For the past few weeks our Blogs have been focusing on the topic of social wellness. Some, like You Shouldn’t Be Parked There
by Teisha Rose
, talks about the challenges of having a social life with MS and society’s perception of what being disabled looks like. An issue many with MS struggle with…..“But you look so good!”
What is the one thing you would like people to know about MS?
Maybe just that my mind is playing tricks on me, or am I just wanting to remind myself, or just that I am old enough(giggle) to know that it doesnt matter what THEY know, just what I know is true for me. Most of the times when I have wanted desperately for someone to know what is going on is when i have been in denial and unwilling to see what is going on, like denial makes it go away. Now, just observing what is going on makes it tolerable and easier. Someone once said that resistance causes persistence, the more i dont want something to happen the worse it gets, and like the famous four said, "Let it be".
That MS is a part of me now, and if some days I'm talking about it a lot, it's no different to me then someone talking about their hair or clothes a lot. And just because I have MS now doesn't mean thats what defines me. I'm still me, just with a new branch of my life growing, not a whole new me.
It's a daily fight sometimes. Some days I can do an 8-hour shift standing on my head and do grocery shopping afterwards. Other days I'm lucky if I have the balance to get a shower. Simply put, there are so many invisible symptoms that "normal" people don't see, so please don't assume that because I have MS that I have to show my inbalance, my fatigue, my bad memory, to prove I am sick.
This speaks volumes! I appreciate you sharing this.
I found that if i can remember that it is none of MY business what people think of me MY expectations of myself will be manageable, realistic and MY disappointments fewer...simple but NOT easy!!
I would like people to know that when they ask me, "what's wrong?," it's not always easy to explain. In fact. “what's wrong” is most often impossible to explain.
About two weeks ago, one of our granddaughters sang at a local rock concert. I couldn't attend because the inside of my forehead was tingling. That's right, it felt like my brain's frontal lobes were receiving electric shocks from the inside of my skull. That's an easy symptom to explain!
Since that time, my positional awareness has degraded. I've always felt that I was keenly aware of things in my vicinity and my own position in relation to them. Years and years ago, when I played ice hockey, I was not only keenly aware of where the puck and all the players were; but I could anticipate what might happen next.
Also, when driving a car, I formerly felt that I very accurately knew the position of my vehicle in relation to those around me. As on the hockey rink, I've been confident that I could anticipate potential future trouble on the road.
Now that positional awareness is degraded. Degraded not to the point at which I feel dangerous while driving either my car or my electric wheelchair; but, rather, to the point where I continually feel less connected to the world around me. It’s as if there’s a slight, almost imperceptible, discontinuity between the outside world and my MS brain.
When I reach for a glass of water I sometimes spill, not so much because I'm clumsy (which I am); but more because I'm not exactly sure where the glass is in relation to my hand.
Those are yet more symptoms that are not easy to explain to others, are they?
Then, there are the hundreds of strange sensations I feel every week, every day. Sometimes it feels as if someone or something is touching my face. Sometimes it feels as if a portion of my face is swollen. Sometimes parts of my body are numb, except not exactly numb, since I can still feel things; but I don't feel those things like I should. Sometimes it feels as if the roof of my mouth is hyper-sensitive. Sometimes I have phantom pains in my legs, arms, feet, shoulder blades, hands or teeth. Sometimes it feels as my nerves are on the exterior of my skin to be jangled by the lightest touch or breeze.
And how to explain the spasticity that afflicts me every night? It's similar to, but different from, a cramp. It's like a painful, slow muscle twitch in my left calf, ankle and foot. It produces a burning sensation that makes even the pressure of a light sheet an unbearable weight on my affected limb.
Even my long-suffering neurologist has a difficult time relating to these symptoms. So, how can I explain such things to a person whose life is blessedly free from MS?
Yet, this is all part of my disease; these things are what's wrong. All things I find impossible to explain even to those wonderful souls who sincerely wish to understand!
Buggadog66, I struggle with this in my personal life too - seems so simple yet it's not!
I wish people closer to me understood MS a little better. They understand that I have good days and bad days but they feel like on the bad days I should push myself a little harder thinking I will feel a little better if I do. They do not realize no matter how much I explain it to them that this is the best I can get this day and that I have already pushed myself to get here. They do not realize I push myself everyday. I do not let MS control me. If I can do something I do it. If I can not I do not because I do not want to hurt myself. I also want people to know that when I am invited to something and at the last minute explain I can not come it is not because I do not want to be there because believe me if i could I would. This seems to really upset some people even though when I say I will be there ai always discuss this possibility with them.
I want people to know that I have good and bad days, I have good and bad moods, and some days I function better than others. On the outside you can't tell I have MS, but if you were to walk a mile in my shoes you would know what it feels like to have an "invisible" illness. You would know that I hate the shots I have to take 3x a week, the medications I take 3x a day, the chemotherapy I take 4x a year. I hate that I sometimes lose my balance, I hate dealing with incontenance, I hate the brain fog and cognitive deficits, I hate having people tell me how I can "cure" my MS. Yes, I do hate all these things, but this is the weight I have to bear and I would like it if you could just be supportive of me.
We have to be supportive of ourselves because in reality, the people we know will never understand all that we deal with because they do not have MS!! And if some idiotic jerk tells you "how to cure" MS....tell that person just how ignorant they must be to even say something like that! Speak up for yourself!!
Irrational thinking, balance difficulties, and faulty memory.
That being in a large crowd or a big place can make me unable to focus. Not to think that I'm not paying attention to someone who's trying to have a conversation with me it's just that I can't focus and process information with so much background noise.
I use headphones at work to help me focus and tune out all the noise in the background. The fact that we were told that headphones are not allowed in the work setting is very bothersome. Also, it's frustarting conversing with people and having difficulties communicating when they have no idea I have MS. Thank you for sharing!
MS has ruined my life.
11-years ago it showed up and devastated my life.......very advanced and massive
amount of lesions in brain & spine.
7-months of Chemotherapy with steroids while once per week injections at home.
Had to stop working & college.
Then about 5-years ago my girl, out of the blue, sat me down to tell me........
"you have to move out (of HER home) ...........I can't put up with your medical crap
Forced to panic-sell tools, fabrication equipment, welders.....and a 1956 Ford F100
pickup street rod project I spent 2-years collecting new parts for AFTER I was diagnosed!
Not to mention a bunch of MY "stuff" I moved in with......
Still trying to recover.......
Hey, sorry that happened to you but "your girl" showed her true colors. You're much better off without somebody like that. Time doesn't heal all wounds but it does eventually make it easier to deal with the uglisness of some of our experiences in life.
I would like others to know that MS is unpredictable, unknown prognosis, and VERY different for each person.
If I share that I have MS, I always hear, "my Grandma/friend/coworker/second cousin/neighbor, someone I met in grocery line has MS too."
Followed by what that indivual can or can't do; run marathons, you can't even tell they have MS, they read diet book and now are healed, still working, not working, walking, not walking......
I think there is a hidden assumption of , "you will be fine because so-and-so is fine".
I understand they really don't know what to say and do their best. I'm less hard on others with their reactions, because they don't have it or really "get" it.
Still, your 99 year old grandma is running marathons? Please DON'T share.
I would like people to know how I recovered from all the symptoms!! After diagnosis 50 years ago, I found research proving myelin heals with movement and I've been dancing ever since! Times I was immobile, I visualized until I felt movement stirring. I have been sharing this research and my success for half a century and few get the message!! My MRI 1995, has too many spots to count and was interpreted to mean that I require 24 hour care. I am now 73 years old and travel every chance I get. Also do Tai Chi twice a week.
I have MS and it hasn't gone anywhere, it's still HERE.
Nearly 20 years since diagnosis, anxiety has taken more of a front seat. For example trying to explain, trying to ask for understanding how I need communication to happen in certain situations at home, with friends, loud places, with distractions, finishing sentences, I need 2 way engagement for retention and can't intake multiple points or tangents from a topic and recall a single word...
That very small needle has become very threatening to me. I may need some alone time or calm time to destress.
By statistics I'm very lucky, but MS is still there and it is still messing with my life. It is me, it is my personality. Like politics, religion, and other affliations may drive portions of someones personality my MS drives my personality every day.
When I ask for help, I need help.
"But you look so good" has made me angry although their intentionns were mostly meant to be uplifting the expression to me is more than benign. They may not know MS but I do everyday from sunup to sundown it is not so good nor do I look good beyond what they can see. Inside I hurt.
NMSS has put forth a plethora of publications to help everyone develope an understanding of MS to further their experience and mine provided I set aside my feelings and open myself to their compassion and benevolence. I should not be so critical; they mean well.
Part of life is to teach and be taught, to give, to take, to be thankful in all matters and situations we encounter. Attempting to socialize MS into social obligations is fraught with risk. Do I put on my "look so good" face, or dispell the myths, or entertain the truth with alacrity?
I would like prople to know bladder and bowel problems are a mess making for embarrassment and clean up. It's bowel and bladder 101 again. Will someone help me? Thankyou for telling me how good I look. Ten minutes ago I had my head buried in the toilet puking my guts. Raise your right hand to swear an oath. Sorry, no can lift.
I would like people to know they can engage me in conversation, ask me anything, be prepared to hear the truth.
I would like people to know I am afflicted with MS but please treat me equally without reservation. I am one of you.
I would like people to know I hate MS and would not wish this on anyone friend or foe, it is something you don't want in your life.
Furthermore, set the example of your strength, determination, resilience, affirmation of self. Don't quit now, we have a ways to go.
I have MS. I also have a life.