We have had post's like these before, but I think it's been awhile. So, let's get to the nitty gritty here... What is MS like for you?
I want to know the good, the bad and the ugly.
Why? Because, we all learn from each other! We lean on each other! And we care about each other! 🤗💕👻
The good - I have met all you guys. Also I now know that I am stronger than I thought I was. My faith has grown.
The bad - I can’t play soccer with Harry and Charlie. I can’t ski, rock climb, be independent, drive a car, run, walk Razor my dog, etc, etc, etc.
The ugly - Don’t Enjoy food any more, can’t enjoy a drink, and going on holiday is a real pain, no motivation.
The good - I also met this family.
The bad - I am not sure, I am sure there is bad there, but I would rather not look for it.
The ugly - Trigeminsl neuralgia
Refined my list of what's important -good
Challenges that are met no matter how small-also good
Being tested-good, even if I might not see it that way at the time.
Finding new ways to do things-good
Talking to you guys-good
Frustrations-Bad
Anytime I have taken any frustration out on anything or anybody.
They don't need to pay for my problem.-UGLY
Besides, everyone has their own set of things they have to deal with.
“I cried because I had no shoes until I met a man who had no feet”
― Helen Keller
That is beautiful, you really made me think 🤔
What is MS like for me? MS requires a Mind Shift, Mood Stabilization, Many Solutions, take your pick. I am forced to look for the good. Or the bad and ugly will drown me.
Humans have a negativity bias (according to Rick Hanson, for survival we have needed to be extra sensitive to danger) I have a very strong negativity bias for whatever reason. It is hard work for me to stay strong, positive, even optimistic but it is vital. MS makes me focus on gratitude and health. I don't take anything for granted anymore.
the good-family support
the bad-my moods when i can't do what i want
the ugly-my behavior when i can't do what I want,it is not pretty!
Great question, Jes. I have so very much for which to be grateful. While I, like others, have lost much, I have gained this family. I believe my own family struggles to “get” it. Only a couple people do. Until you walk in my shoes...etc. or shuffle as the case may be! The list is endless of things lost, but why focus on it? It is what it is! I can see and hear. I get down sometimes, but so do folks without MS.
The good - I’ve learned to embrace change or accept help in order to make myself more functional or my day “easier”, although none of this is easy.
The bad - there’s a wide range of symptoms , and it varies every day. It use to be predictable or the same symptoms every day.
The ugly - personality changes and memory loss. I’m afraid to talk to people.
What it has been like for me for 25 years has been both good and bad: the invisability of my disease. The good: up until 2018, I didn't even use a cane. So no one knew I had any physical issues. Not even my neighbors who I was expecting would call the cops on a drunk woman staggering down the street in July 2017 when I'd walked about 10 miles round trip in 100 degree heat, LOL!
Then the bad part is when I really DO need help, no one can see I have physical issues so they won't help. And at times I've said I wish my hands were cut off, rather than being vibrating flippers because they would then know why I drop things, I can't get seatbelt clasps closed, or flip a pancake!
I have much more function in my hands than your vibrating flippers, and they infuriate me! Do you use any assistive devices to help you? I’m not sure what could help you clasp things, but I know there are utensils made for Parkinson’s sufferers...very curious what else is available for us 🤔 or maybe there’s therapy I don’t know about that could help 🤷♀️
After the first 6 months of being scared, a MS diagnosis has brought peace of mind to me. Prior to diagnosis, I was so tired, with brain fog, pain in my legs that was put on ostheoarthitis. My primary care physician kept putting it all on menopause, but I knew something else was wrong.
Now that I've been treated for 2+ years, I feel so much better. I am mostly back to being myself. Yes, there are new limitations but they're nothing (yet) compared to the fatigue, the need to sleep 12 hours/day, the stress to not being able to perform at work.
So MS is scary, but manageable.
The good: I really have realized many blessings. My faith has increased tremendously as has my relationship with God. My family and friends have really been there for me as I have deteriorated physically. The bad is I sometimes have a hard time accepting help after years of being the caregiver. The ugly is mostly me when I don’t accept the hey I know I should and end up falling or getting hurt. All in all MS has been more of a blessing than a curse for me. I figure I would have eventually gotten where I am without MS, but I would never have gotten where I am spiritually or in some of the relationships I have without MS. I wish I were physically more able, but that is not the case
I have learned what is really really important to me like family, friends. I love to spend time with them and would rather have more time than more possessions. This is good, and I have always held that belief. Except now, it's more pronounced. Also, I rarely say that I will get to something tomorrow. I always strive to do it now, if I can ~ with much planning! This is the good!
I regret not being able to do things as easily as I could, but only a bit. I have found that with a bit of change, I can accomplish mostly anything. I just need to remove the barriers that I have imagined. Careful planning and adaptability is key!
The ugly ~ I have so much that I still want to accomplish that it makes my teary thinking that I cannot do it all ~ but I will certainly try. The fear of what might become is certainly ugly to me.
Keep Smiling 
The good: this wonderful group of people I have adopted as family. Love you all! I discovered my Button Art.
The bad: not knowing if something new is MS or something else. Early on my kids said I blamed everything on MS because I was discovering why I felt (insert here) and realized it was part of the MS and I wasn't going nuts more than I already am.
The ugly: because of the last sentence I no longer can talk to my family about my pains, fears, etc as they thought I talked about it too much. (I wonder how they would be if diagnosed with an incurable disease.) So except for here I have no place to talk about it.
Thank you all for listening.
Forgetting you have MS
Introducing MS self to you
