HELLO, HELLO! I hope all is well with everyone. Yes, I have been absent for a little while and have missed laying my heart out to those who are willing to read about it. I must say I’m really enjoying putting together a nonprofit organization for our community. It’s funny how I set out to build this organization for the community but it’s so interesting how the community pays it forward right back. I am enjoying communicating with the area to come up with programs that may not be available yet. It is a lot of WORK with a few yeses and a whole lot of NO’S 🤔. I am grateful for the No’s. They inspire me to work harder. I get it though. Who am I to think I can help Inspire those out of an angry state of mind into a more positive mindset. Well, I am that one that wakes up happy taking notes of what kind of day I’m going to have. I am that one who is not going to let multiple sclerosis change my happiness. I am a person who enjoys inspiring, talking, and engaging with others about our fight. That right there alone is healing to me. That – I love making a part of who I am. I was telling my mom recently that I can no longer put myself out there with negativity. Multiple Sclerosis and negativity do not get along! For me it’s like oil and water. Temporarily you can get oil and water to blend but it’s not forever, a rather short interaction. You have to keep your interaction with some people the same way and that’s okay. It’s necessary in order for you to find a new balance and realizing Who You Are. I AM at the point in my life that I realize I strive off of positive thoughts, positive energy, positive people! Everyday I’m finding ways to customize a routine, a plan that not only works for me but everyone around me!
Multiple sclerosis does make me angry though. I don’t want you to think that I don’t get in a funk because I do. Multiple sclerosis makes me angry in ways that I resent that my family has to go through so much from my disease. Why? Why? Why? So I had to find ways to deal with this. This one thing has the potential to change who you are if you allow it. I am a mama bear and I suffer daily to watch my family deal with the fine details every day to make our lives work. Sometimes it’s hard to indulge the fact that the rules have changed. I am Mom and what mom says goes, but at the same time they have the liberty to tell ‘Me’ No for my own good. This too can change who you are, you’re not losing control your loved ones are organizing a new balance that’s healthy for you. Setting ground rules and make sure everyone has an understanding so that you don’t get lost in what you’re dealing with is crucial. We have to stay focused and I understand that it’s not our fault that we go through a whole lot of pain and confusion. I also understand how lonely of a disease multiple sclerosis can be. We are always walking in somewhere or at an event where you’re the only one who may have a physical struggle, but own it! Own it with a smile! Be approachable! You would be surprised at the strangers and the people who want to help you if you just let them. Something that I still have a problem with to this day. I’m working on it though. Honestly sometimes I forget they’re offering help because they see what I’m going through. Me forgetting that I don’t have to do it all by myself, even when I’m out by myself- if they offer. I came real close to losing my independency and I still can if I’m not careful. But it means the world to me to still be able to drive and go out on my own. But let me be clear, I have to work for that independency everyday! Yes, I have limitations! That is one of the hardest parts of my day is leveling and balancing my limitations. It means the world to me to be able to help my husband run this family.
Sometimes I forget…Sometimes I forget that I have to slow my pace down. We may miss a whole lot of activities as Warriors that we just can’t be involved in but don’t get stuck. Remember that you have a whole community of people fighting with you to live. Never let that change who you are. Maybe instead of pouting or feeling down on yourself for having to say no to an activity. Take that time to work on something just for you.😄😄😄
More importantly sometimes we can get lost in our own pain and hurt that those caring for us has to feel it, see it, fight with you. So don’t push them away. They don’t have to do what they do. Apologize if you’ve been snappy. Thank them periodically for the hard work they do. Make sure you let them know it and that their care and hard work doesn’t go unnoticed. That too can become a part of Who You Are. A less bitter you and a more positive one! Remember, balance!
Again, a life with multiple sclerosis always seems to result back to a certain balance. Cut yourself some slack! Find new ways to love your new limp, that stutter that’s getting worse or even how slow your life has become.😉 What you’re doing everyday is unimaginable. Find ways to love that! Make that Who You Are, understanding that multiple sclerosis is only a part of Who You Are. With that comes some reinvention. You have to reinvent yourself, find a new balance, let go of some of your anger and find the rythm in your heart and make a new step to it. I promise if you step for me, I will step for you🤗