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,
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
No one can prepare you for the difficult and/or awkward questions that your children may have about your MS. I have had the MS diagnosis before I had children so they have grown up with this and not known me any other way but many of you have been diagnosed after and both scenarios have their own sets of challenges. I was still afraid for this day to come and dreaded the tough questions but it already has already happened in my household.
My children have asked
- “Mommy will you die?”
- “Mommy will you always have MS?”
- “How did you get MS Mommy?”
My best advice is to be honest but to keep the facts age appropriate when you are talking to your children. My children are young so I didn’t want to scare them. I was worried about telling them too much or not saying enough. I just trusted my gut instinct when doing this because no one knows my children better than me right? I did some researching on the internet for some helpful advice so I was prepared beforehand but as best prepared as you try when it comes to children and asking questions expect the unexpected. Are any of us really ready for this?
I just typed this topic into the search engine and pages of websites came up but here are a few example
Top three traps to avoid I would suggest are
- Avoid using medical terms they will have no clue what they are and it just confuses them
- That MS is NOT contagious and they can not get it by kissing or hugging you
- There are researchers all over the world that are searching for a cure everyday
Whenever I have had to explain anything important to my children I try to end whatever conversation we are having with a positive one so that they are not scared or worried when we are done talking. I reassure them that we take our lives one day at a time and enjoy it as best we can. We don’t waste our time or energy worrying about “what ifs” in the future. I sympathize with you if you are going through this right now because when it comes to our babies we want to shelter them from anything scary.
Do those of you who have been in this situation before have any advice for our Moms with MS family? Please feel free to make comments under my blog I would really like to know how others have handled this.
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:)