MS Acceptance…

Because of its unpredictability, MS is never far from my thoughts. It’s like someone tapping you on the shoulder and saying, “don’t forget, you have MS, remember?” MS seems to provide me with a never-ending to-do list (or a no-longer-can-do list!)

I find that the hardest thing about being sick is that I don’t know how I am going to be from hour-to-hour not to mention day-to-day. I think the hardest thing for me, and probably for lots of individuals with MS, is accepting the uncertainty or even randomness of the disease. I find myself asking, will I ever be able to accept this randomness?

I guess all I can do is try.

I find that by accepting my illness as being a part of who I am, I’m able to adjust accordingly. Don’t get me wrong, I still get angry and sad about it. And I’ll never buy the bullshit that some people peddle about MS being a blessing in disguise. But letting MS be a part of me is my way of getting on with my life.

“Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.” -- Michael J. Fox

Perspective

My mom recently posted an article that she came across about positivity in the MS  community, which got me thinking about my own perspective on MS. I have a hard time relating to the endless positivity that seems to permeate the MS community, at least as reflected in the National MS Society publications. This can be helpful but places too high of expectations on those of us that are dealing with more advanced forms of the disease (we won’t be running marathons anytime soon). It would be nice to see a more “real” and balanced perspective.

This article points out that positivity sells; the “I have MS but it doesn’t have me” mentality. As if you have a choice in the matter. This almost relentless positivity can have the opposite effect. If this person with MS can run marathons, what’s wrong with me that I can’t? Am I not trying hard enough? I read once that someone was actually thankful they were diagnosed with MS because it changed how they look at and lived their life. Well, that’s a nice soundbite. 

The pressure is almost toxic.

I encourage you to look outside of this social media phenomenon where only the good times are posted about and the goal is to show everyone how well you are doing. Let’s see the woman who ran her first marathon with MS but let’s also see the people who fight hard every day and don’t get better but have learned to adapt.

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.” - Mary Anne Radmacher

Disabled vs. People with Disabilities

If you’ve followed social movements in the last decade or two, you’re probably aware of how language and words have been examined for their power to be exclusive, or ideally, inclusive. In the disability rights movement, one such battle is over the use of ‘disabled’ or ‘disabled person’ versus ‘person with a disability.’ The first places the disability paramount, while the second does not (instead, identifying the ‘personhood’ first).

I always preferred to be described as a ‘person with a disability.’ Why? Because that has always been how I have wanted the world to see me, as a person, as more than just my disability.

There is importance in the words used to describe disabled people, and the words we use to describe ourselves.

The term 'disabled people' is still preferred by some people who want to highlight the challenges and barriers that the disabled face. For those that ascribe to this social model of disability, the 'disability' is paramount and caused by barriers put in place by society.

Society has generally seen being disabled as a negative thing. The lives of the disabled are, at best, difficult and unfair, and at worst, worth less than the lives of the non-disabled, or even not worth living. If a person becomes disabled later in life, mainstream society has taught us to believe that their life is going to change in a very negative way.

I have realized that my disability is a very important part of my personal identity. I would love to fully reclaim the phrase 'disabled person.' Like those that adhere to the social model of disability, I understand that society is primarily to blame for my desire to describe myself as a person with a disability. However, until society accepts two simple facts that disabled people have always known—the fact that we are human, too, and the fact that our lives are not negative—I doubt that I will be able to fully let go of my preference for being called ‘a person with a disability.’

If people are going to be born with, or acquire, impairments, they should be entitled to the same social opportunities as everyone else, including the right to disability pride. Since impairments are always going to be a part of life, it’s necessary to build a disability-inclusive society with a sense of belonging for all.

Aging with MS

I turned 40 last month which got me thinking about aging with MS. How is it going to be different for me than my friends?

Everyone has to make adjustments as they get older. But for people who have MS, adaptations to changing abilities are often required at a younger age and may require more frequent adjustments as the years go on.

But you don’t have to face this alone. It’s important to allow yourself to seek and accept help. Some people refuse assistance because they’re embarrassed or because they don’t want to impose. That’s a mental hurdle we all need to get over.

It is also vital to keep up with your healthcare. Not just with your neurologist or MS specialist but to address primary care needs. Many patients do not see a primary care provider or a gynecologist or other providers. All routine screenings have to be completed to prevent other diseases and their complications.

Your future with MS is probably uncertain but you need to prepare for progression. While it may be more comfortable to close your eyes and hope it just goes away, you need to face it head on. Hope for the best but prepare for the worst.

And, as I discuss in other posts, maintaining social support and reducing social isolation is important for everyone, and even more so for those with MS. Staying connected is key to a full life.

So, face the future with your eyes open, prepare for future uncertainty and realize you will need to adjust and adapt, and keep your friends close! It’s the best any of us can do.

World MS Day

Today is World MS Day and this year’s theme is #BringingUsCloser. The #bringinguscloser campaign is about bringing us closer to a cure for MS by connecting the MS “world”: people affected by MS, those involved in MS research and clinical trials, and the individuals and institutions that raise money for research. It's a chance to come together to celebrate what we've achieved in MS research so far, and share our hopes for the future.

Life with MS is hard and everyone’s needs are different. Barriers for people with MS are all around us. Access to employment opportunities, or even communication barriers that impact relationships, are just a few examples of the many challenges beyond the physical symptoms of the disease.

These are the subtle realities that need to be communicated. Educating the public, advocating and informing lawmakers and building awareness is one way to promote better understanding. Have you ever wished that people better understood what you were dealing with, or how you are feeling? World MS Day is an opportunity to talk about these issues and be heard. By sharing our experiences we can help to shape services in the future.

MS is More Complicated Than You Think from MultipleSclerosis.net

MS and Your Future

It’s funny how your life is made up of distinct periods of time that encapsulate defining moments.

For me, the most pivotal moment came in 2011 when I was diagnosed with MS, splitting my life into pre-diagnosis and post-diagnosis periods. But there are defining moments after diagnosis as well. There is pre-wheelchair and post-wheelchair, of course. A year ago, I was in the hospital, so there’s that as well.

There’s no way to predict how your condition will change throughout your life. MS comes with a lot of uncertainty.

Everyone with multiple sclerosis is a little different, so your plan has to be very personalized. You need to hope for the best and prepare for the worst.

You need to get smart about MS. The best way to start planning for your future is to become your own advocate. Find out everything you can about multiple sclerosis and its treatments from reputable sources. Learn how MS can behave and stay informed so that when symptoms begin, you will know your options.

I didn’t know I would end up needing a wheelchair but when my husband and I were searching for a home we definitely kept that in mind. An accessible building without obstacles was a must.

It’s also important to understand all your health coverage benefits. When I needed to be admitted to the hospital last year, I took advantage of FMLA so I didn’t lose my job.

Finally, you need to develop a financial plan. As a chronic condition like MS progresses, it could have an effect on your employment and earning power. You need to be ready to control MS not just physically and emotionally, but financially - work with a certified financial planner to prepare for your future. And contribute to a retirement plan while you can.

It’s important to take control of what you can and prepare yourself and others for what may come. An uncertain future does not need to be an uneasy one.

MS and your bladder

A year ago, I had a suprapubic catheter inserted into my bladder. It has changed my life.

Like me, many with MS have bladder problems. In one estimate provided by the National Multiple Sclerosis Society, bladder problems affect at least 80 percent of those with MS. Typically in MS, bladder dysfunction occurs when nerve fibers are damaged, blocking or delaying nerve signals that control the bladder and the muscles surrounding it. Because of this, people with MS may have overactive bladder, underactive bladder, or both.

Bladder dysfunction can be embarrassing and can interfere with social outings and relationships. It can be isolating – making sufferers afraid to leave the house for fear of accidents or constantly needing to be near a restroom.

This was true for me. With my limited mobility, it came to a point that I couldn’t transfer to the toilet on my own. I had lost my independence. I tried medications but they didn’t help me enough. I needed a change.

A suprapubic catheter is a hollow flexible tube that drains urine from the bladder. It is inserted into the bladder through a cut a few inches below the navel. This is done as an outpatient procedure.

I have a tube running down the outside of my leg to a drainage bag hooked to my wheelchair. Because I don’t have to worry about finding a bathroom (let alone an accessible one!), I have less anxiety. I can go out again. Part of me is back.

Everyday Health: Coping with Bladder Dysfunction