Post it note

By wb453b

1 min read

I just read a story about fatigue from a gentleman named Devin. If only I could fit that awesome article on a post it note. I would keep one stuck on my forehead with several arrows pointing to it for all to read. This particular symptom has been with me for over two years now. When I say that I mean every day all day. It never lets up. I can finally say that out of eight cylinders I'm starting to run on three or four occasionally thanks to the fifth CNS stimulant. (One at a time over a two year period). I just assumed that this awfulness would pass like a bad flu bug. It never did. I have stayed positive and strong for a long time now never giving up on hope. I have seen a lot of words often used by people who are battling with the horribleness that comes with this disease. Hope. That is the single word that I tell myself every day. It helps with the fight! I even wear that word on my arm now. It is a simple reminder for me to stay strong. I wrote an article in November 2015 titled "lonely and frustrating". Not knowing how long this fatigue would last. Yes, those two words are very accurate in my daily life. Now when I'm asked how "I'm doing " instead of trying to express the daily struggles I just tell them to ask my 7 and 8 year old daughters. They are the ones who have the hardest time understanding why daddy can't do the things that he used to do with them a couple years ago. I am very thankful for what I am still able to do. Believe me I realize that there are many many other people in this world who are not able to do the things that I am still able to do. I promise you that there is nothing in life that I take for granted. EVERYTHING I have is thanked for every day. Keep up the good fight!! HOPE!

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DonnaFA Member
Hi Ken, thanks for sharing your thoughts with us. We're glad you're here. Please know you're not alone, as you've seen between the site and the <a href="https://www.facebook.com/MultipleSclerosisDotNet/?fref=ts" rel="nofollow">Facebook Page</a> many of our members suffer from fatigue. We may not be able to fit the article on a PostIt, but please feel free to share the articles that help bring understanding. We're sending all good wishes and plenty of bright hope your way. -Warmly, Donna (MultipleSclerosis.net team)
Devin Garlit Moderator
Thank you Ken B! The fatigue we suffer on often a daily basis is something that seems impossible to understand if you haven't experienced it. I'm thankful (though I wouldn't wish it on anyone) that others like you understand when I talk about it. You are absolutely right about hope. While it's hard to think about when we feel so rough all the time, the truth is, this is a great time for hope in the MS community. Science is making huge strides. I think about how many medications we have now compared to when I was diagnosed, it's almost staggering. There are many more on the way. New treatments like Stem cell therapy are also being tested. Medications aside, those of us with the disease are able to communicate better through things like social media. That may seem trivial to some but that makes a world of difference. Being able to talk with other who understand and learn from each other is a massive breakthrough that I think doesn't get the credit it deserves. This is indeed a time for a lot hope, and as long as we have hope, we can't be beat!
joannmaxwell Member
Both Devin's original post and Ken B's response are so very right! I was a high octane kind of a person, now I need to rest after almost every kind of effort. Hope and focusing on the little daily victories are the only answers!
stephanie417 Member
First of all, I want to say thank you to all of the individuals who have shared their stories. I've been living with MS for 23yrs. I was only 15 when I first developed this disease. I have many loved ones who are there for support. For that I'm thankful. However, it's impossible for them to understand how I feel mentally and physically even tho they say they understand. At times I don't even feel like the same person I once was, even tho I know I'm in here somewhere, right? I have to be... When my fatigue hits harder than other days I feel like I'm looked at like I'm lazy. When my brain gets foggy I feel like my family thinks I'm just dumb. When my pain spikes I feel like I look weak. I've never been told these things it's just how I feel. So, I find by doing so I push myself harder and harder and we all know that doesn't help. Why do we do things that make things worse? If anyone has a way of explaining this illness and symptoms with success please let me know. I know I'm being heard but not understood? Thanks Stephanie
1. wb453b Member
 Hello. Those are some of the questions that I ask myself as well. I have been able to answer many of the same questions that you mentioned. You are right when you say that people " understand ". Nah, they don't have a clue. When I respond to questions like that I say that I can " relate". Just remember that there are billions of people on this planet. EVERY one of them are unique from one another in some way. Some ways are significant some are minuscule. Just try and smile as much as you can! you are loved by so many!

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