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Loving Running Shaped My Attitude Towards My Multiple Sclerosis

Early on in high school, I developed a love for running. I was never the fastest, and I didn’t have “right” form, but it was mind-clearing and therapeutic. I ran for half an hour every day in the afternoon. I lived in an old agricultural labor camp in the Monterey Bay area, so I was surrounded by acres and acres of land that I would use as my personal running track — open for me to use whenever I wanted. I would get tired quickly. I would pant and trip but was oblivious because my focus was on the music blaring out of my noise-canceling headphones. The daily grind of going out every afternoon for my run gave me endurance, so by the time my sophomore year of high school began, I was ready for the track days in my physical education class. When we ran the mile the previous year, I usually was second-to-last, finishing with my best friend who happened to be asthmatic. In my freshman year, my mile times were around 12 or 13 minutes, but by sophomore year, I could run a mile in 8:40. I was happy to finish with that vastly improved time. I could not stop — when I finished my four laps, I had to continue to run until we were set to walk back to the school down the street. But there was a new sensation in my body that had started the summer before, and it was starting to dominate. I had weakness, numbness, and utter loss of control of my legs from the waist down. My knees could bend backward at any moment. When this happened, I had to take small steps until I regained some sort of feeling — any sense of control. This fragile state continued throughout my sophomore year of high school. I worried, but I also dismissed these sensations and attributed them to just being tired. At the beginning of my junior year of high school, I developed ​​diplopia — also known as double vision — for a short stint. My double vision got to the point where I would walk forward with my head facing to my right, and I would veer off to one side and bump into walls. This worried my mother, so she took me to the eye doctor, who redirected us to my primary care physician. My primary care doctor expressed concern and urged us to the emergency room, where I was put on an IV to deactivate the inflammation. I ended up in the back of an ambulance on my way to the Lucile Packard Children’s Hospital at Stanford. All of these doctor and hospital visits occurred in the span of a day. I was taken right out of class and after midnight, I was in a hospital bed. I was utterly confused, but like many other students, I was happy to be absent from school. Just as quickly as I was taken in to get diagnosed, though,  my life changed. I went through many tests and exams: MRIs, lumbar punctures, and multiple rounds of blood work. I was told I had multiple sclerosis (MS), which some people refer to as “the invisible disease.” MS is an incurable disease too. I felt fine as I lay in the hospital bed surrounded by doctors looking down at me and expecting some sort of reaction. Did they expect sadness or maybe anger? I had no idea what was in store for me. In the emergency room, I was immediately treated with an IV, but my medication had intense side effects. The day I got home, I felt like a vampire — light and food both made me feel nauseous. I lay on the floor for an entire week feeling sick. Once that wore off, I went back to school — but even though I was the same in many ways, I was different. After my first class, which was AP history, the teacher told me that he wanted to speak to me after class. He basically told me to leave AP history class. Upon moving into my new history class, I was greeted by one of the best friends I ever made — I just did not know it at the time. He waved me over to sit next to him, and he happened to be the cousin of one of my other friends. This new friend was always super supportive, and he didn’t act weird when I told him about my new diagnosis. I only told a handful of people because I did not want anyone to know. Even then, I can look back and appreciate his reaction because not everyone is so kind and understanding — even the adults in the room that I assumed would be understanding. Without realizing it, I let MS overtake my life. I kept myself busy to avoid facing this new opponent of mine head-on. I was in denial. I chose to hang out after school as much as I could. As class secretary, I was at every event trying to help my class fundraise, and I was always busy during homecoming week. It was the most fun I ever had. Although my MS was not active at this time, I had stopped running because I felt a pain in my calf within minutes of starting to run, and I did not want to provoke or trigger a multiple sclerosis flare-up. One day, I came seconds away from passing out on my way to the office to seek help. The darkness closed around me with every step I took, and that 50-foot-long walk was the most intense and daunting of my life. Looking back, these symptoms were present for most of my life. As a child, I went to the doctor a lot, and my medical file was so big that the doctor would joke about it. I went so often that they began telling my mother and I that I should only come in if my symptoms lasted over three days. Coincidentally, that is what an MS flare-up or relapse is. The numbness in my legs when running was due to MS, the diplopia was due to MS, and every other symptom I would dismiss was most likely connected to MS. My initial MRI showed a lot of lesions — way more than someone my age should have. Also, as a young Mexican man, I was not a stereotypical MS patient, but I still had multiple sclerosis. Thanks to the medication I was immediately put on, I was supposed to have fewer future attacks, but the side effects of that first treatment were not pleasant. I would often get pain in my stomach to the point where only the freshness of the floor against my skin brought me comfort. Hours later, I would get sick. I would be afraid and give up time and time again. It got so frequent that I sadly know to properly get sick and would not fight my nausea anymore. One of the last times this happened, I just let the pain do whatever it was going to do to my body and took a nap inches away from where I had gotten sick. I had a day when vertigo took over me too, and I just lay on the ground all day. I even needed my father to help me to the restroom. At times, I feel like I am unstoppable and invincible, but once my MS decides to rear its ugly head, I become submissive and afraid. I have no idea where my multiple sclerosis will go, but now on my third treatment, I have few to no side effects, and I am able to live a good life. My girlfriend is supportive and loving too. I told her about my multiple sclerosis soon after meeting her for the first time because I did not want to catch her off-guard in the future, and she was accepting and kind. She is always willing to help anyone, is super insightful and smart, and makes me feel as if my MS is not a thing. She makes me feel like my MS does not exist, and I love her for that. Thanks to her support and my family’s support too, I continue to pursue my higher education at UC Riverside, majoring in English and hoping to minor in education. I do not let multiple sclerosis dictate my life and put limits on me. As difficult as it may be, I will push myself to run again, willing myself to face any obstacles that come my way instead of cowering from them.

Community Voices

Join us Tuesday May 25th at 10am CST.

<p>Join us Tuesday May 25th at 10am CST.</p>
Community Voices

I used to be a runner

I used to be a regular runner, and I think one of the worst parts about chronic illness has been having to give that up. Between the joint pain, being too exhausted to run in the first place, and the exercise-induced flare-ups, it's really discouraging.

But I loved running. It was my therapy. It was my time to switch off. Mindfulness before I knew mindfulness was a thing. Time out in fresh air, under the sun, in nature.

So one of the things I look back on and wish desperately to have again is that feeling. The breeze guiding you on and that post-run high.

I think if I really wanted to, if I wanted to make it a priority, I could run again. I could gently work my way back up to my weekly 30k. I think motivation and beating that discouragment that comes as a result of trying and then spending several days down for the count are factors that can be overcome.

So I decided to sign up for Dubai Run, an annual marathon that allows you to choose your distance. A socially distanced community event. The run this year allows you to take your dog. Yes! Again my dog is my saving grace, a source of motivation (she is a sighthound, born for running, and needs more activities like this). And the 2k dog run is easily achievable with two weeks training.

And I'm hoping that I can find space for this in my life again. Because I think once I get over that initial hurdle and ease my body into running again, that it will be ok, and it will help me. And I can be that girl who runs again.

#iusedto #Running #exerciseintolerance

9 people are talking about this
Community Voices

Just Imagine

<p>Just Imagine</p>
5 people are talking about this
Community Voices

I ran. And then I ran some more.

Yesterday's run was nearly self destructive. I was anxious and annoyed bc my husband's ex-wife decided to drop by unannounced to see my two oldest (they are biologically his and hers but as far as we are all concerned she was a surrogate and they are mine. It's a long story...). Her arrogance precedes her and it usually sends me into a tailspin bc I have to swallow my anger and annoyance and act as though she doesn't bother me.
Well, that backfired and I am notorious for doing punishing things when I'm upset...like going for a run in 100°f fu¢k!n weather in dark clothing. By the time I got home I could hardly breathe and on the verge of passing out and throwing up. But at least I wasn't thinking about his Ex or my feelings anymore. I know it's ok to use running as a form of self soothing, just NOT that way. And I kind of hate myself for it.
#Anxiety #Selfsoothing #Running #badideas

Community Voices

Against the wind

Sit down; this is going to take a few minutes.

A month and a half ago I had a mammogram. No biggie, right? It showed a calcium deposit so I
had to get a follow up diagnostic mammogram. Also, no biggie. Couldn’t be more wrong. Shall we dance?

My mammo was done on the bus that came to my work place. Not the usual people that do it but it was my scheduled time of year. My doctor, for some reason didn’t get results but I didn’t know that. When I received the phone call that I needed a follow up, I scheduled the appointment. When I arrived, they called my doctor for his approval of the test and he refused it. Wait. What?

And we’re now shuffling. So I go see my doctor the next t week, he writes a referral for someplace else, I go the following week and the referral us written incorrectly, can’t get the test done. Now I’m fuming! I called my doctor, yelled at his nurse, told her exactly what the tech said I needed the referral to say and told her to call me back. In the meantime, I went to the other place to get my films, which is stored somewhere else but they promised they’d r pedigree it for me. Nice dream, isn’t it? Are you still with me?

Ok. Referral is now written correctly and sent, appointment is set, I’m relaxed. Big mistake. The day before the test I get a call; they don’t have my films. Of course they don’t! Why should anyone do their jobs correctly? So I make the call, do the running, ream people out for apparently no reason (deer in headlights looks) and now I can breathe. Ha!

I finally get to the day of the tests, get to the facility with my films (it’s a CD), and I’m told the diagnostic mammogram is down! You have got to be kidding! In total, I’ve waited a month and a half to get this lousy thing done and once again I’m not going to be able to? I’ve rescheduled it one more time. Thus is the last time I’m doing this. As I see it, I’m not supposed to have this test done at this point. If my breast falls off, then so be it. I’ve didn’t more than enough time, gas, aggravation, brain real estate, and worry on this. Moving on.

Thank you for baring with me. Peace, light and love to you all! ✌️🎶❤️ #Mammogram #tests #Aggrivation #Referrals #Doctors #Running around

Community Voices

Running and Fibromyalgia

I was diagnosed with fibromyalgia 3 years ago, but I’m still struggling to accept the changes I have to make with my life. I’m trying to run a couple of times each week but I have no stamina, can only run for a minute and then have to walk for at least two minutes. How do you guys cope? Anyone who can give me advice? #Fibromyalgia #Running #Stamina

5 people are talking about this
Community Voices

Girls on the run 5k with mild cp and 22q deletion syndrome

My daughter has been training for a 5k race she is 12 years old with mild form of spastic cerebral palsy and a genetic chromosome deletion called 22q11.2 also known as DiGeorge syndrome and velocardiofacial syndrom. This is her last year running the 5k girls on the run race because she is moving on to middle school in the fall. Bella is a beautiful redhead with bright blue eyes. Bella is smart, fun and strongwilled determined to meet her own personal goals dispite pushing through some tough leg pains on ocassion.
Bella has kept up with girls on the run since she was in 3rd grade. Missed days of school to attend physical theraphy appoitments, occupational appoitment and speech on top of psychology appoitments.
we made it through one step at a time achieving one goal at a time.
I wasnt to encourage parents of newly diagosed kid that the moutian we face is huge we can achieve thing in our own pace in our own time. It not about winning first place in the race but building endurance and to keep pressing forward even when our legs mind and hearts feel like jelly piles of goo.
I too have 22q and having my child has shown me humans are made to achieve great things, push past limits and standards set by others.
we are proof that the power of perspective is a powerful force to be reconed with
thanks for reading
#ChronicIllness #MentalHealth #22q11 .2 #CerebralPalsy #Running #Health #Parenting #SpecialNeeds #ADHD

1 person is talking about this
Community Voices

Yesterday I ran, completed, and WON (for my age division) a 5k... on the one year anniversary of “hitting rock bottom”. This time last year, I was fighting suicidal thoughts, could barely move physically and was completely depleted mentally... feels good to look back and see how far I’ve come. #CheerMeOn #Recovery #Depression #Anxiety #Exercise #Running

6 people are talking about this
Community Voices

Observation

I was out for a run while I was in Southern California during the weekend and unexpectedly ran past the mighty office. I was happy to see it. 🙂❤️ #Bipolar1 #Running

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