Having Multiple Sclerosis Can Be So Frustrating!

I am having a rough relationship with my disease right now!

The past 3 months or so have been the hardest MS months I have had in some time.  Especially the past couple of weeks.  I suspect this is due to the fact that I just made a move to the opposite side of the state, have been struggling with my finances, AND dealing with a dental problem--so my stress level has been high right at the same time of year when the temperatures begin to rise to that uncomfortable level.  Other MSers understand how it feels when the heat rolls in and you just feel less and less like yourself.  Maybe the quiz I took on Facebook that said the idea place for me to live is Finland was on to something, I suspect overheating would be much less of a problem there!

But I digress.  The past couple of weeks I have grown progressively more frustrated by the cognitive problems I deal with in association with my MS (I am sure that getting older makes it worse as well).  I am a smart person, and spent most of my childhood in gifted classes and programs.  The librarians at the local library knew me well as I was in constantly to check out a new pile of books.  There is not much that makes me happier than learning something new and reading books is almost always a good way to do just that.  I was also always a fast reader, often finishing a book in a single sitting if it was so good I couldn't put it down, and they often were.  In my teens and twenties if you handed me a Harry Potter book and I had a free day I would have easily been handing it back, finished, less than 24 hours later.  In the past 5-10 years that has just been less and less possible, and it is worse during high stress and/or high heat periods.  I just don't absorb what I read, I think that is the best way to explain it.  I make it through a paragraph and I see each word, but I get to the end of it and realize I have no idea what I just read.  This was most apparent when taking a test for school last week, I had to read most of the questions numerous times before I felt ready to attempt answering the question.  And I sit here right now looking at the biography of Marie Antoinette I am reading, 10 years ago I would already be gathering dust on my shelf again, but I have been reading it for months because I keep having to re-read parts.  It just infuriates me! 

Another problem I have been having is with typing.  I am calling it typing dislexia, and sometimes typing psychosis.  I will be typing along, and mind you I was never a super speedy typist, typing with the home row and not looking never worked for me, but I usually managed 50-60 words per-minute with few errors if any--all typing hunt and peck!  But now frequently when I look back up at what i have typed the letters in many of the words are jumbled even though I felt as if I typed them correctly while typing.  Other times I will be thinking what to type in my head and look down and see that I have typed a different word here and there, kind of like you do when someone is talking to you while you type and you type a word they say instead of what you meant to type, except it is just me in the room.

But today's frustration is totally outside of me, today's frustration is with the outside world.  I am a fortunate MSer, so far I have the use of my legs--most of the time even without a cane or assistance of some sort.  But because of this, when you use things meant for handicapped people you get looked at like you are crazy, or rude, or both.  Today, after having a lovely root canal I might add, I had to take the bus back home.  When I got on the bus it was rather full and there were no open seats, and though I can walk my balance makes standing on a moving bus quite disastrous.  I struggle with riding sideways (I have become far more prone to motion sickness in the past few years and need to look into a connection with MS, maybe the balance and/or vertigo aspects?), so I asked a teenage boy sitting in the first front facing row if I could please have his seat.  He refused.  I then explained that I was handicapped and he laughed and said I didn't look handicapped, just fat (and I am overweight though I have lost an additional 16 pounds recently).  His friends and some others on the bus found this very funny, thus making this into a scene.  So here I stand feeling a mix of anger and embarassment.  Thank goodness this boy, his friends and the others laughing at the situation are balanced out in this world by kind people.  Two (obviously well raised!) young men intervened and told the boy to get up, and then the bus driver asked him to get off the bus.  All's well that ends well, and no permanent damage, but this has happened before and it just frustrates me.  There is so much good in this world, but in some ways we have such a long way to go!

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Comments 18 comments

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

Oh Valerie, to say you had a bad day is just a gross UNDERstatement. It's one of those times you have to just take comfort in the fact that the day is over, so that you can try to put it out of your mind.

The heat, the cognitive problems with reading and typing. They are totally frustrating. Switching letters gets me the most. Instead of typing "the" I will type hte and not even notice. Typing what I am NOT thinking is also a problem I totally relate to. I typed for a living and although I still type fast, it doesn't mean much if I type the wrong thing. LOL

So sorry you are experiencing reading difficulties as well. I felt a great sense of loss when I first realized my comprehension had dropped dramatically. We all adjust to it, after all it is not like we have a choice, right? So you will continue to compensate for it, but as you probably already figured out, you will always HATE it. (smile)

Of course what bothers me the most are the boys. With that ugly situation there is nothing to suggest to deal with it, except what you just did, getting the feelings out by writing about it. I'm so glad there were some gentlemen on the bus and so glad the bus driver made them get off the bus, but I am so sorry you were subjected to this when you were already dealing with the bus and a root canal AND the heat. UNCLE ALREADY!!!!

I hope you are not in too much pain and that you can cool off, get a good night's sleep and forget this day ever occurred.

When you are feeling better we will have to compare stories about trying to ride the bus with MS! I started having balance problems long before I was diagnosed. I could not figure out why I could no longer ride the bus without falling all over the people who had the grave misfortune of sitting while I stood beside them. Talk about getting dirty looks from Philadelphians while I messed up their hair-dos as I flung my arms and pocketbook in an attempt to keep my balance. I cringe and laugh just thinking about it.

You got anything you can watch or read that will make you laugh? This is the time to turn it on, or open the book and read it. Or if you can call someone who sees the humor in things after sympathizing with you, this is the time to make the call.

Hang in there and I hope your night is a peaceful and relaxed one!


Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Thanks girl! I plan on watching The Princess Bride tonight, it is my go-to crack me up movie! Abd I am sure the vicodin the doc gave me will make me feel lovely after that! We definitely must trade stories at some point. I ask for a seat now because I made new friends the hard way by landing in people's laps on the bus numerous times!

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

Good, I'm glad I read this before I turned in for the night. Glad you have the pills and the movie you need.LOL

I have another suggestion that I will make off line tomorrow. I'll e-mail you about it. Also I did take note that you moved, I just forgot to mention it in my first reply. Are you settled in or do you still have unpacking to do? If so, let it wait, ok?

Very funny about the suggestion you move to Finland. Might as well as suggested Alaska, at least it would be closer right? LOL

Talk to you soon Valerie! Have a good night!

Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Looking forward to your email. :)

I am actually all unpacked, thank goodness! My office is still in disarray, but so be it!

I actually considered Alaska at some point...for the cold and the ratio of men to women. :)

You have a good night too!

Connie Smith profile image

Connie Smith 7 years ago from Tampa Bay, Florida

It is unfortunate that so many young people have no manners today. Still, I am glad that you were able to see that there is still some good left in the world and it does seem to balance itself out. Since that is the case, tomorrow is another day and it can only be better!

Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Thanks Connie! I try to view such experiences as a good way to witness good behavior in people that have that in them. :)

Connie Smith profile image

Connie Smith 7 years ago from Tampa Bay, Florida

Hope you are having a good day today, Valerie!

Kim Walker 7 years ago

I was going to comment on your cognitive issue, but I can't remember what you said - I'll have to go back and read it again! (ha-ha) I can relate. My balance is pretty good most of the time although I get achey legs. And, any major stresses take me days to recover from. Hang in there, girl. Maybe we should carry around MS informational brochures to give to those who don't get it. Or maybe buttons that say "I just don't get it!" By the way - I'm Kristen's step mom and I was diagnosed 5 years ago - it explained a lot. One day at a time.

Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Thanks Kim! Nice to meet you! And I agree 100% with having an MS diagnosis explain a lot! Riding the bus in Culver City was a worse nightmare than here since they are always full of people.

Oh, and Connie (and the rest of you), thanks, today is a MUCH better day!

EnrapturedFlame profile image

EnrapturedFlame 7 years ago

I'm glad you're still able to maintain an upbeat attitude despite the disrespect you received from the teenagers on the bus. I'm very sorry that happened to you. I am often shamed by how our next generation treats elders. But you are definitely right, there are decent, caring people out there too :)

Lillyannae profile image

Lillyannae 7 years ago

Wow..reading your blog, I thought I had writen it. the problem with reading and typing, heck just standing.

I am new to the blog, And look forward to getting to know all of you,

Do you know how I would go about starting a topic off?

Thank you and glad your day today was far better than yesterday

Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Thanks EnrapturedFlame. :)

Lillyannae, welcome! There is a link at the top of the page that says "Start New Hub" and then it walks you through the process. :)

LondonGirl profile image

LondonGirl 7 years ago from London

Your poor love! Hope you feel better soon, and don't allow the little bastards on the bus to get you down.

Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

Thanks. Today was a good day, I said money be damned and cranked up my AC to have a nice cool day! Tomorrow I need to take the bus somewhere, but plan to take my cane, not necessarily for support but more in case I need to knock any rude young men out of their seats!!

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware

Hi Valerie,

You can't beat those cool days, glad you treated yourself.

I hope you have a totally uneventful bus trip this go round and will not have to knock any heads. LOL I hope you received my e-mail?


kathavfm profile image

kathavfm 7 years ago from Stourbridge UK

How fabulous to have it confirmed that my typing dyslexia is not unusual. It's so frustrating when it sometimes takes as long to correct a piece of text as id did to type it in the first place - maybe even longer. I used to play the piano too but now I can't bear the frustration of the resultant dischord !

So far I've been able to take in most reading matter but sometimes I start to freeze up so much with brain fog that I become slower and slower until I stop.

I like you can walk and generally look well ("MS? - but you look so well"-grrrr)

Came her from your aging hub page which I also enjoyed enormously - and empathised.

Violet Valerie profile image

Violet Valerie 7 years ago from Westminster, Colorado Author

I am also relieved to know the typing issues are not something that only haunts me!

Bear 4 years ago

Hi guys,

I drive, but take the bus to work because gas is to expensive for my blood. There are a few thing i've noticed lately.

A) my balance just sucks,it sucks so bad that the other morning, i took out a prro woman while standing on the bus. thankfully she was there otherwise i would of went out the window, holding on is not an option as I have weakened limbs and reminents of a shoulder injusy from when i was 13.

b) my typing... I'm a IT technician and live on a computer, mine, my users always in front of one. the typing issues are becoming an annoyance, and got me in troube once because of the following setence...

Ass you have received your laptop, i'll go ahead and close your ticket.

Can you spot the error? My boss did and I was in some trouble that day. Sometimes spell check picks up the errors, most of the time it does not because i'm typing REAL words. I totally understand your frustration. ;)

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