What topic(s) do you wish others, withou... - My MSAA Community
What topic(s) do you wish others, without MS, had a greater knowledge of – so they could better understand the challenges of MS?
I’d add how inconsistent symptoms can be. It’s hard for people to understand that what is unfathomable for me to do today that I may do with ease tomorrow. Between fatigue and intermittent walking issues, one day may look completely different from the next, but people understandably believe it may be a choice what we say we can do instead of a symptom reality.
MS is such an isolating disease. When I tag along behind someone because although I can walk, I can't keep pace with others, I feel like a burden. When I decline an outdoor invitation because of how heat exhausts me and how the exhaustion lingers even when I am no longer overheated, I see and hear how others respond...and so I fabricate a reason for my inability to attend that outdoor picnic, or concert, or event. I guess this is covered by invisible symptoms and changes in feelings and emotions...but the difficulty lies in how to make those without MS gain understanding. Thanks for the survey. It makes me feel productive.
It's nice to know that others have the same issues. It's particularly bothersome to decline an invitation but have the feeling that the people who invited me are interpreting my refusal as meaning I don't really want to be there and that if I'd just wanted to badly enough, I would find a way to be there. Yes, I "could" do that--but I also know all too well how things would go for me. AND I'd be a nuisance for others once I started needing a bathroom in a huge hurry or going all weak because the room is too hot, or having to have my wheelchair brought in and taken out, loaded into a vehicle, etc.
Those invisible symptoms that run like a roller coaster leave even me confused, but it's even harder to help others understand. That symptoms can change so quickly is a real problem, too.
Trying to understand what is going on myself let alone explain to others what it’s like. No visual appearance of anything wrong. No broken bones, no bandages, you look fine. What is MS. What caused it. It is what it is.
What is the best way to describe MS fatigue, when others say " we couldn't tell"
It’s hard to explain the mood swings from happy to irritable and cranky 🤷🏼♂️ Lack of sex drive and heat sensitivity along with fatigue. People don’t truly understand how much this has changed our life. For the most part we don’t talk about it to others as we are somewhat embarrassed 😞. Yes I have an AFO and sometimes a walking stick but people don’t think MS, they just stare and don’t ask. I really wish more people would just ask. 👍🙏😉🐾 Ken
amen!
When saying “I have MS” I get 3 différents reaction : you are not sick 🤢. What are you saying? Explain what is it?
Basically it’s hard to count the win although I know counting the loss is a mistake.
Thanks John for the survey.
Most people, when I tell them I have MS, they are surprised or they say I have a cousin or other relative that has MS. I walk and I try to look good and so they don't see any signs. Generally I don't have any at least that I want to reveal in public. Also, what does impact me are also typical signs of aging. So if I say I have bladder problems, someone will say, I know what you mean, I do too. And really some bladder problems are a sign of aging.
Last night I was talking to someone and mentioned how difficult it is to memorize music lyrics anymore or a lot of other things, like sometimes, I forget a musical piece I've known all my life. But one older woman said, believe me I too have problems remembering and memorizing .... so some problems are not just unique to MS patients.
John, does MSAA have any publications that one could order and keep on hand to inform family, friends, and strangers about the real struggles those with MS face? I tend to give people a minimal explanation and encourage them to look it up.
mymsaa.org/publications/abo...
This looks like a great one!
About MS is a good one to share, greaterexp , exactly. Another one that is beneficial:
- Winter/Spring 2016 issue of The Motivator, cover story on "Making the Most of Our Relationships":
mymsaa.org/publications/mot...
And of course our Mommy's Story and Daddy's Story to speak to young children about MS.
- John, MSAA
Thank you, John!
Cognitive dysfunction can be as disabling as physical symptoms--and it's incredibly frustrating because it's really difficult to explain. After all, sometimes even the ability to explain something is affected.... Then, if you do manage to explain it, there's that feeling of being less of the person you used to be; especially so because our identity is so tied up with our brain.
You hit the nail on the head with your comment. I’ve had to try to explain why I can’t stay with a conversation for long. I’m not sure folks truly believe me, and I think they can be hurt by thinking I’m just bored or rude.
I have to ask questions when someone is telling me something so I don’t lose track of what they are saying. This is interpreted by the other person as interrupting, which is irritating to them. I just avoid human interaction because I think one word and say a different word, or can’t think of basic words and of course lose track of what I am trying to say. The level of embarrassment is paralyzing. I can’t explain things or remember what we talked about 30 minutes ago. I wish I had known about these problems when I was first diagnosed. In 1999, they told me MS can’t change who you are on the inside. People still believe that! Even though it makes no sense that brain damage doesn’t alter your personality. Your personality is made up of millions of connections in your brain. MS means a limp or a a walker. I am so tired of the world believing that If you don’t have mobility issues you aren’t really sick!
JohnMSAA the responses are hitting the nail on the head. People need to try to understand that ms is a very difficult disease to understand 🤔 Each day is different than the day before. Not only does it affect your brain but your muscles, your eyes and much more. ☹️ Thank you for the ability to voice our situations 👏
The ones that people can't see and have no idea of what you are talking about are the worst. The electrical jolts, the MS Hug, the sensory feeling of something touching you, it's nice to be in a room with other MSers and someone shakes their head in understanding.
I wake up a different version of myself every day. Every relapse leaves me with a new normal to adjust to. Lifestyle changes have been necessary, but some not constant, yet some so drastic I can not remember how it was before this. 🤷♀️
John, it's Fancy1959. What a great post and poll! I believe this has the potential to produce great benefits for both those affected by MS and those who make up the support staff and caregivers for Ms patients. My thoughts follow along exactly with the table results you listed above. I think it would benefit everyone with MS to educate the general public about the many changes that MS forces upon those it attacks. I also think that symptoms are a major key so people can better understand what we deal with day in and day out even though we often times don't broadcast our feet are numb, or our hands have no tactical sensation left, or our bladder has a mind of its own, etc. All our symptoms add up to create the big picture of MS and what it entails. By unlocking some of the mystery that MS is made up of and how this mystery effects those it invades it would definitely be a win-win situation. People affected by MS would win because many issues that they deal with everyday would be better understood and the people who are the caregivers and support staff would win because they would better understand MS and all it entails.
I would also include how environmental changes can impact symptoms. For example, when the weather changes (hot=worse symptoms) can strongly change how we interact with the world.
Another issue is what kinds of things can trigger symptoms. I may walk well when I go into a store, but by the time I'm ready to check out, I need help just standing up. I've found that I have to explain this to people, including doctors - that pushing myself actually makes me worse.
It would be nice to have a 1/2 page list of possible symptoms to keep in my wallet and give to people who need enlightenment. It would be a good thing and eliminate confusion.
Thank you for your suggestion, sashaming1 ! In the meantime, you can always bookmark this page on our website about MS Symptoms if you ever need quick online access:
mymsaa.org/ms-information/s...
- John, MSAA
I am very lucky to have a husband that tries to do everything in his power to make my life easier. Although he works full-time, he has even adjusted his hours to work when I am sleeping. Even with everything he does, and everything he has read about MS he still gets upset when I forget things he said ten minutes prior or when I repeat myself two or three times in 15 minutes. I get so upset that I end up going to my room and isolating myself.
I really try to understand his frustration; he married an Executive Director of Security in one of the largest Hospitality/Casino Industries in the United States. Now he has a wife that can't complete a sentence half the time and instead of working 10 hours a day in 4" heels with a salary well into the six figure range, I can't walk more than 20-30 feet using my cane otherwise I'm in my wheelchair. Oh, all the designer shoes (140 pairs) sold on eBay for less than 1/2 what they are worth.
I'm really off topic, sorry! I just turned 55 a few weeks ago but I can still pass as 45. Most of the time my husband would make up an excuse about why I didn't go with him to an event. Now he just tells the truth, he explains that I have MS and I was very fatigued. If people ask questions he is happy to answer them.
I guess I still have to find a way to help him understand my cognitive issues!! Thanks for letting me ramble John, sometimes that's all I need.
God Bless, Maggie
I hear all the time how important it is to have a good support system. But for people like me for whom diagnosis was more than 15 years after the disease began to cause depression, mood swings, falling asleep even while standing up, urinary incontinence, drop foot, short term memory problems and difficulties with word retrieval, and more, the wear and tear on my relationships was as real as the wear and tear of all those years of living with symptoms. I wish others could understand the need for friendship and support as I keep holding myself up.
People go about their lives and it doesn’t effect them oh well- People have no idea of MS ~ My Son has gone thru anger at me ~ disbelief ~
