You didn’t cause multiple sclerosis in your life
You didn’t cause multiple sclerosis in your life by the foods you choose to eat or not eat, by the supplements you choose to take or not take, by the DMTs you choose to take or not take, or even by the prayers you choose to pray or not pray. You didn’t do anything wrong or even live a bad life that brought about such terrible circumstances. That’s all just a bunch of crap… and it makes you feel like crap as well. No one deserves to be made to feel like that.
You didn’t cause it, can’t control it, and can’t cure it. It’s not your fault if other people leave you because of your illness or even because of how you are dealing with it. It’s not your fault that you are sick. Don’t even let that thought take ahold of your heart.
You are so much more than MS. It’s something you have been diagnosed with… and that’s all. It’s not your name and not who you are. Don’t forget that.
You don’t have to hide the fact that you have MS in order to make others comfortable and you don’t have to be an inspiration to others every time you share your life story. Many times you just want to scream and wish others could see just how difficult an MS life is. They never see the pain that overwhelms you, the despair that sets in at such inopportune moments, the hopelessness you feel at times, or even the tears you wipe away when no one is around.
You’re allowed to stay in bed if you can’t get up to do anything but go to the bathroom. You’re allowed to have bad days. You’re allowed to wish life was different. You’re allowed to miss the old you and all the things you used to be able to do.
But one thing you have to do after a short time of pity-party moments is remind yourself just how amazing you actually are. Take a break from life, take a deep breath and take care of you. That’s not being selfish, that’s caring and being kind. As airlines like to remind us, it’s important to put on your own oxygen mask before helping others do the same because if you run out of air, it becomes a lot harder to help anyone, including yourself. Treat yourself as a friend.
Home should be your safe place, your sanctuary. Consider filling yours with what brings you joy, whether it’s live plants, pictures of happy memories, or art you love to look at and remember to smile. It always helps.
You will get through the tough times and come out with a strength that you never realized you had. You’re getting stronger even right now. Hang in there. You got this.
1. Simplify your life.
Thanks for this post. I have parkinson’s disease and all you’ve written, applies to me, too. It’s a game changer alright and absolutely not what we’d wish for! We’re not our disease, but we have to carry our disease for the rest of our lives. It’s hard, but we do indeed need to focus on what we have and not what we’ve lost. Sending love ❤️
Thank you Sarah. I’m agree, this applies to other illnesses as well. Love your attitude. Sending lots of love back. xoxo
I tremendously appreciate you for encouraging us and inspiring us!
Thanks Marsha. So glad I have been able to help sharing my own life experiences with MS.
I, admittedly, have a bad attitude about what MS has taken from me. My sister (my best friend) lost her life to MS 7 years ago, and I feel like I’m on the same path. I recently had to get a power chair, and my neurogenic bladder has finally quit altogether so I’m getting a suprapubic catheter in 2 weeks. I just can’t get “cripple with a pissbag” out of my head. 23 years of hope, trying different meds, diets, prayers… I’m just mad now.
I will keep you in my prayers. I had an SPC for close to 9 years until the urologist suggested a bladder removal. I was nervous about that surgery as well, but am glad it took place. I have a bit more freedom now even from my powerchair. You are going to get through this. I’m sorry about your sister. Will be thinking of you in the coming days. sending you lots of love xoxo
Thank you for posting this. You have just the right words as usual. It is particularly good timing for me because I’ve been in the hospital since Monday for solution IVs. These visits are often 8-10 days for me and it’s a lot of time to think (or overthink). You’re the best!
Aww, Dawn you are amazing. Hope your hospital time will give you a break from life itself and give you a moment to refocus on the important things. You are a WARRIOR. Don’t forget that. xoxo
Your posts need to be read by EVERYONE, not just those who have MS themselves or have a family member or spouse with MS. We seem to sometimes somehow get forgotten about. Brushed under the carpet. And yet, when the tables are turned and they have something happening in their lives we seem to be the ones that are available and provide the tissues. Funny how that works. ♀️
Thank you Janet. I wish it could be read widely as well. I hate being forgotten about or treated as second class citizen. Love to you. xoxo
Thank you for saying what I wish I could shout from the roof tops! Right now I wish I had a local personal friend to share but they seem to have all gone away. Sad and strange at the same time. But I’m okay. I can live knowing who i am.
This post came to me at just the right moment. Thank you.