Tag Archives: mind

A Mental Holiday

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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

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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?

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?

Can You Keep A Secret?

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Mom is coming home. Saturday to be exact. This is good. I am telling myself this is good. But it’s not without some worry. She is moving around but still having challenges getting in and out of bed. She isn’t moving around perfectly but better than she was. The doctors are hopeful if she continues on her phsyical therapy her walking will continue to improve. I listen to Dad say these things. I sound enthusiastic and optimistic. But secretly, I am nervous.

Dad was beginning to have issues taking care of Mom by himself at home before her relapse occurred. I guess I am worried she will return home and all the same problems will exist. My family will have just been put through the ringer for the past month yet will not see any major improvements. It will have been as if we went through all of this for nothing. These are my secret fears.

Dad, Sister K and I are already talking quietly about back up plans. For what we will do if the next week or two are a struggle. If Mom is not as self sufficient as she needs to be. If Dad can’t handle it all again. We may need to bring someone into our house to help. I know that is a reality but it is a tough one. It is also one that won’t happen overnight. It also isn’t something happening tomorrow. But it is sitting there, secretly in the back of my mind.

I feel like I am on a hamster wheel. A giant circle. I go round and round and everything goes back to the same thing. Take life one day at a time. A good friend of mine whose Mom passed away from ALS texted me yesterday and said “Day by day is the only way to do it.” I know deep down she is right.

But I struggle. How do I do it? Do I trick my mind? Shut off thoughts about the future. Shut off my plans. Live today and today only. It is tough. Really tough. I struggle with this everyday. I struggle because of another secret- I don’t really know how to live day by day.  

Have you heard of the expression taking life one day at a time? Do you put up a brave front but keep a list of secret worries? Is it just me or does anyone else not know how to take life one day at a time?

A Simple Break

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Meet Sister K.

Today Sister K and I met up for “lunch.” I say “lunch” because this consisted of meeting for TCBY yogurt and then walking down the street for a McDonalds iced tea. But regardless it lifted my spirits. It perked me up. It always does. I was making fun of her in her backpack with umbrella and water bottle. So I snapped a picture, using Sister K’s iPhone. My poor blackberry photo quality is limited.

A simple lunch break. A simple pleasure. Right now life is a little upside down. But we can meet for a moment and do something simple. Simple and cheap. Sitting on a bench. She asked if I’d talked to Dad. I asked if she’d talked to Mom. We compared notes. We seem to do a lot of this lately. We talk to each of our parents separately. Then we compare notes. We give each other updates. Did Mom sound happy? Did Dad sound overwhelmed? How did Mom say the doctor went? How did Dad say the doctor went?

I told her I called Dad this morning. I told her I had started calling him in the mornings to check on him on my way to work. Not really sure why, but I am wondering if it will become a habit. Sister K told me I am turning into our “family manager.” In some ways I feel like I am. I feel like all of our roles are changing a bit. I have noticed changes in Sister K, noticed changes in Dad, even noticed changes in Mom. There is a subtle and quiet evolution going on within the walls of our family. Each of us picking up new responsibilities, settling into shifted roles, figuring out how we can help, etc.

One new thing I started doing this week is trying to help Dad from far away. I know I can’t be there physically to help him with everything but it occurred to me I could make phone calls and help with little administrative tasks. I made a phone call about getting Mom’s doctor to request her medical records, I followed up on some airline flights, I got a question answered from our house title company, I even helped Sister K fill out her W-2 form for her new job so Dad didn’t have to worry about it. I think people may look at me like I am crazy or think my family is helpless. This is not the case at all. These things make me feel useful. They make me feel like I am doing something. Like I am helping in some way. If I can’t be there physically at least I can help take some things off Dad’s plate right now so he has less to worry about besides Mom. The moments I feel the most crazy in my mind are the moments when I feel absolutely helpless. I am learning the best way for me to deal with this is to feel useful- no matter how large or small the task may seem.

Do you struggle when you feel like there is nothing you can do to help in a situation? Do you ever assist your family in administrative tasks that may seem odd to others? Do you enjoy frozen yogurt as much as Sister K and me?

Warning: I Am Angry

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Since I returned Monday I have noticed something. I am a little more short fused. I am letting my negative thoughts consume my mind. My fights are escalating. I am losing my cool easier.

I am angry.

I am. I am admitting it right here for the first time to myself. It has occurred to me maybe I am going through the “Stages of Grief” again. As if I haven’t already gone through them or continue to go through them with Mom’s MS. That makes me angry too. The fact that I feel like just as I feel I have reached “Acceptance” I am back behind in one of the other stages again. I am angry.

Tuesday night Sister K and I got into a big fight. Sure we fight from time to time but typically they are silly and one of us can snap the other out of it pretty quickly. We are fighting experts. I have to say I have been fighting with her longer than anyone else in the world. That’s the beauty of having a sister who is also your best friend. We fight we make up. The cycle continues. But Tuesday night I felt differently. I felt full of a different kind of anger and it wasn’t even directed at Sister K. I was just mad. And she was mad too. 

Then come Wednesday night I got into a fight with Husband on the phone. We still haven’t received our tax return we filed in March which is becoming a source of stress in our lives. With him being in school and me supporting us this is probably the one time in our entire lives where we really need the money. After a frustrating morning on the phone with the IRS they said there had been an error processing it, it was corrected April 15 and now it was being processed. We should be receiving it in 4-6 weeks which would have been last week. Husband is really mad about this as he should be. I just figure we can’t do anything about it. Literally we can’t do anything. There is no one you complain to about the IRS and it is pointless anger. We are just going to have to live until we get it. But the point is, we got into a huge fight.

Then yesterday at work I received a note from someone asking about Mom that rubbed me the wrong way. Implying Mom wasn’t telling her the truth. I was so mad. Then I got mad about some of the people we have in our lives who are nowhere to be seen. Then last night I got mad at Husband again on the phone. He told me I can’t expect that much out of people when they probably aren’t even sure what they should do themselves. This made me mad. As you can see, I am angry. But I think I am misdirecting all of my anger. It’s all coming out at all the wrong people and issues. 

Why am I angry? Or who am I angry at? I don’t know. I am mad at MS. I am mad that Mom went into the hospital for a week, is in rehab now but I am not sure she is having any major improvements. I am mad because I am not sure whose fault that is- MS or Mom? I am mad that this is all consuming in our family. I am mad because other families don’t have these issues with their Mom. I am mad that Mom had to be the one to get this. I am mad because I don’t think Mom is strong enough mentally and enough of a fighter to handle this. I am mad because my family needs a break. I am mad because there is no cure. There is no end in sight to this. I am mad because I am trying to take things one day at a time and my mind won’t let me. I am mad that all of this is so hard on Dad. I am mad that Dad is having to go through all of this. I am mad at the unknown of all of this. I am mad that Mom really may not improve very much while she is at rehab. I am mad because I am trying so hard to be optimistic about Mom’s health and struggling badly right now. I am mad because the reality of home health care is a little scarier than just the idea of it. I am mad because I am scared Mom is changing. I am mad because I see my relationship with Mom changing. I am mad because I feel like MS is slowly taking away who she is, especially the part of her that makes her Mom. I am mad because I want it to all go away. 

I want it to all go away. And it won’t. It’s never going away. Things are never going back to the way they were. My acceptance of this will come. I know it will. But right now I am angry.

To put it bluntly, this sucks.

Baby Step Expectations

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I am having a fight in my mind. A fight with expectations. I have noticed in the past year that I have trouble with expectations. I expect people to treat me the way I would treat them. I expect life to go a certain way because I obeyed the rules. The problem is that is not how life works. And now I am having a fight with expectations for Mom’s health. In the simplest definition, I have been taught that when you are sick you go to the hospital. But you go there to get better. Once you are better you go home. That is an expectation I have of how a visit to the hospital is supposed to work.

This time though is different.  Mom was in the hospital. She did go there to get better.  But today I realized something. I think in some weird way I thought this hospital visit was going to cure her MS or make her greatly improve. Then that thought shifted. It became about the rehab facility. Mom will go to rehab for a few weeks and and she will be walking out of there greatly improved. The problem with these thoughts is that’s not how this is going to work.

I know Mom is going to improve. She is improving more and more everyday. But these are very little improvements. They are big improvements but little at the same time. She is walking around with her walker little by little. She is doing physical therapy and doing what she can do. From where I sat writing this a week ago, these are major improvements.

The problem though is in my mind. I think I almost feel disappointed. Then I feel awful admitting that I feel disappointed because I should feel thankful for how far we’ve come.  And I do feel thankful. But I still feel disappointed because I thought Mom would immediately just bounce back. Sure she’d still need her walker but she’d be moving much faster. She’d start physical therapy and her mobility would improve to where she was at the onset of the diease. She’d be “better.”

I am trying to remind myself that is not how this is going to work. This is not how MS works.  MS is not going to magically leave our lives. Mom is not going to be magically cured. Mom’s recovery is going to be a process filled with baby steps. Literally and figuratively. 

I feel a bit like I am on an emotional rollercoaster. Monday night driving back I was so happy and thankful that Mom was settled in a better place. But I think these were tricky thoughts to have. I think deep down I thought she’d be automatically recovering too. Today I am settling into the reality that this is not the case. It’s going to be a slow process. I am fighting my mind’s natural inclination to slip into a funk. I am consciously making myself remain hopful for the baby step improvements. I am telling myself if you take enough baby steps you will see a big step. This is yet another reminder that I need to be patient. Learn to take life one day at a time.

Do you have trouble taking life one day at at a time? Do you think it’s hard when you realize sometimes a visit to the hospital is not as simple as just being sick and getting better? Have you ever had trouble with expectations?

It’s Happening.

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Sister K is 25. She is an adult. She is not so little anymore. But to me, the big sister, she is still my little sister. But for the past day she has been Mom’s warrior at the hospital. I have had to come back to work, Dad had to go to DC for one night last night so Sister K has been holding down the hospital room with Mom. Managing what doctor’s are saying, making sure things are getting done, and being a bit out of her comfort zone at times. Last night though she stepped over the comfort zone line and the hospital better watch out because I don’t think she is going back. 

At about 1:30 am I woke up to the sound of a few text messages. Dad didn’t answer his cell phone so Sister K was seeking my advice.  

Sister K: In case you’re awake, have a question- Mom’s about to do MRI and we were just told it may take 3 hrs. She said I don’t need to go down and go in with her but I feel bad.

Dad usually goes in and sits with Mom, holding her hand during her MRIs. After a few quick minutes of texting about this she called me. She was irritated. A nurse had just come in to tell her that they may delay Mom’s MRI. The doctor had told Mom at 5pm he wanted her to have the MRI done and now at 1:30am it was finally her turn and they were wanting to delay it more. Ridiculous. I sat on the phone with her encouraging her. Telling her she could handle this. Be firm but they need to know Mom needs this MRI.  The rude nurse told her things like “the hospital is short staffed to get your Mom down there, why wasn’t this already done, etc.”  All good questions/issues except as Dad likes to say at times “that’s not my problem, fix it.”  I sat there on the phone as I heard the nurse in there. I couldn’t make out what she was saying but it was a rude, know it all voice. There was a scuttle of commotion. She made another comment about the MRI and that’s when Sister K showed this nurse she wasn’t just some little sister hanging out with her Mom.  Sister K very politely, yet very firmly said: “Well, it’s happening. Mom has lesions on her brain that the doctor wants to look at to determine the course of treatment and what is going on. This was ordered at 5pm today. It’s happening”

And they backed down.  I sat there on the phone with her. Encouraging her as she spoke. Reassuring her.  You’re doing great. Don’t second guess. Stay strong.  You’re doing really well. I’m so proud of you. As the big sister I was holding her hand as best as I could through that phone.

They got Mom situated and wheeled her down. We hung up the phone. She then called me back once Mom was in the MRI and she was heading back to the hospital room. By this time it was about 2:30am. I told her I was so proud of her. Thanks to her Mom was getting the MRI. She had really advocated for Mom when she needed it most. We talked for a few minutes and then both went to sleep.

Or at least I thought I could sleep. I layed there in bed just thinking about everything going on right now. My mind was racing with thoughts. Scared thoughts. Sad thoughts. I also just felt sorry for Mom and everything she is going through. I don’t think I slept much. There are too many unknowns right now and too many of them are scary. I am trying to manage my mind and not let it “go there.” But hearing the commotion of the hospital room, being on the phone while all this was going on, it made it real again. As if all of this isn’t real enough. It felt more real. Living in the real is scary right now. Life, it’s happening.