This past summer Husband and I moved to a new city. In the midst of a new city, starting a new job, unpacking in a new apartment…I was a bit on new overload. One of the only things that was stable was that I could run. Then all of a sudden I started having this sharp pain in my knee as I ran- a pain that tells you something is wrong. I thought I’d torn my meniscus, Husband thought I had tendonitis and after getting to find an orthopedist in a new city with my new insurance, I was told I had IT Band Syndrome. What?
That was my response. Maybe you have heard of it but I didn’t even know I had an IT Band. I was prescribed Physical Therapy 2-3 times a week for 6 weeks. I was a bit on overload with all of these changes and now this was slowly sending me over the edge. Frustration. Defeat. Frustration. Defeat. The feelings rolled back and forth for about 4 weeks. I also didn’t believe I would ever be “fixed.” I didn’t know IT Band Syndrome made any sense. As someone who isn’t even that big of a runner but just does it as a work out, I felt extremely helpless.
Slowly though, my Physical Therapist got me running. He started with this fancy machine that “de-weights” you. Have you ever seen this? I put on these fancy biker shorts that zipped me into the top of this machine, then the machine fills with air and I am only running on 80% of my weight. It was crazy. I was describing it to my new boss and she demanded to see a picture of the “fat suit.” Since I have no shame, I figured I owed it to all of you to show you a picture too:
The reason I tell this story that has gone way off track is that there were many moments throughout this process where I wondered if this defeat and frustration is what Mom feels. I know she feels helpless. The task of just running without pain felt like a huge obstacle I would never overcome. I imagine that is how Mom feels about standing, about walking, about regaining her strength, about all of it. I have tried to remember that and tried to think how I can help her overcome it. Overcome the huge feelings of defeat, overcome what seems like this huge challenge that you will never overcome, basically overcome your thoughts- because in life and in MS it’s not just a battle of the body but also a battle of the mind. Where do you begin? I say it doesn’t matter, you just have to throw everything you’ve got at it, don’t think big picture but instead think small picture and begin anywhere.
Have you ever had a challenge that seems so big you don’t know where to begin? Can you relate to thoughts of being overwhelmed like you will never improve? What do you think of my anti-gravity running “fat suit?”
Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.
But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.
Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…
I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.
Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?
I am having a tough time blogging lately. I am pushing through it though because I love this blog. I love writing and having a place to come share my thoughts about everything going on with Mom. But my thoughts lately are cloudy and they are tough. I feel overwhelmed but the challenges being presented before my family. I feel overwhelmed about how much there is to this story that I cannot fix. I am trying to accept these complex thoughts but it is hard. It is hard because they are not easy to accept and I am not sure if accepting them is the right thing to do. I feel like a lot of the time I am thinking myself into circles about everything…only to realize nothing is resolved and the only way to cope is to mentally move on to something else.
To put it bluntly, I feel tired of MS. Tired of the impact it is having on my family and Mom. Tired of the way it is seeping its way into our dynamic and forcing us to accomodate and find new ways to get on balance. I feel like we’ll never figure it out. A big part of me wants to give up but a bigger part of me knows that isn’t what you do. To that part of me I tell myself- this is your family. These are your people. These people make up the biggest blessings in your life. You have to focus on them. You have to focus on the love you feel for these members of your family and focus on your relationships. You have to cherish the good moments and really cherish the memories of those moments. You have to remember the bond Mom has with you. A bond that can’t be broken by a disease. A bond that makes Mom the only person you want to call when you are upset and a bond that in the same way tells Mom just from your tone of “hello” over the phone that you are upset. She knows you. She knew you before anyone else knew you.
It’s not easy and in fact I think it is getting more complicated. Life is throwing bigger curve balls at us. I am worrying more about my parents. I feel older. I feel less like a kid. I guess that was going to happen eventually but I also feel alone in the process. I don’t have anyone who can share this except Sister K. No one else understands that I am now thinking for both Mom and me- Trying to manage our family, keep up with buying people presents, rsvp’ing for events, planning events, but all making it look like Mom is still doing it. I have always been a planner and always been organized with life tasks like this so it’s not that far of a stretch but it doesn’t make it easier. In many ways perhaps God was preparing me to assume this role my entire life…and now that time is here. Do I mind, no. But does it make things very real, yes.
I am not sure where I am heading with this as it seems to be a bit of a rambling post. But I wanted you to know where I am at these days. I am still around. I am still blogging. But some days I can’t bring myself to think about MS and do it…and some days all I want is to have a blank white screen to ramble about MS. But thanks for sticking with me and continuing to read as I charter through. Maybe this is all part of it. The ebbs and flows of life and the ebbs and flows of MS. Like my blog says, I don’t have a manual and I am just navigating it the best way I know how.
Do you ever feel like you need to ramble? Have you every struggled with blogging about tough things? Have you struggled with ups and downs with a family member and a disease?
Wishing you a Happy Valentine’s Day!
I know I am about to sound like a broken record. To be honest I feel like a broken record. I feel like this is the same thing I have blogged about a hundred times. The same issue my family has been dealing with and we continue to be dealing with..we aren’t going anywhere with it and pretty much staying in the same spot. You are probably just as frustrated hearing about it as I am talking about it. But I have to talk about it. I have to because that is what this blog is for me- it’s where I talk about Mom’s MS, the issues that result from it and sometimes it is the exact same issue but a new day.
Mom isn’t dealing with her MS.
Sister K called me this afternoon to tell me Dad was frustrated once more with Mom and her lack of initiative regarding her MS. Their new therapist suggested Mom look into juice drinks that you would make in the blender to help with her spasms. Dad thinks that turned Mom off and she told Dad she didn’t think their therapist needed to come every week. Dad listened and rescheduled for 2 weeks from now. The problem with this is Dad listened and is giving Mom what she wants.Dad had a frustrating night with Mom needing him periodically. We have talked to Dad about getting some outside help. Dad didn’t listen and hasn’t acted on this issue.
Dad then vented to Sister K about all of this. Dad did the same thing with me a few weeks ago. Sister K and I are a bit dumbfounded by the entire thing thinking we don’t know what else to say or do. We realize we are in a tricky spot. Dad doesn’t have much family to talk share this with so we are pretty much it. We don’t want to discourage him from talking to us but we are also at a loss for words or advice. We feel we have given all the advice or suggestions we can and he is the only one who can choose to act on them. It is also difficult because one week Dad is optimistic and a few weeks later he is the polar opposite. It puts Sister K and I on a bit of an emotional roller coaster, unsure of when it will stop.
Part of this may be that the relationship between Dad and Mom is husband and wife. It may be Dad admitting to himself what is happening just as much as Mom needs to admit what is happening to herself. I am not sure what needs to happen or what to even say. But I do know I am seeing the same themes consistently appearing lately. I realize this isn’t a more unique topic or unique situation. It is the same issue I have talked about many times before. But it is an issue that I need to talk about. So here I am. Trying to find a way to deal with this and realizing I still don’t have the answer or the power to do so.
Have you ever had an issue come up repeatedly in your own life that makes you feel like a broken record? Do you believe in the concept that when something gets bad enough people will change? Have you ever had a situation where a caretaker is having trouble but won’t seek the help they need? Do you even understand the phrase “broken record” because I am not sure I do?
Happy New Year blogging friends- after a bit of a holiday hiatus I am back!
I am also curious…Do you make New Year’s resolutions? I am not big on them. The main reason is because I feel like if you want to make a change in your life do it, don’t wait for a new year to do it. But with that being said, there are a few I am making this year just because I am feeling like the timing aligns well with some changes I want to make in my life.
I thought I’d share these too since I figure that if you are reading this blog you know me pretty well even if we’ve never met in person:
My Superficial Resolution:
1. Stop picking/biting finger nails. This has been a looming issue for me. I actually think I picked it up from Mom which is kind of comical. But as a reward for stopping I made an agreement with myself that I’d treat myself to a manicure.
My Carry over from Last Year Resolution:
2. Cherish the Moments. I have talked a lot about this on here and it was a central theme throughout my holidays. Really trying to be present and almost take a mental snapshot of my time with loved ones or memories with myself that I let slip by or not appreciate. I felt like I really soaked up my time at home with Mom over the holidays, but I also really cherished my time at home. I cherished the little moments with Mom and with my family. I really want to strive to be better at this rather than always thinking two steps ahead or not being fully present.
My Epiphany Resolution:
3. “Evacuate MY dance floor.” I love to dance. This is no secret and I have talked about this many times on this blog. New Year’s Eve as I was staring at a football bowl game Husband was forcing me to watch by taking over our TV, I had a thought- I have really struggled with letting people bother me. The kicker is these are people who in no way directly influence my life on a daily basis. They are people from my past, people I only know about through Facebook or people who used to be friends and I am working through the ending of that friendship. The point though is I allow these people who I never interact with to control my moods sometimes. I allow myself to ruminate on their actions or words that were hurtful to me and in effect I end up in a downward funk. I am realizing though that my family is facing and is going to continue to face some trying times with Mom. And using her as my focus, if there are people in my life who I don’t think I can pick up the phone just to say “I am having a hard time” then those are people who should not be in my life. So in effect I will be asking them to “evacuate my dance floor.” I will not literally be informing them of my decision but I am going to internally hold myself accountable to evacuating them from my dance floor and therefore my thoughts. This is going to be my motto of 2013. Because I do believe I am hitting a point where friendships are harder to maintain, life is throwing bigger curve balls my way and I need to surround myself with people who I want to be surrounded by whether it is being in their company or thinking about them in my mind.
So here we go. Thank you for sticking with me as I kick off 2013. I love this blog and am so thankful for the people who have found it and read it- more than you know. I look forward to navigating 2013 with you by my side and knowing that no matter what life throws at me this year, I am lucky to have this place to come and deal with life.
How were your holidays? Do you believe in New Year’s resolutions? Do you think it’s important to take the time to “cherish the moment” everyday, not just during the holidays? Did you know there is a song called “Evacuate the dance floor”?…it may or may not be my new anthem 🙂
September 13, 1980. I wasn’t born yet. I wasn’t even a flick on their radar. I imagine they stood there though. Mom and Dad. Not yet a Mom and Dad, just a man and woman in love. Saying their vows. Living in the moment as a bride and groom. Relishing in the excitement of getting married.
On that day they also said some vows to each other.
“I ___ take you ____ to be my lawful husband/wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and health, until death do us part.”
Simple words. Powerful words. I have thought a lot about these vows for the past 3 years as I have watched Mom and Dad deal with Mom’s MS. Dealing with an illness that has brought circumstances they never could have imagined standing there together 32 years ago. Circumstances no bride and groom could probably imagine as they stand together saying their vows on their wedding day.
I have watched my parents wrestle with Mom’s MS for the past 3 years since her diagnosis. I have watched the love and support. I have watched Dad deal with so much. I have watched Mom deal with so much. Their life is very present in those marriage vows. “…in sickness and health..” They live their marraige vows everyday.
Today as my parents celebrate their anniversary I can’t help but thank them for providing the ultimate example of love and committment to me. They show me everyday the true meaning of wedding vows. The circumstances may have changed a bit in the past 32 years, but the love that was there as they said those vows remains the same. It’s love that allows them to hold on to those vows. Never wavering or faltering. It’s from them I have learned the power of love.
Happy 32nd Anniversary Mom & Dad!
I have readers that have shared with me the impact of MS on their lives- those with MS, those with family members and friends with MS, those who have parents with MS. After Mom was diagnosed I immediately went to the MS Society website to begin to learn how I could get more involved in their efforts for a disease that now personally impacted me.
Sister K and I did the MS Walk one year and we really enjoyed it. It was after Mom was newly diagnosed and we wanted to participate. We coordinated our outfits with pink and purple shirts, our official “best friend’s uniform” and then showed up to discover most people were in orange as it is one of the main colors for the MS Society. I found it comical. We were so new to the impact of MS on our lives that it had never occurred to us there would be a unifying color we needed to coordinate with- now we know better.
It was a powerful experience though. As Sister K and I drove up to see all the people out there to support those with MS, Sister K got tears in her eyes. We were filled with a rush of different emotions because we had never experienced anything like this before. We want to do more and are seeing what else is out there. Maybe someday the MS 150 but that requires quite a bit of committment and training, plus it requires the purchase of a bike.
I am curious if you have ever participated in fundraising efforts for any purpose, MS related or for any other cause? Did you learn things after the first time you did it? Have you ever done it again?
A recharge weekend. A brief but important escape. A sunburn souvenir. These are all the perfect ways to describe this past weekend. Husband and I headed to the beach for a quick mini-vacation before he begins the 2nd year of his MBA program tomorrow. I didn’t realize how much we needed the mini-vacation until yesterday as we were heading back.
This summer has been one focused on Mom. Husband was also out of town for an internship for most of it too. I know it may sound bad to say but this helped me to balance being a daughter during that tough time with being a wife. But, as Husband and I near our 2 year anniversary in a few weeks I don’t feel any more knowledgeable on that subject than I did when we first got married. That balance is something I am still trying to figure out. Even under completely uneventful circumstances I don’t believe it is something that would happen magically overnight.
Mom’s MS brings a level of stress to my own life. Husband’s rigorous MBA program has also done the same. Both are out of my control but directly impact my life. Just as I felt Mom’s MS may be settling down, Husband’s job interviews are creeping up indicating a stressful time for us. It’s kind of like a seesaw and I just go back and forth between the two for the time being. It is also difficult balancing that because my roles in both situations are different. On the one hand I am a daughter and on the other hand I am a wife. They are roles I am still figuring out how to shift between on a daily basis as each one can require more of my attention at certain times.
This weekend at the beach helped tie all of this together for me. I have memories at the beach with Mom and our family when I was younger. I have memories of vacations spent at certain hotels, playing in the ocean with Sister K and eating at our favorite restaurants. It was unique to share that with Husband but also create our own new memories. It was a way to bridge my childhood as a daughter to my adulthood as a wife. It was also a way for me to enjoy both roles without the stress that can come with them. Being at the beach took me back to the basics of life. Whether you are looking out at the ocean or playing in the waves it can be a big cure for a lot of different stresses. No matter what phase of life you are at, the beach is the one place you are never too old to enjoy.
Do you have multiple roles in your family you have learned to balance/shift between? Do you have any special places you went as a child and visited as an adult with different family members? What is your idea of a recharge weekend? Anyone have any remedies for sunburns? I am hurting today and imagine I will be all week. I put on sunscren in the morning but learned the hard way you have to always reapply…
Meet Mom. This was taken on my wedding day. This is our relationship. Holding hands. Supporting each other. Sometimes you don’t need words. Sometimes you just need someone to hold your hand. When Mom holds my hand I know everything’s going to be alright and in this moment with a squeeze of a hand that’s what she told me.
Now I hold her hand as we navigate the muddy waters of MS. And without words but with the squeeze of my hand I let her know I am here.
I can’t put into words the love and respect I feel for my Dad. I believe deep down he is the reason our family is surviving Mom’s battle with MS. I have watched and continue to watch a transition as my father has become a caretaker. It brings back unsettling memories because I just watched my Grandpa go throught he same thing with my Grandmother as she battled Alzheimer’s. I watched as he became a caregiver to her and feel now I am watching Dad go through the same transition. And it is hard to watch.
Since this transition began I have felt my mind sharpened to the reality of marriage. My family is not large and up until I got married these two men, were the biggest male influences in my life. They still continue to be large influences as well. As I got married in 2010 and said my marriage vows, they really meant something very personal to me because I felt I was watchingthe tough parts of those vows lived out everyday. I understood the meanings behind the powerful words “for better of worse, in sickness and in health.” I understood the meaning of a committment and what it can mean through the tough times.
But I struggle with Dad’s transition in becoming a caretaker. He basically is one but I prefer to believe he is transitioning because it is difficult to think of Dad and Mom’s relationship that way. It is something I never gave much thought and if I did think about it, they were thoughts that this would not occur for many years from now. I also struggle because this level of responsibility and constant caretaking can take a toll on anyone. Dad will talk to me sometimes about what is going on and I don’t know what to say. I don’t know how to offer support. What I want to do is pack up and move back home. I want to find a way to be there for my parents all the time. I want to help him with Mom, be an extra set of hands for him and just provide extra help. But this hasn’t been in the cards for me up until this point and I don’t think it is.
So what can I do. I feel helpless again. I continue to feel helpless. I feel helpless because the best way to offer assistance in this situation is to be there. I also feel helpless because there is no way for me to be there except for brief visits home on the weekends. In the past year my husband began graduate school for his MBA so we moved about an hour and a half away closer to my hometown. We were 4 hours away before. This was a step. But without physically being there, how do you offer assistance. How do you help someone who is doing everything and you are doing nothing. And he does it all- he takes care of Mom full-time day/night and works full-time. He balances both of those responsibilities and he never complains. So I complain for him because I know he must be exhausted. I know he must struggle. How does he do it I wonder. How.
I think it’s love that makes him do it. It’s love that keeps him going, keeps him supporting Mom. Love is powerful but is it enough? I still struggle with how I can help him. How can I be there for him. Going home more weekends, calling to give him a sounding board to talk to, reassuring him that what he is doing is so important and we are all here for him. The struggle continues and it’s something I think I will struggle with for a long time. But it’s a struggle because of the love I have for my family. It’s a struggle because I want to be there for them as much as possible. So while it is a struggle, it is a struggle worth having and one I should feel fortunate to feel at all.