What It’s Like to Live with MS
MS can be tricky to comprehend, and since no two cases are alike, we asked them what they wished people knew about it and reached out to individuals that are currently living with the disease. Here are their stories.
“You’d think after all the years, somebody would be settled with something like this, however, it’s still difficult to accept.”
In a brand new interview with People, the Sopranos actress Jamie-Lynn Sigler explained that she wasn’t prepared to speak about her illness before today.
Frequent indications of the illness include trouble keeping and walking equilibrium, fatigue, sensations of tingling or numbness, and eyesight issues. However, depending on which nerves are affected and the degree of harm, symptoms may not surface right off or advancement steadily, and can vary widely from person to person.
It had been during the last decade the newlywed and new mother started to struggle with the often unpredictable effects of the disease. “I will not walk for a long period of time without resting. I cannot run” she explained. “Stairs? I can do them but they also are not the easiest. I have to think about each and every measure, which is frustrating and annoying while I walk.”
“Even if we’re in times of remission, we are struggling emotionally on a daily basis.”
It was an “odd” transition from caregiver to individual for Freeman, who says she has managed to locate a way to play both roles in the years since her diagnosis: “I have radically changed my diet, strove to decrease anxiety as far as you can, and I have learned that I need to say ‘no more’ sometimes in order to remain healthy.”
One thing that’s surprised her is the way people tend to think of MS sufferers in two ways: “Both complete and total disability or a totally ordinary person with a minor illness” says Freeman, who blogs for the Multiple Sclerosis Association Of America (MSAA). The reality is that some people can become disabled during flare-ups, but remain relatively functional at some other times, she explains.
Fear of the future, however, is something they share, she states: “It’s inevitable having an incurable disease.” To escape the worry, she tries to live by the mantra It could always be worse. “There’s obviously something to be grateful for” she states, “regardless of how little.”
“However, overall, MS hasn’t stolen my function, and that I feel hopeful due to this.”
“I am not in denial” states Sagaser, who had been diagnosed with Nov. 13, 2007, her dad’s birthday. She had been married for eight years, two of which they’d spent trying to get pregnant with her husband. “The community neurologist who diagnosed me wanted me to start on a disease-modifying drug treatment straight away, however, that I wasn’t going to put aside our plans to have a family.”
A mother of 2, Sagaser has been around the identical medication and has not gone through a relapse.
“I encounter neuropathy in my hands and feet, fatigue, word recall issues, and at times long-term memory lapses. However, I consider those who seem to get a more virulent form of the disease, and my wellness appears to decline more rapidly and markedly compared to my own, and I’m grateful my legs work, my arms work, my palms get the job done. And my mental faculties are intact.”
“I never imagined I’d be 40 years old and living at home with my parents.”
Aivazoglou recalls when her days were spent with no wheelchair brace. Now, with mobility on the left side of her body, she requires help from aid and her mother to eat, wash, style her hair, and much more. “Although I am quite lucky to own them, it stinks” she admits.
Aivazoglou proceeds to experiment with various choices Though she has tried medications that failed her. Along with disease-modifying treatment medications, she uses marijuana to help avoid muscle spasms and takes a sleeping pill time.
However, her biggest challenge is coming to terms with the role reversal she has experienced her daughter, who’s now 10 years old. “I want to be able to drive my kid to dance, place her while she does a gymnastics move; instead my daughter is helping take care of me, calling 911 when I collapse” states Aivazoglou.
“I simply thought each time that I had been exhausted that I was fighting a cold, stressed, or working hard and had to rest.”
The very first indications of numbness and exhaustion eight years back didn’t phase Prada. “I assumed would be fine, and I even ran a 12K race with exhaustion and a numb body” she states.
On the morning of the graduation of her son, a professional was finally seen by Prada. “The neurologist acted as though it was no big deal to tell me I’d MS, gave me advice on four disease-modifying medications to review to decide which you take, suggested I sign up for Bike MS, and gave me [a] publication” she recalls.
Her exhaustion is near-constant. “I monitor my energy level, and that I take it seriously as it dips to the point of feeling like regular alive is like trying to walk through water.”
Her new attitude isn’t to combat or combat the illness. “That [speech] never resonated with me” states Prada, who blogs for the MSAA. “Constantly fighting seemed exhausting to me was already experiencing extreme exhaustion. Thinking of my own body as a buddy that is currently doing the best she can make me feel like I had some control. It made me feel like I could assist my body continue to do as far as you can for as long as you can.”
“Lots of people don’t talk about it, but it does take a toll on your sex life.”
Tolson is the first to acknowledge that MS can shift the physical and psychological dynamics between partners. “Sometimes once you’ve got a flare-up, you simply don’t wish to get touched. You’ve got tingling and numbness in your legs and on your arms and simply being brushed by somebody may feel awful” she explains.
Joining separate support teams aided Tolson and her husband by letting them vent about her illness without needing any frustration out on every other: “I don’t attempt to pretend what it’s like being in his shoes since I don’t know what it’s like to worry all of the time the person you love is going to get worse.”
Tolson’s most important concern is “remaining as good as I am now” she states. The Rockette was back on stage 2 years back for an alumni operation, since retiring from Radio City in 2002, and she’s been teaching dance on the weekends.