MS can get just plain weird sometimes. Help others understand by taking our In America Survey.
Life with MS can be unpredictable and downright odd from day to day, due to the wide variety and severity of symptoms.
MS is often referred to as an invisible illness because of the symptoms you can’t see like fatigue, sensory overload, the MS hug, intense itching, pain, and other unusual sensations.
All of these and more can be frustrating to experience, let alone try to explain to someone.
Help us better understand and explain the true impact of MS by taking our survey.
Update: The survey is now closed. Thank you to everyone that participated!
MS is challenging. Most people can’t see that we deal with bowel and bladder issues. They can’t see our pain underneath our smile. They can’t see how fatigued we are because we keep going. They can’t see the new mbness & tingling in hands and feet.
They can't often see our mental anguish either, and if they do, it can be misinterpreted--judgements often overide empathy. Anxiety, depression, worry, fear...the list is long. Best, Debbie (Team Member) Amen, Debbie! Mental anguish is SO REAL! Many judgements are quickly made about us too.😥If I could resign from this MS "club", I would! I certainly didn't order MS!!!!!
On this survey, it asked me what type of Multiple Sclerosis I've been diagnosed with & not one of the choices provided were my diagnosis. I've been diagnosed with Progressive Relapsing Multiple Sclerosis.
Hi
! I just found this article from the National MS Society that says Progressive Relapsing MS has now been relabeled as Primary Progressive MS. So that would be the type you would choose for the survey. Here is a link in case you are interested: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Progressive-relapsing-MS. I learned something new today! Thanks again! - Lori (Team Member)
Thx so much, Lori💝
During conversations I find myself saying every so often, "there was a time"....
In this case, there was a time when I didn't dislike people as much as I do now. Most people can not be trusted 100%. Most people have a phony side. Most people are not loyal. Most people are not REALLY understanding or compassionate. That goes for people we are related to and people who we know as "friends", neighbors.
NO ONE understands the challenges and the misery of Multiple Sclerosis. It is indeed for many, invisible. No one see's the PAIN, the numbness, the tingling, the tinnitus, the eye problems, bowel and bladder problems, weak for a few days, strong for a few days, energy one day, totally weak the next, depression, the frustration.
My neighbor glancing at me with a look of ....I don't know...distaste, thinking I must be a lazy person who couldn't care less about what my front yard looks like because nearly a month ago I went outside, started clipping the hedge on my front fence and had to STOP, walk away, go back in the house and remain there for the next three weeks because I suddenly got very weak, felt like I hadn't slept for a month and fatigue quickly set in and I was stuck in my house for nearly three weeks before being able to go back outside and do something useful.
I hear people say every so often, "I wouldn't wish my pain on anyone..."
Well, I'm here to say, I WOULD!
I definitely would like to have people who are ignorant and judgmental suffer what I go through every single day of the year. Not just with MS, but throw in my arthritis, compression fractures in my spine and IBS. Then, get outside and do what I do at 75....shovel snow, use a big heavy snowblower, climb a ladder, clean gutters, mow the lawn, clip, cut and plant. I certainly don't do these things very quickly anymore and sometimes they don't get done all at once but I make an effort. I think I'll have a t-shirt made up that says, "EITHER HELP OUT OR SHUT UP!!"I can so relate to you! I am 72 and have been in and out of a wheelchair several times. I just recently was started on medication by my neurologist (I hadn't seen one in a few years, just dealt with it on my own) which has really helped with my pain and even my stamina. Who knew?! I stay very busy and try to do as much as I can, but there are many days when I feel like you did in the middle of pruning your hedge--I just have to stop and go to bed for a day or two or three. In the morning, I can't bend my feet due to arthritis, so I stumble funny. Rainy days are the worst as my back surgical area starts acting up along with all the other arthritic joints. I'm one of those people who finds it difficult to ask for help, but I am getting better at it and have a son who is my knight in shining armor. Most days I am happy to be able to get up, shower myself, feed myself and do the most necessary of things myself. My son had to take care of me from the time he was 14 and I was paralyzed in a hospital bed at home after the back surgery. He never complained, doing all the cooking, cleaning, laundry, shopping and taking care of both me and his 5-year-old brother. He still doesn't complain 36 years later when I ask him for help with something I could have done just a few years ago but now find too difficult or because my balance is so bad I don't dare get "off the ground." Still, I'm happy to be as good as I am and pray for those with the more progressive form of MS. I lost both a classmate and a sister-in-law to the disease far too soon. Hi
. People often worry about parenting with MS and how their disease might affect their children. Your son is such a great example of the empathy children can develop from having a parent with a chronic illness. He sounds like a wonderful human being. I am glad you have him at your side. Best of all wishes! - Lori (Team Member)
