24 Years Ago, Bombshell was Dropped..

M_WalshHello my name is Michelle Walsh and I was diagnosed with MS 24 years ago. It all began when I was 18 years old, in my first semester of College, living an hour away from home when I started to notice something was not right with my body. I got very electric pins/needles in my arms and legs that were so painful it felt like they were plugged into the light socket. I went through 4 different emergency room visits only to be told by the doctors “it must be stress and go rest you will feel better”. As the weeks went on I didn’t feel better. Things got worse with an over whelming fatigue I could barely get out of bed in the mornings no matter how long I slept so I called my parents to say I know there’s something else going on with me. My mom is a nurse and she knew there was something not right either. I drove home to see my family doctor who then referred me to a Neurologist who specialized in MS. The Neurologist did several neurological physical tests and after he said “I am 90% sure you have Multiple Sclerosis” Over the next few months I had a spinal tap and MRI that confirmed this. I have never forgotten this day the bombshell was dropped.

I was initially very mad and sad. I thought what kind of life will I have now? Will I ever find anyone who will want to marry me because of this diagnosis? So many emotions went through my head for the first while sad, anger, disbelief, etc. I just couldn’t understand how I could run long distances before and be so active months ago to now being so tired that I can barely get out of bed. I was diagnosed with Relapsing-remitting MS so when I learned to pace myself, not over do it I could manage this MS monster.

I competed for Rodeo Queen Contests and won two titles to then advance to compete for Miss Rodeo Canada. Another one of my dreams was to be a Flight Attendant and I went on to do this too. I flew all over the world and saw so many amazing places and worked with many amazing colleagues. I also in this time of my life met the man of my dreams. Mutual friends of ours set us up and we hit it off instantly and have never looked back. We have been together for 13 years now, married for 10 and have three beautiful, healthy children. We live on a mixed farming operation in southwest Saskatchewan.

So after being diagnosed for over 24 years I have learnt a lot of things that I want to share with others who have MS

  1. To take this MS monster one day at a time. Be kind to yourself and stop putting unrealistic expectations on yourself. If it’s the kind of day where you are fatigued then prioritize what really needs to get done to get through the day and what can wait for another day.
  2. Accept the kindness and help of others if they are offering it. Trust me this is still a hard one for me to deal with because we want to try to be independent as long as we can. But if someone is offering to help you out when you are not feeling well this is out of kindness and concern for us and you should take it because you are no less of a person for accepting their help. You are just being smart in conserving your energy and realizing that others care and want to help.
  3. We lose a lot of dignity with this disease be it with our bladder, bowels, vision loss etc and if you set your pride aside and use the devices that are available to make your quality of life a little easier this will help your stress levels. Once I got past my pride and realized I needed the cane/walker/scooter to get around with it made my life so much easier with less falls.
  4. Try to talk to someone you trust be in a close friend, relative, your psychologist because keeping your emotions in will not do you any favours but it physically flares up your MS. Also doing whatever type of activities to help manage your stress such as yoga, meditation, massage therapy, listening to music you like whatever works for you helps to keep your stress levels down. This is so very crucial in regards to managing our illness. When I worry or get stressed too much this can bring on a relapse in a heartbeat for me.

I am so very honoured to be Blogging for Moms with MS now and hope I can connect with other MSkuteer moms and dads out there so we all feel connected and not alone. Living with MS as a Mom has its challenges for sure but it can be done.

Please connect with me on Twitter @exflygal
Facebook https://www.facebook.com/mwilwal

Until my next blog take care,

Michelle Walsh
Saskatchewan, Canada
Board Member for Canadian Neurovascular Health Society
www.cnhs.ca

Introducing Michele Mateus our new blogger here at MOMS with MS

Hi I’m Michele Mateus and I am excited to be a new blogger here on Moms with MS.

I was diagnosed with Relapsing Remitting MS in 2008 in which presented itself with optic neuritis. In 2011 I was hit with a huge relapse that left me in a wheel chair for 5 months then a walker after that for another 3 or so, and a long road of rehab to get strong again. During this period I was blogging for the WAMS Foundation (who helped me in fundraising to get my CCSVI) and I loved blogging and sharing my experiences and outlooks on how we can live with the MonSter. When I stopped blogging for them I missed it but was not sure where else to blog and starting my own seemed all to overwhelming. Fast forward a few years and here I am sat now as a new mother, and like many new moms do I was struggling with the new role, but also my MS was there in the background popping up on days when I really could have done without. So I searched for resources on being a mom living with MS and I came across Moms with MS. I was excited to see that there was a blog and an online community of other moms that would really understand what it is like being a mother who lives with a chronic illness. Meeting new mom friends is hard enough to say the least, so finding this space was very exciting to me!

I reached out to Kristin that started this site and after we started chatting a bit I remembered that she read my old blog and would often retweet and share my posts; pretty cool how things often go full circle in life. She asked me if I would consider writing for Moms with MS. When you blog for something you believe in, something that is part of you it makes you vulnerable but it also empowers you. Some of the things that came to mind when she asked me were:

  • do I want to go ‘there’ again? ‘There’ meaning opening up to the world and sharing my inner thoughts and my challenges (and of course success too!) in a world that is so much more online than it even was 4 years ago.
  • I worried that putting myself out there again could effect my professional life and my photography business. Would people judge me and see me as someone not as strong that they could rely on because of my health condition?
  • Would I loose potential clients if they knew I had MS? Would my peers think I can’t do my job well because I am ‘sick’ (ps: I don’t think of myself as being sick, ever)
  • Do I even have time for this?

After I went back and forth on the worries I had that were blocking me to do this, I then thought of the positives.

  • When I blogged before my blog was very active, I would often have upwards of 10 comments on each post that became like mini discussions, which was great to be part of.
  • Blogging allows one to connect with others that are experiencing the same thing and makes you feel you are not alone.
  • Blogging makes you feel part of something bigger and positive.
  • Blogging can be therapeutic and help one work through some of the struggles faced when living with a chronic illness.
  • As someone that loves to research blogging is a great incentive to do so, reading about new therapies and ways of self care, which are things I used to read about and do so much more before becoming a mom, so in this case blogging is also a motivator.

After weighing out my fears vs. the positives that could come about joining Kristin I finally told her it was a YES and I was ready to go! So here I am introducing myself to this community and excited to be part of it. It is my goal with my blog posts to share some of my experiences as a mom living with MS and hopefully start some discussions around what that looks like and how we as a community can support each other. By we I don’t just mean moms with MS, I also mean those that love and support us as well as the general public. Knowledge is empowerment and if more people learned a bit more about the other we would cultivate more compassion and understanding in the world, and hopefully have less judgment and conflict.

I would like to say a BIG THANK YOU to Kristin for inviting me to join her here! I look forward to connecting with this community.

Michele Mateus & Her Family

Michele Mateus & Her Family. Photo credit @Alyssa Kellert Photography

Moms with Disability Survey

Looking for participants for an online survey for mothers with physical or mobility disabilities UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy. To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities. If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff. (UMMS IRB ID: H00001202)

It’s Getting Hot Out! How Are You Handling It?

I am fortunate enough to be living in Seattle, which right now seems to be one of the most temperate areas, at least compared to the other states it is. It is getting way hotter than usual though! We started with a winter with dramatically less snow than we usually do and now I’m thinking it is time to get an air conditioner! I don’t know of any friends that have an air conditioner but I’m going back to my days in NYC when the summers were scorching, and I know that having one made a world of difference. I was shopping on Amazon and decided to add a few of the things I found that had great ratings and high power to a widget, I’ll add them to the Moms with MS Store too to make it easier to browse, but this is what I have so far:

We are also working on getting some other cooling gear that we’ll be selling soon on the site, but more on that later!

Stay cool and share your tips so we can cool off too please! I know I’m making lots and lots of ice cubes for iced tea…and I’m considering brewing my coffee at night so I can have it iced in the morning too!