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I don’t remember life before MS

I know I used to be thin, beautiful and a very hard worker. But I don’t remember it. My MS is the same as the stories I’ve read; the countless articles, etc. However, I have a overwhelming sense of loneliness. I try to do good; I stick to my doctor’s plan. I always listen and take notes, I’ve even started walking a mile a day. Most days. Sometimes, I can’t and we all know as MS’ers that somedays are just not good. I think what bothers me most about ms and my life is that my mind is always second guessing itself and I don’t have a loving husband anymore. I got sick and he left. Easy as that- a 14 year down the tubes because I was sick. Now, nearly 7 years later, I still am a “divorcee”. I can’t get a loan approved for my home; even though I used to have my own home, now when I tell potential lenders that I’m totally and permanently disabled, they cease to return my calls. I always try my best but never feel like I’m doing enough. The fatigue is awful, as anyone with MS knows, it’s not just fatigue -it’s like your whole body for a day, a week, however long and you are left trying to walk through quicksand. I get the looks, you know, those looks of pity or people’s way saying they don’t understand why I’m disabled when I “look perfectly fine” ugh. How I hate that phrase. I’m just like everyone else with MS; I live in GA; which has the craziest weather fluctuations. One day it’s freezing temps; the next week it’s 90 degrees! And that’s no joke or overstatement. That takes a HUGE toll on me. And the humidity, oh- no matter how much estradiol I take; it still makes me sweat like I’ve run a marathon. While just walking is something I’m trying hard every day to do. I don’t think I let anyone really see my true weaknesses; the days I cannot get out of bed because I tried to do something “normal” the day before. I’ve met a lot of nice people along my journey the past 4 years after being diagnosed; but, I have also met some not so nice people. But always, the people I “meet” online that have this disease or has a loved one with it, are some of the greatest people of all. So I guess I don’t really remember who I used to be; it’s just a blessing to know now who I am. Day by Day. With the love and support of my grandmother and mother.

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Comments

  • B.L. author
    2 years ago

    Now, I just want to comment to everyone, Erin, Christa, Julie, and if I forgot or got a name wrong, I apologize- cog fog has its way with me A LOT! Lol! I want to truly thank each and every person that read my story and commented or even those that didn’t! It’s given me HOPE! That maybe today may not be a great day, but that tomorrow can! I love all of you and I thank God every day for all of you that have supported me! Bless y’alls hearts and I give thanks and hold each of you in my prayers! Bentley

  • B.L. author
    2 years ago

    Julie! Oh My! I cried and laughed while I read your comment. I wanted to knock your ex husband for a loop though! After 30 years ? Omg! I so cried about that! What happened to sticking by your spouse through SICKNESS and Health?! I know that keeping my sense of humor does help and I usually have it with me about 95% of the time; but I think I was just beyond depression when I wrote my story. Now, I have more of a sense of holding onto that humor that keeps me going. And the support you mentioned- yes! It’s way more support than I ever got from a man I thought would never leave me . I was scared to death to even write my story, but I’ve had some of the sweetest People comment and approach me after this that I’m SO glad I did it! I honestly don’t know if I would have crawled out from under that deep depression if it weren’t for all of you that have supported me without even knowing me! I thank God every day that I found this wonderful group of people and I bless each and every one of you!

  • Julie
    2 years ago

    Oh, my dear, you could have been writing about my life only my husband left after 30 years of marriage because he “couldn’t deal with my MS”. Really, he said that! I wonder where I go to not have to deal with it anymore?

    But that was 10 years ago and I have learned to live on my own. Was it easy? Of course not! But putting one foot in front of the other got me this far….oh wait, most days I can’t put one foot in front of the other! See, a bit of humor helps too. Yes, most days I don’t see anything funny about my situation but if I don’t laugh I’ll cry and I am done crying.

    Life really isn’t very fair sometimes. This is just a bump in the road that we have to climb over. I’m not trying to make light of the situation, just letting you know that there are those in a situation that you find yourself in as well. We will listen to you, support you and pull you thru it. That’s more than your husband did, right?

  • B.L. author
    2 years ago

    Christa! I cried when I read your response to “my story “. I literally could feel the empathy in your reply and I cannot tell you how much that meant to me! Sometimes ….I just don’t feel like I belong….here…anywhere really….and your kind and helpful words inspired me to really begin a new philosophy; I know I am disabled for the rest of my life but I am as you put it so well….focusing on being HAPPY! I have finally….after years …began dating, I have begun not just spending time with my mom and grandma, but I am very determined to repair the relationship I have with my Dad. I have also begun my photography hobby that I had given up after my diagnosis and am loving it!!! I try to tell myselft that it’s not my fault that I’m unable to work and even used the “retired” comment when I joined an online dating site! How ironic that I receive your beautiful message and you mention the same when trying to purchase a home. That is a great idea and I may have to check with my former boss on the specifics- he’s an attorney – and was like a dad to me the 12 years I was blessed to work for him doing a job I loved. Most would find title abstracting very tedious and dull , but to my very last days til I had to be forced to quit by Dr. I loved that job; but seeing it as an earlier retirement really makes a difference in my own mind. I really want to THANK YOU CHRISTA! You have given me such a sense of belonging and encouragement! I do bless you and your family and I hope that we are able to chat again ; I feel as if I have a friend now in you and that can mean the world to someone like me that’s lost nearly every friend I ever knew because of their misunderstanding of MS. Thank you so much and Bless your heart for reaching out to me! Bentley

  • Christa
    2 years ago

    Thanks so much for sharing such deeply personal, moving, and touching self-reflections. I’m pretty sure you know many of your observations are almost universal to the experience of having MS.

    Before I go on, let me offer a word of advice: I recently re-fi’d our (me & my Mom) house and also experienced the door slamming shut with potential lenders when they learned I was disabled….so, I changed my approach. Once I started identifying the income I receive as “early retirement” (I’m 48 years old), the reactions did a 180-degree change and we re-fi’d (with favorable terms) late last year.

    I must tell you what caught my eye while reading your post: I, too, have forgotten life before MS. It’s been 22yrs and I don’t remember what “healthy” felt like or what it was like to have endless possibilities as my potential future. I got sick one year after finishing graduate school.

    Like you, I can’t really linger on the what-if’s for fear I’ll lose my mind or drown in despair. My new goal is to master this notion of being “present” in the present in order to fully appreciate the little things in life. We’ll see how effective this is in undercutting the fundamental theme of my adult life: loss and sadness. Also like you, I’ve found the loving arms of family to be my saving grace.

    I’m going to wish you what I think is the finest accomplishment one can realize in this life: a profound sense of satisfaction with the direction of your life that leads to joy and gratitude which, in turn, leads to more satisfaction. In other words, be happy.

  • B.L. author
    2 years ago

    thank you again for your kindness

  • B.L. author
    2 years ago

    Thanks so much for commenting Sandy

  • Sandy Richardson
    2 years ago

    I can relate! Especially to the doing something normal, then paying for it for at least a day or more after. I was talking to my son the other day, complaining about people saying, “you don’t look sick” or “you look fine”. We discussed that these people only see me on my “normal” days and not the days I cannot even get up following those days.

    It is for my kids I wish this life would have been different. I got sick in 2002. Disability from hursing in 2003. At that time the kids were 6 and 8. This has been their life also since then. Their dad and I divorced in 2006. Not because I was sick, but that contributed. So the kids had a mom that had to rest up to participate in events, then recooperate for days after.

    This crazy MS makes life a challenge. I appreciate your post, it is so true to life. May you have a blessed day today!

  • Erin Rush moderator
    2 years ago

    Thank you so much for sharing, Sandy! I bet you raised very compassionate, empathetic, and open-hearted kids. When our children learn to see people for more than their strengths, I think it really helps them develop a much more mature and giving perspective on the world. Thanks again for commenting and you have a good day, too! Best, Erin, MultipleSclerosis.net Team Member.

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