before “lunchtime chats” are something Mom and I started calling my lunch break a few years ago when I started my first job. I was bored and lonely so I would call her on my lunch hour and keep her on the phone while we ran errands together, walked around or sometimes literally ate my lunch.

But now it has kind of become our thing. It is our time. Sometimes the conversations are long and sometimes they are short. Sometimes they are deep and sometimes they are light. But pretty much everyday we talk around 12pm. It’s now a way for me to check in with Mom to see how things are going and see if she’s having a good day or bad day.

I think we all have things like this we do in our lives. Little things that seem little to us but are a big deal to someone else. To me these phone calls are just little things. They are something I started doing because I was bored at lunch and wanted someone to talk to, but they have become much more than that…they have become my time with Mom. They give her something to look forward to knowing everyday around lunchtime, the phone is going to ring and it’s going to be me. Sometimes we laugh, sometimes we argue, but regardless it’s time with Mom and it helps me to focus on her as Mom and not Mom with MS.

Is there anything small you started with others in your life that has become something much bigger? Do you like talking on the phone or prefer email/text communication? Hope you have a great weekend!

Mom’s Cheerleaders

Posted on by
Reply

As I mentioned, Sister K has been home this week staying with Mom. Last night Mom’s physical therapist Coach C came over to work with her. Between the two of them they will use any excuse to turn something into a party; and, since Sister K was in town, she and Mom threw a mini one with the three of them. They made chi-chis, Mom’s favorite Hawaiian drink, and ordered Papa John’s pizza. Sister K texted me to ask: how do I get Mom to do her exercises even though we’re having party time. I said: well you’re just going to have to channel your inner “responsible big sister (me)” and do it. Coach C ended up taking the responsibility and got Mom on her bike even though she didn’t want to do it.

But I love this scene and the atmosphere because it is a way we are turning these seemingly tough moments and situations into fun. We are blending physical therapy with a party. We are blending MS and who we are as a family. It is another way we are creating our new normal.

We have also learned that the more we make these things uplifting and fun as opposed to depressing and focused on MS, the more positive Mom’s feelings on the situation are. We are in many ways her cheerleaders and have realized the responsibility that has been placed on us to help Mom…Keep her spirits up when we can, keep things positive, and keep things fun. I am not saying we are perfect- I know Sister K and I have snapped more times than we’d like, but last night I’d say she got it right.

How do you adapt to tough changes and keep things positive at the same time? Do you ever feel like you are the cheerleader for someone during tough times or have someone in your life who is your cheerleader? Have you ever tried a chi-chi?

Man’s Best Friend

Posted on by
4

When I was little we had a cat. It was a stray cat who we found in our backyard living under our deck and ended up adopting. Katie Cat was my best friend in the world and she was with us from when I was about 6 years old to 20 years old.

During that time period though we also adopted a dachshund named Lucy. Sister K really wanted a dog and a family we knew wasn’t able to care for their dachshund anymore. Then the Spring after Katie Cat passed away, Sister K wanted to get her best friend a dog for her birthday. Mom had spoken with the parents, they said it was fine and she went to the shelter to adopt a puppy. They gave it to Sister K’s best friend and 2 days later the parents returned with the dog saying their daughter was allergic. We don’t totally believe that but at the same time we didn’t know what else to do, so Daisy became part of the family too. And we became the owners of two dogs. We had gone from a family with one cat to a family of dogs. I find this funny because most people are either always cat people or always dog people, but we experienced this strange evolution to where we are today.

At the time though, I didn’t realize the intricate ways these two dogs would become such an important part of our lives. Mom didn’t have MS yet and we had no idea the diagnosis would be coming many years later. But now she does. She has MS and we still have these two dogs. Daisy and Lucy have become her companions in a house that could be sad and depressing since she spends most days there. In a way they keep her active and accountable requiring her to get up and let them outside, feed them or play ball with them. They keep her spirits up, make her laugh and in many ways I believe they look after her too.

When Mom had her relapse in May and was sick at home prior to it, they laid on the bed with her and did not want to leave. I believe they sensed something was wrong. And on most days they stay with her, following her around the house wherever she goes. Especially our dachshund Lucy. She walks directly in front of Mom wherever she goes. She also pauses to wait for Mom to catch up with her walker before walking further. We fondly refer to this as “the parade” at our house and refer to Lucy as the Grand Marshal.

It’s amazing how these four legged animals came into our lives expected and unexpectedly, yet I could not imagine life without them. I know I can never thank them for the companionship and important role they provide in Mom’s life, but I hope somehow they know this. They are more than pets to us- they are members of the family.

Do you have pets? Have they developed personalities making them a member of the family too? Do you believe pets have a way of knowing when things are wrong with their owners? Are you a dog person, cat person or other kind of animal person?

Hello, This is My Life.

Posted on by
4

Sister K is between finishing grad school and starting her new job in October, so she is home this week. Dad had to go out of town on business and asked her to come in to help Mom out. This means I am spending the week left out of our mother/daughter trio and feeling jealous..bitter..and jealous.

But to make up for it Sister K has been snapping random iPhone pictures of Mom, updates on what they are doing, and funny comments that only she and I would understand. Sister K has a unique ability to roll with the punches in all of this. I think she does it better than me at times. Like today when Mom had finally gotten ready to go and had lunch, she then decided she needed to go lay down to rest…when Sister K texted me this I was thinking what??? Sister K just decided fine, I am going to set up my new iPad. But that’s what being part of a family with MS is in a way. It is rolling with the punches. We can have a perfectly scheduled day, but it hardly ever works out the way we have it planned. We never leave when we think we are going to, it takes us forever to get out the door, by the time we get somewhere we are usually cutting our plans in half because we have run out of time, and we have to find ways to combine all of these events into a one stop to minimize the number of times in and out of the car.

All of this is something that takes a lot of getting used to. It takes the ability to disown your plans and just own how off track your day is going to turn out. For someone who loves plans like me, this is not easy at all. Lately though when things start to go off course or off schedule I am learning to just stop and think: “Hello, this is my life.” And try to laugh.

Do you like making plans or are you more go with the flow? Do you think you can train yourself to be better at one or the other? Do you ever have moments of taking a step back and laughing thinking “Hello, this is my life”? Did you watch Dancing With The Stars last night? Expect me to be talking about it all season. I am apologizing in advance to my readers.