MS Sucks, but I’m Trying to Stay Positive

Stephanie Towler avatar

by Stephanie Towler |

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Since my diagnosis in 2012, I have tried to look past the negative aspects of multiple sclerosis and maintain a positive outlook. However, I realize that staying positive is not easy. I’ve even received a comment on a previous column about how the narrative of “focusing on the positive” can be harmful. I’ve also encountered similar perspectives in MS groups on social media.

I agree that having MS sucks and that we should also deal with our negative emotions. I’ve found that some aspects of this disease are worse than others. The following are my biggest challenges:

MRI scans

When I was going through the diagnostic process, I had many MRI scans. I wanted to cry and scream every time I had to lie in that tube of death. Having a cage secured around your head is crazy enough, but to have to lie perfectly still and endure an hour of loud banging is ridiculous. You mustn’t move or twitch, or the technician might have to repeat that section of the test. I want to meet the inventor of this machine and ask why they had to replicate the experience of being buried alive. I have had 29 MRIs so far, and the procedure hasn’t gotten any easier for me; my loathing for the machine merely grows over time.

Fighting fatigue

As many know, fatigue is a common symptom of MS — and my worst enemy. Fatigue made college incredibly challenging, and getting to sleep at a decent hour and attending classes while fighting to keep my eyes open was a daily struggle.

It’s embarrassing when you work all day, and afterward, your fatigue is so severe that you have to take a nap in your car before driving home. Making plans after work wasn’t an option because I could barely make it to the car. I worked at a theme park, and my co-workers would stay after work to go on the rides. But I couldn’t. And energy drinks and caffeine pills were useless.

Cognitive testing

Before my infusions, I had to complete several cognitive tests. I’m horrible at math. One test consisted of listening to a recording of a voice repeating numbers. I was tasked with adding the numbers and then a third number to my answer. I could never get it. I would hear the first two numbers, and then I’d be lost. I didn’t understand the point of that test and felt as if it was just entertainment for my nurse.

Staying positive can be a challenge for some. I find that it helps me to keep an upbeat attitude, but others may disagree. Multiple sclerosis is painful, and I have cried on many occasions. Sometimes I feel angry and ask, “Why me?” But at the end of the day, I have to suck it up and deal with it.

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Comments

Christopher R. Huber avatar

Christopher R. Huber

hello i'm 57 and just got diagnosed with ppms. I can remember symptoms as far back as 20 yrs. ago staying positive is not easy I mean how long do I have to live anyway. But I'll try but it sucks falling down all the time,
fatigue, depression(although that's not new), anxiety, and on and on it was better when I didn't know then I was just lazy. but once more into the void. Chris

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J. Howell avatar

J. Howell

"Since my diagnosis in 2012, I have tried to look past the negative aspects of multiple sclerosis and maintain a positive outlook. However, I realize that staying positive is not easy. I’ve even received a comment on a previous column about how the narrative of “focusing on the positive” can be harmful. I’ve also encountered similar perspectives in MS groups on social media.

I agree that having MS sucks and that we should also deal with our negative emotions. I’ve found that some aspects of this disease are worse than others. "

Are there positive aspects to having MS? ;)

Focusing on the positive in and of itself isn't harmful, unless it's false or unrealistic positive and/or ignoring the negative. Being positive but also realistic seems to be the best course to/for me.

That said, so far the course of disease has been gentler on me so far than it has been for a lot of us- my brother included. It sucks, but it could be a lot worse. I try not to forget that when it becomes particularly frustrating.

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Pik avatar

Pik

I feel ya. Monday leaving UPS store,stubbed foot,collected myself & woman asked if I'm ok.She held the door& i said "this is what it's like to have MS.It sucks." As far as MRI,once i moved,had start that sequence over.Uggh! Get Brain seperate, then C&T spine another day because of Contrast injections. On 6/19 MRI on C&T spine is too much. Noise& vibration over time is painful in my head & back. I'm going to have to do them all seperate. My head just can't take constant noise like that. My first diagnosed MRI'S in 2013, done all 3 at once. 1 hour 45 minutes in the coffin not able to move. I feel ya!

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David Doyle, MD avatar

David Doyle, MD

Stephanie, I recently read an editorial, I think it was in the Washing Post about Mr. Rogers. He would tell his audience that you should try to do the best with what you have, and feel good about yourself. We are continually our worst enemies,comparing ourselves to what we were capable of before (and feeling depressed!). I'm 72 and walk with a lot of difficulty, and had late onset MS. I'm glad for what I still can do!

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Arloa Raffler avatar

Arloa Raffler

Hi, I am 72 also and had late onset diagnosis . I have trouble walking, and leg jerks, tired, bladder problems. I have to also look at what I can do, not what I cannot do. I work where there are a lot of handicap children. They are struggling and only children. keep your chin up , lift your heart up and smile. Everybody needs a little positive. Makes me feel better and those around you.

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Matt Ferko avatar

Matt Ferko

Hang in there Stephanie!

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Liz Hassel avatar

Liz Hassel

I have been dealing with MS simce 2001.
I am an organism, like an elm tree that has dutch elm disease. I can't ask "why me?" Without asking why them? Or why not me?
I have to work harder, and that is hard

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Mark R Dennes avatar

Mark R Dennes

Yes it does suck but eventually you'll adapt. I have declined all the expensive treatments and gadolinium infused MRI's which neurologists frown upon. I do take 50mg of monocycline when I feel an exacerbation coming on and it works for me.

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RP avatar

RP

Hi Stephanie,
I read, enjoyed & appreciated your column about “focusing on the positive”, well done!
Luckily for me I’m not claustrophobic so no issues for me getting a MRI, we do however share in the fact that fatigue is our worst enemy.
I’ve been a member of the PPMS community now for 22+ years, I have had & continue to have my share of ups & downs, positives & negatives along this ever so adventurous journey with MS as my constant companion.
I think that you’re correct and I completely agree about keeping a positive attitude!! for me it helps with everything we (us MSer’s) have to deal with. It’s my opinion that negative emotions are something that everyone has to deal with because of MS or what ever the reason may be, but that is no reason not to try to the best of our ability to keep a positive attitude.
Regards,
RP

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Karen G avatar

Karen G

Thank you for your column on your MS journey. It is a difficult one and different for everyone. Having PPMS, I try to focus on what I still can do and not what MS has already taken. At times, particularly when exhausted, it does sound like you are struggling, but overall you are still doing great! You are able to work, drive, walk. That’s pretty awesome! Try not to think of your lack of energy after work, think of how you got ready, drove yourself, and worked all day! With MS. You go girl!

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Jane avatar

Jane

Your column reflects my experience of the feelings that consumed me when I was newly diagnosed exactly. It was the cause of a very deep depression but did improve with medication and talk therapy with professionals. Anti anxiety medication before MRI now seems routine. It would have helped to know that cognitive retraining was available before the torture of cognitive testing. Learning how to conserve energy and to say no when needed helped me accept my new “normal”.

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Daniel avatar

Daniel

Stay strong, Keep the faith. The tube does suck and it doesn't get any easier. Just remember they say its not the size of the dog in the fight but the size of the fight in the dog that matters.

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Ken Pitt avatar

Ken Pitt

Hi Stephanie

I too take a positive outlook everyday. I could always have a relapse or worse and I think staying positive has helped me greatly. I was nowhere near your age when I had my first attack (52) and not sure how I would have dealt with M.S. at that age, but I look at everyday as a gift, a day that will last a great deal longer. There are many illnesses that are worse and when put in perspective it makes M.S. that much easier to deal with. Best of health to you, thanks for the article.

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Micheal Anthony carney avatar

Micheal Anthony carney

I had a stroke and I lost my left side I have been left with drop foot I bought a lot of device s on line but no good I would to try the fes to see if it would work it has been 6years with no walking it’s very hard you cannot get the fes in Northern Ireland on the nhs it’s my last chance I always give to help any charity if you can help in any way I would be great fulyanthony carney happy Christmas to all

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Pik avatar

Pik

Yes. People don't realize MS & constant pain our body consumes. Some days it makes me irritable. My 1st MRI'S I done Brain,C&T all at once,1hr40min in the tube. Yes, if ya move,start sequence over again. Then i done Brain one day,C&T another. This year gonna do all 3 separate days. To much back pain,& head hurts so bad from constant noise. Recently had a walking spastic foot stumble,lady asked if i was ok,held door open&said to her "this is what like to have MS". She now knows. Try & keep on keeping on.

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Tanya Wiseman avatar

Tanya Wiseman

Thanks Stephanie for your column. It made me smile to read . And Im one of the strange people that enjoys having MRIs. As long as I have warm blankets and music playing, I fall asleep and get a much needed nap. I even thought of an escape plan to get out, if the electricity went out or the technicians suddenly went on strike and left me in the machine.

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Catherine Hair, MD avatar

Catherine Hair, MD

I found it more difficult to explain my ataxia and darts for the bathroom or car with urinary incontinence. I have tried to work as a Psychiatrist/ my 33+ Career, as after my neuropsychological testing, I found I had processing speed problems, word finding problems and visual special difficulties, then I found severe cramping up to my chest sometimes sometimes my neck or hands and feet. I never knew what is what; I have a 50% Permanent disability from an antibiotic ( gentamicin) toxicity- it sucks- At first I was falling into the walls , of just slowly down to the ground, did OT for 3 mo, 3X per week and could drive again and the
Opillopsia Sp? - now returns in the passenger seat. ( can’t read in the car, not put makeup on). Ataxia worsens with Anxiety, and Fatigue.
When I move too fast or with feet on even a thick carpet , I crash, because as I fall, My vestibular damage doesn’t not allow me to see where I am in space, and the anxiety is real flight - so I fall like a rag doll, I have had more CT scans and MRI’s than I can count.
Which is it vestibular dx, or is it MS, I see it widen with episodes. I also have severe Scoliosis that reared it’s ugly head around 5 years ago ( first came the vestibular dx in 2005 then severe migraine or meningitis type headaches introduced itself. My pharmacist thought it was Migraine and my pain management doc thought it was MS. Finally, with migraine meds Zoning me out, I was sent to an MS specialist because of the T2 flares in my neck and very faint mm size lesions in my frontal cortex that now number 5 , and with a width of -1.5cm -2 cm plaques and a few peri- ventricular, but no change since 2011. But with each contracted attending psychiatrist position that I took ( I worsens in aspects I thought for cognitive problems, learning a new system every time, but it may have staved off progression). I went from being called a dynamite Psychiatrist for 3-4 weeks, then my needing to stay longer to do the same work then in trying to let the staff and directors know who needed to know, but not given a chance to review MS so that it was understood, then what they would see with me, and what accommodations ( non disruptive room except for emergencies- where I could take the patient chart, do an intake or discharge, or notes and possible changes To the orders if necessary!

The most challenging was simply a patients discharge summary that was professional, non-wordy and coherent, with a beginning middle and end that stuck to a primary and sub-primary issues.

Now, I need to go for surgery first for my DISSSEMINATED OSTEOARTHRITIS ON TOP OF A 40• DEGREE SCOLIOSIS THAT IS NOW AFFECTING MY BREATHING. It can from, an accident 30 years ago.

I’m addition PTSD with pm startle dreams and symptoms Akin to ADD, and OCD. ( the OCD has affected my cognition. ( easily distracted
“ am I doing anything that I think might hurt someone else “, and lateness worsened bad- prob with MS fatigue! I had my last try at school - for a Masters Degree in Alternative Health and Healing, and and Started a part time job in nursing homes ( large charts, busy nursing stations and severe pain- along with OCD-MS cognitive problems made me have to put in resignation due to Health issues.
Prior to those in 2018-2019 I did not work in 2017. My worst experience, ie with worsening back pain and NS symptoms and OCD. I needed a year of OT, ST, OT.
That’s all , between the lines I’m still trying to crawl out of these diagnoses and afflictions with well researched supplements

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Joe Mcginnis avatar

Joe Mcginnis

I’m 55 years old and just got diagnosed with MS. After being treated for pinched nerve for the last few years. I went to my Dr thinking the same but he said he though I had a stroke and send me to the hospital after numerous test including over two hours in the MRI tube and spinal tap the doctors said I had MS and for past three week I read all I could find about MS I really like all the comments because it seems like it affected everyone different I know for me it affected my left side I mean my left arm and leg are num almost all the time except when I like electric shocks down my leg. I trying to upbeat about all this but it’s HARD but I going to do it because I kids and grandkids that I want to enjoy one grandson that was born when I was in the hospital so I just going keep my head up and keep going because that what we do. One more thing I can remember my dad saying everybody has bucket to carry no matter what you put in it are got put in it you still had carry it how you did it was up to you.

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