Happy New Year to all of you. Now that the craziness of the Christmas Holidays has winded down now I’m paying for it with my MS still in the 3rd week in January. I try to pace myself as best as I can during the holidays season but I know I still over do it which is why my body is telling me now ~ SLOW DOWN. I have been suffering with really nasty chronic fatigue some days in conjunction with nerve pain. The kind that is so bad that I know you can relate to where you have a shower/or bath and by doing this activity it ends up wiping you out physically and you need a nap after because you have used up all your energy.
The challenge I seem to be facing with my young children these days is they don’t understand why I am so exhausted. Its hard for me to help them understand the difference from when they are tired and when I am tired. Big difference between their fatigue and mine. I try to explain it as best as I can in their way they can understand it but sometimes trying to understand the kind of chronic fatigue we experience is even hard for adults to understand.
I try to plan the upcoming week so I can rest up before the busy days. When I mean rest up I mean these quieter or “down” days are doing the absolute necessities that need to be done and what can wait for another day to be done. My older two I try to get helping more around the house and this helps with my fatigue. I don’t think its bad to start asking them to do chores around the house either. As in my nerve pain the best way I can describe this to my children so they understand how painful this is for me is I tell them it feels like my nerves are on fire and as if they were plugged into the light socket that electrical feeling but way worse. I am headed back to my doctor next week to try to get this nerve pain under control so cross my fingers we can figure this out.
Do any of you notice your MS symptoms get worse in the winter months?
If so please comment underneath this Blog so we can all share our survival tips.
Well winter came much earlier than we wanted in Saskatchewan. It snowed here so much we beat a snowfall record that was last made 100 years ago. Today is another snowy day so I thought it was a good day to get caught up on my blog.
Lately my children have noticed with the weather getting cooler outside how my pain gets worse with my nerves especially in my legs. I had to search for my long johns the other day as I find keeping my legs warmer and layered up helps this nerve pain a bit. I am also taking many hot Epsom salt baths to help with the leg spasms. When it’s a cold day like today is I also don’t like to venture outside if I don’t absolutely have to. Sometimes this means that we might have to miss an activity or an event the kids want to go to. I know they understand if I have to cancel or reschedule if I am not feeling well that day but it doesn’t mean I don’t feel guilty about it every single time.
When these types of situations happen I try to talk to my kids about their feelings because I don’t want them to keep their frustrations in. My son has said to me before “Mommy I hate your MS”. Which I reply “I hate it too”. I think it’s important when our children are older and understand this topic to talk about it with them on how they are feeling. If my children ever got to the point I felt they were holding back from me I would look into them being able to talk to another family member(with me not physically there) or the schools also usually have guidance councillors. There are child Phycologists they could also talk to who specialize in children whose parents have an illness that your family doctor can refer them to. It’s hard to know sometimes when we need to give our children the space or distance to process something or when we need to encourage them to talk to us. I think not only with a Mom with MS this can be challenging but any mom with any illness or chronic pain issue would come across this challenge. I have tried developing the roots already and I know this takes time so my children can be open with me no matter what they need to talk to me about. Even if that turns out to be something I don’t want to hear.
If any other moms out there have any good tips on how you handle these situations when your family plans have to change due to your MS flaring up feel free to comment below my Blog I would love to hear from you.
Stay warm this October wherever you are,
I had an awkward experience this summer that felt like a good one to share. It’s isn’t really about the MS part of my life as a mom, (though my legs were partially numb!), but I think it is still relevant because sometimes we have a choice, if the situation/our bodies aren’t working/looking quite right, but good enough we can choose to just go for it, or sit out. Of course if we can’t we can’t, I’m not telling anyone to do what they can’t, but if we have a choice, go for it!!
“I was at a family camp, we go for a week every summer and my oldest daughter (on the right) absolutely LOVES to swim in the lagoon that they have there off of the sound. I knew this ahead of time and made a point to be sure to bring everyone’s swimming suit, including mine, particularly since I had recently…read more”
This post originally appeared on KristinBennett.com under “Just Do It!!” and both post and picture are shared/linked here with permission.
Thank you for sharing with us Lovey! You are making a difference in lots of lives and setting such a great example.
How do you feel MS has affected your parenting?
Join this important online conversation in our free webinar, hosted by Michelle Walsh, blogger at “Moms with MS”, on issues facing parents with Multiple Sclerosis and learning creative ways to work around your symptoms! Register today at www.genefo.com/webinarms
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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,