A part of me has bittersweet feelings about my children heading back to school soon. Yes, I will miss seeing them a lot now during the days, sleeping in and staying up late but I defiantly will not miss the fighting, tattle-tailing and constant bickering. LOL
Is it just me getting too old or have you ever noticed that certain sounds annoy you? I mean this is worse than annoying it literally drives you bonkers!! Have you ever had your kids fighting or playing loudly around you and the music or TV on in the background at the same time and you felt like you were going to spontaneously combust from all these sounds? How about this scenario – you are driving on a field trip and you have 6 kids in the back of your vehicle talking loudly and having several different conversations? Does this drive you nuts and you wish you could run away from the noise? Your brain is probably feeling like it is going through sensory overload and it can’t handle all these noises happening at once.
My youngest James who is 3 years old is going through this phase of screaming and I have wanted to crawl in a quiet dark closet to escape this when he does this. I used to just chalk this feeling up to me getting older and not being able to tolerate noisy situations anymore but when I read that this is actually a symptom we can suffer from our MS it made a lot more sense to me why this bothers me so much.
Do you think you have ever experienced sensory overload? Or Myoclonus as it’s called. I never knew there was a name for what I was feeling or that it is was related to my MS. Loud noises such as TV or radio, people talking loudly etc. this seem to really get me agitated some days and I could never figure out why until I read this link.
If you experience this what do you do? Do you have any good tips or suggestions that you have that help you to deal with sensory overload? Please share in the comments section I would like to learn more ways to deal with this.
Hope you are all enjoying the last bit of summer 🙂
Once we learn to deal with what our new “normal” is and we have grieved for our old self this can be such an important tool we use daily in managing our MS. I think it’s important for us to grieve the person we used to be because lets face it no matter if we have changed physically (inside or outside) we aren’t the same anymore. How could I go from enjoying running one week and then to the next where my fatigue was so bad it took every once of my being to get out of bed? We learn to adapt and over come and get used to the “new normal” for us no matter what that may be now.
I think one of the hardest things about dealing with this MonSter is to know your limitations. When I was first diagnosed as a young adult I pushed my limitations to the maximum all the time. This was probably because I was still in denial about even having multiple sclerosis. I would go out with friends my age to do what young college kids do in enjoy the nightlife and then pay for it ten fold for days after because my body couldn’t bounce back the same as everybody else’s. It took me many years of what you call “pushing the envelope” before I truly realized that I needed to know what my limitations were so I could manage my MS better.
This became a very apparent life skill after I became a mother for the first time. I like to think of my energy levels as a battery. Some days I wake up with a full powered battery of energy and feel ok. But then I have to remember every thing I have to do in this day will take away from my battery charge. When I wake up some mornings and I already feel like I am only dealing with half a battery of energy then I prioritize what I really need to do this day and what can wait for another day. Being a type A personality was a challenge with this as this was a tough one for me at first because I wanted to get it all done. I felt guilty if I couldn’t keep up to what other mom’s do but then I learnt that I needed to stop trying to compare myself to others and the world wouldn’t end if my laundry waited another day.
Learning to say the word “no” is also very empowering and liberating when you need to say it. You know what I mean when there are other moms who ask you to help with some school function in the evening that your children attend and you know darn well that it’s too much for you to handle a task like that. Part of you really wants to help because you feel as a school mom it’s your token “duty” to help out as much as you can but the other side of you knows darn well the physical part of handling this task and especially in the evening will wipe you out for days. I have learned how to say no to tasks that I know are too much for me to handle now and not feel guilty after.
A smart person once told me this quote a long time ago that I want to share with my fellow MS Moms.
“Be yourself, everyone else is already taken ~ Oscar Wilde “
So be kind to yourselves and remember we all go through similar experiences so talking to other moms with MS can really help you feel like you are not alone. If you are on Facebook come join us https://www.facebook.com/groups/momswithms/
Until next month take care of yourselves,
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,
Have you heard the saying it takes a village to raise a child. This is so true and if you have a chronic illness then this manifests that concept tenfold I think. It’s frustrating at times when we aren’t sure how we are going to feel from day to day so sometimes we might be a bit reluctant to make plans too far in advance. I find this a challenge when it comes to my children’s fieldtrips at school. When they are all day field trips I do not volunteer for them as they can physically be too much for me. I try to help with any that are shorter or closer to home because my children really want their mom at their field trips sometimes and I don’t want to disappoint them. So in preparation for these days I have to really manage my energy days before in advance to ensure I am not doing too much physically. I kind of think of my energy as a gas tank. Some days you wake up and you only have “half a tank” of energy so you have to prioritize what really needs to be done that day and choose what can wait for another day. I found using this terminology with my kids now helps them to understand better how I am feeling.
When hockey season rolls around like it will be soon I get pretty anxious as it takes a lot out of me to take my son to his practices and games etc. Not to mention a lot of the arenas around here were built many years ago and are not accessible if you have mobility issues. I am so fortunate to have an amazing friend who has a child on the same team and a lot of times last year my son caught rides with them that were away games because the driving just plain wears me out. I truly appreciate her kindness for helping me. Its friends like this I treasure in my heart because they really care and want to help.
I think this is where I carry some guilt when it comes to not being able to do more when it comes to my children’s activities. I try to remind myself that I do what I can when my body allows me to and I need to let that guilt go for the times that I can’t help. I used to take it to heart what others thought or judged me for but not anymore because I truly feel worrying about such non sense is a wasted emotion. I think we can be so hard on ourselves when we are a Mom with MS aren’t we? It’s only human that we want to do more for our children but knowing that we just can’t keep up like some other supermom’s out there and that’s ok. It does not make us any less of a mom.
Be Kind to Yourself
There will always be times when it’s hard to remember your strengths.
These are the times when you need to give yourself special attention.
Be kind to yourself… Kindness nurtures and gives hope to growing dreams.
Respect yourself… Listen to your needs, and treat yourself as you would to a friend.
Encourage yourself… Remember what you truly want, and fight for it as you would for your life.
Appreciate yourself… Don’t take for granted the qualities that make you unique.
Focus yourself… It is with discipline and motivation that you will move towards your goals.
Be giving towards yourself… In that way, your strength will thrive, and you’ll be realizing your goals a day at a time
I haven’t slept well since my first child was born. I’m sure this is very similar to other mothers with young children. You know what that is like you sleep with one eye open and are ready to console if one is crying from a scary nightmare or if you hear a little foot hit the floor if one is sleepwalking. Our inner strength as mothers is truly amazing even at our tiredness of days we still find the strength to put their needs first even when it’s our darkest hour.
It’s hard to explain the chronic fatigue we battle to others who do not experience it. My best way to try to explain how it is for me sometimes personally is to imagine yourself running up a steep hill in extremely hot weather with rubber boots on with cement filled in them. It doesn’t matter how much rest you get you still wake up and feel like you just ran a marathon. I can honestly say though my fatigue has gotten a little better since I was treated for my first venoplasty for CCSVI 5 years ago. I still have it but I have more good days than bad now with it.
So as a mom with physical limitations it’s a mine field you try everyday not to step on the “guilt mines”. You could feel guilty for pretty much everything. The worst for me is I have struggles everyday with physical jobs or chores that need done so I ask my children for help. I know it doesn’t hurt to have them help me but at times they just want to be playing and be little kids and that makes me feel guilty for having to ask more than a mom who doesn’t battle with these issues. My oldest son always says to me if he sees me struggling with something “Don’t worry mom I can help you” so I guess to raise children who will be more aware and empathetic of others with disabilities are life skills that are so invaluable ~ but I still feel guilty. My children have never known me any other way because I was diagnosed long before they were born.
Here is a quote from an amazing lady I follow on Facebook Caylee Shea. She is a Model and activist for the Chronically ill.
“One of those days when I just need to cry. I need to be angry, I need to be frustrated! I am just so tired of being so tired. Living with chronic illness is not easy. I don’t just wake up and jump out of bed with a smile. No. I literally plan every move and only get a limited few. Every move comes with a price. Every move causes a symptom.
Being alive we have two choices- make the best of what we have or simply don’t. I choose to make the best of it. But this is still a battle for me every single day.
But that does not mean I am not going to need to rest my weary head and cry once in awhile. The way to stay positive is to allow ourselves to cry when we need to.
And today ~ I just need to cry. “
“I try to live in the moment and not beat myself up too much”
So please try to be kind to yourself and if you are having a bad day just know that it’s ok to cry and be frustrated because this MS monster steals a lot from us. We are only human to grieve the way we used to be before diagnosis.
I want to hear from you as a mother with MS. What tips can you share that make your life a bit easier? Please comment on my blog below so we can all know we are not in this alone.
Until my next blog take care:)
In July we were looking at our “work status” and sharing what our status was…here are the results!:
As you can see it looks like a majority of us are working! For this month (August) we are looking at the best ways that our partners can support us! Please visit us and share how your partner can best support you.