World MS Day is soon approaching on May 25, 2016. I found online some very inspiring stories from MS patients all over the world. Some very powerful words resonated with me from a fellow MSkuteer named Abdelmaseeh from Egypt.
He says “We are examples of how people are living with MS. We are people on crutches, people in wheelchairs and we’re are all living and working. Look at how beautiful life is. The world doesn’t end because we have MS. We show people how they can continue to live with MS. Even though MS has made me use two canes when I walk, it has not killed the love inside me for life and for people, and it has not made me give up. MS doesn’t stop me from seeing the beauty in life.”
I encourage you to go read some of these short stories on here because it helps me when I loose hope to find my way and know I am not alone on this journey http://worldmsday.org/stories/
Sometimes we are having a bad day and it may be hard to find the positive things in our life. It’s hard sometimes (I know trust me) but I try to be mindful of the good things to help me to not get sucked into that dark, black hole of depression and despair. I am just trying to get through these kinds of days in survival mode so I can get through the day unscathed.
Whenever I am feeling at a low point I always try to remind myself the alternative that I could have it a lot worse and then I remember it’s not so bad and I will get through this bad day. I also know that on low days like this after I get my kids to bed I then go to bed early too because everything seems to not be so bad after a good nights sleep.
Until next month,
For any of you who don’t know, this is an MRI machine…it is basically a giant loud box that we slide into after we lay on that padded part and our head is gently (but firmly) clamped down so that we can’t move it. Sometimes we get an IV attached too for various reasons involving contrast and probably other reasons I don’t know off the top of my head. Once all that has happened, the whole part we are laying on slides into that hole, a kind of dark cave withing the machine, where we stay for as long as they require to get the images they need. We spend anywhere from about 20 minutes to more than an hour in there holding as still as we possibly can.
My kids, are finally at an age I have times that they are in school, and so I can schedule MRI’s to happen at those times. It was not always like that though, for example when I was a single mom and my daughter was a baby, I did not have time like that. Except for the times when I was working and she was in daycare, of course I couldn’t really go get an MRI then because I had to be at work!
I am curious to know what everyone else has figured out. For me, I mostly didn’t get MRI’s when I had young kids, sometimes I did but I recall it being pretty stressful to get someone to watch my little one(s) while I spent time in the tube. I am very fortunate to have supportive family via marriage, though I know that is never a guarantee.
Do you have family support? Daycare? Babysitters? Has it worked for you? Did you try to get help from any MS related organizations?
Thank you for taking the time to let me know!! You can also send me a message if you want to share privately, you can comment and ask that it not be published and I will reach out to you. If you are member on the private site you can also login and comment there if you prefer as well.
As a parent, you work had to protect your children and give them a childhood free from the challenges and responsibilities that come from adulthood until it becomes time -preferably when they turn 18 and leave the home. But for me, I never thought the tables would turn before I reached my 35th birthday with the diagnosis of my MS.
My life story may be long and complicated, but the real hero of my story has been my daughter, Becky. I never realized how important she would become to me, not only as a friend but as a caregiver to me and her brothers. As a child she witnessed me being abused by my ex husband, she saw me struggle as a single mom that was homeless with 2 young children while trying to get back on my feet. Then I received my diagnosis 2 years ago, and she was the one who came to the rescue to help me when I had a husband who was dealing with his own demons. She cooks, cleans, manages to keep straight A’s and prepare for high school next year while keeping up with her 3 brothers -2 have ADHD and require constant supervision. From the very beginning I chose to be honest and open about my diagnoses. She went with me to pharmaceutical dinners, I provided her books from the NMSS that were geared towards teenagers to help her understand what I was going through and how it would affect her. She has had the hard task of explaining to her friends why she can’t hang out with them sometimes or why she has more responsibilities then they do. Never once has she complained how hard her life is. I have moments of guilt with her doing so much for me, but I love her and give her more freedoms as reward for her hard work. I’ve had a long talk with my daughter about her life and learned the hard truth that my life has been MS first and family second. My own daughter felt unable to tell me how she felt and be selfish with her life because mom has always come first.
MS is part of my life but it doesn’t have to be a us priority. We need to never forget that our children are “living” with MS too. They may be hiding their true feelings because they think we are too tired and don’t have time to listen to them. Take time to have mommy and me time. Do something special for your younger caregiver to show that they are loved and appreciated. <3
When you are diagnosed with a chronic illness like MS, a lot of things change after. If you think your life won’t change you are in denial because it does at some point. Some friends you tell about your diagnosis are there for you no matter what and provide you unconditional support. You know the kind of friend where it doesn’t matter how much time has gone by when you talk or get together it feels like you never were apart when you see each other again. Others unfortunately avoid you after you are diagnosed like the plaque or they slowly treat you different over time. Even people who were friends for awhile before you got diagnosed disappear or don’t want to keep in touch or return your phone calls anymore. At first I used to wonder why they would do this to me or beat myself up worrying if I did something wrong. This has happened to me as I’m sure it has to many of my fellow MSkuteers but this has shown me that its more about the quality of my friends for me now than it is about the quantity. I was once told you can always count your true friends on one hand. This is still true for me today. I have had friends come and go in my life but the closest ones to me in my life I can always count on. I know these chosen few I can count on my one hand who are always there if I need to pick the phone up to talk. I have always taken it personally at first when a friend decides not to be a friend anymore. Why do some friends leave us? It’s not like they can catch MS from us. Do they think for a second that we wanted to get diagnosed with such a nasty MonSter? I might be physically different than I was before but I am still the same person inside. When this happens we wonder why we said anything at all to them about our MS. If they knew us well enough and tried to understand our chronic illness they would know we have good days and bad days like anyone else. It is awful if I have made plans and I end up not well that day so then have to cancel but its not like I wanted to cancel its just that I knew my body wasn’t up to going out. If I know I have something I am going out to coming up I have to prepare and get my rest many days in advance. I know the average person might not have to do this but we with this MonSter do. I mean the energy it takes to get ready from having a warm shower, to doing your hair & make-up to getting dressed takes a lot out of us in terms of physical exertion. It’s like I am all dolled up ready to go out and I have no more energy left to actually go out sometimes. My close friends that know me well know this and don’t even second guess if I can’t go or can’t stay out too long.
Going through some good times and hard times with many friends (even some friends who also have MS) has also taught me the ones worth having around don’t make things hard on you. They just love you for being you and you don’t ever need to worry about their caring or loyalty because they are always there if you need them. These are the true friends you focus your time and energy on because lets face it life is too short and none of us know how long we have on this earth. Some friends may come in your life for a season and then go after awhile and that’s okay too. They came into our lives for a reason in the first place and were not meant to stick around for the long haul. So take the time when you can to show these close friends in your life how much they mean to you. These are the friends I truly cherish.
“A true friend reaches for your hand and touches your heart. ~ Author Unknown”
Until next month,
You are much more that your Multiple Sclerosis diagnosis. I like to candidly say that MS is merely 2 letters that are in my medical record. Sometimes those two letters impact me directly, but sometimes it is something else. When I was newly diagnosed (dx 2001) it seemed like I had way more “symptoms” because it seemed that nearly anything under the sun qualified as an “MS” symptom. It took me a few years to realize that on top of having this diagnosis…I am still a human being.
That sounds wrong, I knew that I was a person of course, I still had my college classes, homework, jobs and more to keep me from focusing too much on the diagnosis. It wasn’t til later that I realized how easily I was impacted by things that seemingly have nothing to do with MS though. For example it was a HUGE aha to learn that one of the most MS-ish symptoms I’d had could also be caused by a deficiency in B12. The symptom I am speaking of is called L’Hermittes, it is a totally weird symptom to experience that I can only describe as feeling like my spine felt like it was transformed into a guitar string that was being plucked every time I looked down. I was kind of excited the next time I felt the symptom because I had a new tool, I didn’t just have to wait and hope that the symptom went away, I could just try taking a vitamin, and it might work! I have been luck to learn about lots of random tips and tricks like this and because I have lots of little things to try it keeps me from going to the doctor so much. I’ve read a few Tim Ferris books (like 4-hour workweek) and I use myself as my own test subject. I am not as good about keeping notes and reporting back on them but for the things that affect me I tend to remember, or at least find myself checking the same sources to find the same answer.
Being a Mom is of course a huge part of who I am. I am also a graduate of a prestigious design school where I managed to earn my Bachelors of Fine Arts. I moved a lot as a kid from Alaska and went to more than 10 schools though still graduated HS on time. All of this was unfortunately before Facebook and so I’m not connected to as many childhood friends as I would like to be. Some people don’t realize that I was a single mom, before I created the Moms with MS sites but well after being diagnosed and becoming a mom I successfully worked at a software company full time for a few years! It wasn’t until after I got married and during my second pregnancy (and recession) that I was laid off and created the online peer support communities with my nervous energy between looking for jobs and nursing my baby. I’ve considered a huge amount of other career paths ranging from “Art Therapy” to learning some code and more. I’m still exploring and still learning every day! I love gardening too and have the idea in the back of my head that I should perfect the home vegetable garden and help people get their own started! I just need to neaten up my process…
There is of course even more to me but I’m really interested in hearing about you, and who you are other than being an “MS Patient”. I bet we all have our own unique stories and a lot more to talk about than just that one diagnosis. It definitely helps to get that story told but there is always more. Do you agree with this?
The New Year gives us a chance to reflect on the past year and be thankful for what we do have in my lives. When you have a chronic illness like we do everyday we wake up and feel well enough to get through the day is a blessing isn’t it? We often might find ourselves making goals for the new year that are unattainable thus disappointing ourselves if they don’t turn out. I like to be realistic and set one goal because I found this is more doable. This year I am sticking to my goal of being more active as I can (or that my MS will let me of course) but I am a big believer that “if you don’t use it you will loose it”. So for one with mobility issues such as myself this means I am walking with my aids as much as I can to keep my legs moving. Others might only have the option of using their arms more now and that’s ok as long as you do something right? One of my Dr’s who is practiced in Functional Medicine once told me avoid being sedentary. You could grab a water bottle and do some curls for about a minute every hour. Some other activities may include walking, stretching, or trying a mindful workout. This means 10 minutes of quiet time to your self without distractions. I know this is a challenge in my house because with young children when do we actually get quiet time? But really trying to make quiet time for even for 10-15 minutes a day for you can do wonders.
No matter what stage of illness we are in, whether we’ve just been diagnosed or we have lived with Monster for decades, there are adjustments we can make to increase the joy in our lives and to live more fully:)
Until next month take care of yourselves,