Comic: All the Irritating Things That Come with MS

By Brooke Pelczynski

Last Updated:

1 min read

What are the most frustrating things that happen with your MS? Brooke shares some of her biggest pet peeves in this comic, from bladder issues to spilling drinks to the #1 most annoying comment she hears: "Are you okay?!:

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junaej Member

The most frustrating thing MS has brought on to my life is; 1. In 2016 I was diagnosed with the JC virus and I feel since my neurologist took me off the Tysabri I have gotten worse, because we couldn’t find a medication to control the stupid RRMS . I was diagnosed with RRMS in 1998 and SPMS in January 2020. I’m now wheelchair bound and unable to get out of my apartment to do anything I’m doing a lot of soul searching trying to figure out my purpose in my life but I have been told I am such an inspiration because whatever knocks me down I find a blessing and I never complain about anything I am grateful for everything I have learned in my life and continue learning and I am grateful I started a gratitude journal when I my mom and dad passed away I wasn’t going to live with major bereavement disorder.
1. louisa Member
 
 Were your JC virus results not in that ‘lower scale window’ where you could still take the Tysabri infusions?
2. Therry Neilsen Member
 
 I'm sorry your vibrant. Art life has been derailed. One of the hardest things to do is to relearn ways to express yourself when you've been accustomed to doing it in the way you learned wheen you started out. But is there another way you could make art? If your fingers won't hold a brush or colored pencil can you work with a buddy to choose existing pictures from magazines or books and put them together? I'm thinking of what Henri Matisse did with scissors and painted paper when he got old. Your brain knows how to make .meaning visually. It's the execution that's tripping you up. You can't do it as you used to, but is there a way you can still make visual meaning?
colette4 Member

Brooke Pelczynski Thank you very much for your article. I have too many frustrations with MS to mention. But, there's definitely the peeing in one pants problems and spilling drinks, except for me, I drop everything. I pick up some things they end up on the floor or somebody hands me things, they drop immediately. Yes, MS is very frustrating.
1. Brooke Pelczynski Member
 
 Thank you for sharing! Yea it’s so irritating, Switching to plastic cups was a complete life changer 
2. louisa Member
 
 I couldn’t tell you the last time I actually picked up something that was glass in order to drink a beverage. I just don’t go there and risk it.
tony-n Member

Thanks for sharing this, it brought a smile to my face on an otherwise crappy day. “Are you Okay”ranks right up there with “You look good” as the most irritating comment regarding my MS.
1. Brooke Pelczynski Member
 
 Haha I’m glad it helped crack a smile! “You look good” - as opposed to what?! To looking like what a goblin! Haha that would drive me up the wall!
ydecelis18 Member

This was great. I also think it is extremely annoying to be asked "how are you" by people who don't really want an honest answer ("but you look so healthy" is a close second. My response to that is "yeah, I get that a lot" and I make sure to make it clear to them that I may look fine but am not and that I only look OK because I TRY TO!). This brought a much needed smile though - thank you!
1. Brooke Pelczynski Member
 
 To true. Too bad my MS drugs don’t have anti aging side affects as well! HAHA
2. Brooke Pelczynski Member
 
 I’m glad it’s helping people feel good !!!
louisa Member

My answer to ‘are you OK’ is always ‘I’m fine’. Even though they ask, no one EVER wants to hear the truth, that you are definitely NOT OK!!!! Even though you want to scream it every time you are asked! I just smile and placate.
calmbusted Member

Most annoying - my husband and others finishing sentences for me! Just give me time! The cog fog is real. When I pause to find a word, it's not a game of who can finish the sentence first.
1. Brooke Pelczynski Member
 
 HA! Like you are an empty madlibs for people to fill in the blanks ‍♀️
not found

I hate when some, especially my mom start talking about how things they feel are so similar and the conversation leads to listening to them talking about their health problems.... uh, I thought you were asking about ME. Hmmm 
1. Brooke Pelczynski Member
 
 HAHA them trying to relate is not always helpful.
baggie58 Member

The worse culprit by far for this is my hb, who must say it dozens of times each day - as he’s still furloughed so here all the damn time! Bless him.
1. Brooke Pelczynski Member
 
 Fingers crossed your peace and quiet resumes soon!
blackwolf065 Member

People, who aren’t my doctors, no longer ask me if I am ok. This is because I no longer hold back. I know they don’t really care or want to know. However, Some time ago I reached my breaking point and decided if they were gonna ask I was gonna tell. People around here have no idea what MS is or what it does to the body. Even most of the drs haven’t a clue. I was almost refused treatment at our local ER because I have MS and “We don’t treat your kind here!”. So I have gone on a mission to educate people, including drs about not only MS, but the other medical problems I have to deal with as well. My motto is: If ya don’t really want to know, then don’t ask! Because if ya ask, ya will get an education! Even members of my household have started doing the same thing, because so many people and drs around here have the notion that MS is a s*xually transmitted disease.
1. Brooke Pelczynski Member
 
 Ten points for you!!! I think it takes a bold empowered person to tell it how it is!
2. blackwolf065 Member
 
 Sorry it’s taken me so long to find this site again. What it took for me was to spend what years I could talk out of about 64 years of just saying I was ok when I wasn’t. It took me having a major heart attack and after a triple bypass, waking up almost 3 weeks after going to the ER in what felt like a fish tank. Everyone who walked by gauked the entire length of the window until they were passed it. I had no memory of anything, not even how to write or talk but I finally got it understood I wanted the curtains closed. After getting permission, I was told I was on close watch because I had coded 5 times. The only reason I was out of the coma was I started to give up while no one but my caregiver was around. She told me that she threatened to skin my service dog and make a coat out of her if I didn’t wake up. As the staff was grabbing her to remove her, I woke up. She reminded me I had a reason to live after all and yes, I really did hear her. It took me fighting Stage 3 Kidney failure after that and beating it. And while fighting that, I fought the worst case of anemia I possibly could and still survive. They put it like this, if I were a car, my engine would have blown for the lack of oil. My blood had all but disappeared with no outward signs of bleeding or bruising. Found out why and fixed it but my iron was still dangerously low. With a battle between two doctors as to who needed to treat the problem, I treated it myself and returned the iron back to my normal. It was during these battles that I was told that our ER didn’t “treat my kind”. The straw that broke the camels back! I started to educate people. My tired isn’t your kind of tired! My pain level is different than yours! MS may sound like what y’all have, but that’s only because it’s the great mimicker of diseases! I am truly sorry for what y’all are going through, but there’s a cure for what most of y’all are going through! MS was discovered before most of the other diseases and most of them have at least treatments for every kind if not a cure. Not so for MS! Only two kinds have treatments allowed in the USA, and there’s still no cure! NOW BEFORE Y’ALL GET UPSET, this is some of the things that I tell people I meet who want to put me down because they deserve to be pitied. I don’t want pity, but will no longer be put down!
judyc Member

I got this from a fellow @ an AA meeting. When people would ask him, "Are you okay??!!" he'd reply, "Yeah, I'm fine...I'm always fine. Even when I'm NOT fine, I'm fine!" I holler out " I'm okay! " at my house because I'm noisy always dropping, hitting, slamming into things. If my husband doesn't hear that he knows he better come ask, "Are you okay???"
1. Brooke Pelczynski Member
 
 HAHA that's a fantastic solution!
raredarkbeauty Member

I was upset when a gentleman said," You don't look handicapped to me!" I had just parked in a handicapped parking spot when this occurred. I don't have to justify my reasons to a stranger for legally parking where I did. I had a legal parking permit hanging in my window at the time.
1. Janus Galante Moderator
 
 Ooohhhh raredarkbeauty! I read your post and just had to chime in. This is so upsetting! It brought to mind this article, and I thought it was fitting .. <a href='https://multiplesclerosis.net/living-with-ms/disability-discrimination' target='_blank'>https://multiplesclerosis.net/living-with-ms/disability-discrimination/</a> So sorry you had that encounter. You are absolutely right, you don't have to justify yourself...Janus
colette4 Member

Brooke - I loved your pics - they are so absolutely true about how life is or how we feel. I recently had an incident and I hadn't even gone far. My husband was helping me up a little ramp so he could help me over to a bench so I could see what was going on. A woman was staring at me. A runaway grocery car was barrelling right toward me. The woman could have easily reached over to stop the cart. No, she just stared at me and said nasty things as my husband was able to grab the cart at the last second. The woman kept staring at me and saying things as my husband helped me to a bench. I couldn't believe the gall of that woman, I can't even stand up and certainly can't walk so why was she so full of hate!
1. Therry Neilsen Member
 
 <inline-mention username="colette4" user-id="3959460"/> she's a lot more disabled that any of us are, collette.