I must confess here that I’ve been away from this site and it has felt GOOD. I remember when I was going through tough times with my MS, I’d post at least once a week and tell my continuing story. Now not so much. And I’m thinking it’s because I’ve been doing relatively well with this condition. Things have picked up in terms of manageable employment and an opportunity to do a graduate program. However, I do feel the whispers of multiple sclerosis when I’m immersed in the “real world”, where things run at lightning speed and others expect me to juggle many tasks because that’s what grown-ups do. So being back out in the “real world” has been good but it’s also been a tad bit isolating: I don’t go at lightning speed and I don’t cram my schedule with too much to do. I’ve been burned by this in the past. So I have almost become more aware of my MS and how it makes me different when I am out with non-MSers. There’s nothing wrong with this— I know this in theory. But I do have a nagging feeling of, “I have multiple sclerosis” when I get out into the world. So it’s good and it’s not so good. This is my thought today as I manage to do homework and consider how I’m going to perform a watered-down schedule this week to keep up my strength. My inside world freely acknowledges this and I almost forget my MS. My outside reality, however, reminds me that I am a product of my multiple sclerosis and that I have adapted my lifestyle, for better or worse.
YES! It’s hard for me to believe it myself, but I was finally enticed by a fellow classmate from high school. I learned about our common disease through, of all places, FACEBOOK. YES!
I wasn’t sure if I’d ever join such a group: my long road to diagnosis made me settle slowly into the idea that I probably had multiple sclerosis. I wasn’t hit over the head with a drastic flare-up and suddenly changed: there was a slow progression with attacks increasing in severity and duration over the past 11 years. When I was actually diagnosed, I was going through a downward spiral of ever-decreasing employment and an uncertain future of disability benefits / no satisfying career. The last thing on my mind five years ago was to join people face-to-face and keep from bursting into tears.
My mom and I actually once attended a seminar (given by my honorable neuologist) for newly-diagnosed patients. I was in such a slump at the time and I could barely move my limbs as I shuffled, mid-relapse, into the meeting where pharmaceutical reps hawked their wares—pens, writing tablets, mouse pads, water bottles, fanny packs— and a nurse handed out a poem about what MS was akin to: believing you’re going to fast-paced, glamorous Paris and being rerouted to Bavaria. Both are great, but different. And the subtle beauty, slower pace, and depth of Bavaria becomes “the road less traveled.” Well then and there I burst into tears and made my mom get up so that we could leave. I think I might have frightened all the NEWBIES! I can laugh about it now, but at the time I was too neck-deep in my own concerns and depression and anger to want to share with others or be a source of comfort and understanding for the rest of the group.
Since being diagnosed, I’ve finalized my disability case and have found a steady– albeit slower– pace with satisfying volunteer hours, a class or two, and some freelance writing work. Things have stabilized both physically and mentally. I’ve gained insight from a social worker and have made strong bonds with online support networks. And yet I’ve had the ever-increasing need to meet others in person to support, be supported, educate, be educated, laugh with, and occasionally commiserate with. The craving to be in an ongoing group setting where I can steadily grow with other MSers. Little did I know that this need would be met with a local in-person support group through the MS Society. And that I would learn about it through a fellow classmate on Facebook. Life is STRANGE.
I joined the group in November of 2009 and we had a Tai Chi instructor (a patient’s mother) who gave us simple poses and breathing exercises to incorporate into our daily routines. We also spoke of Thanksgiving recipes and what we do for the holidays. In December the group met at a Chinese buffet and we spoke about the new concept of CCSVI. Was it a lark or would it get further research? And then this past January we met and just talked for two hours– no instructional demonstration or specific agenda. Just talk. NICE. And I have to tell you that because I’ve become emotionally and physically ready to face my fears, I have been met by a bunch of people laughing and kvetching and sharing and educating and not ONE moment of it has made me want to burst into tears.
Okay– I realize this title and photo are a little convoluted. Yet it’s so true: in order to stay positive, fulfilled, and mentally agile, one needs to maintain an ACTIVE life (despite having multiple sclerosis.) This doesn’t mean running marathons or even working full-time. It merely means that patients must find ways to thrive and remain true to themselves even in the midst of health changes and setbacks. And I’m the first to admit that it’s HARD.
I’ve found myself in a couple of slumps over the past five years (post-diagnosis.) Downgrading to part-time work– or no work— can make one feel like less of a person. It definitely knocked me for a loop: did I ever imagine that I’d have to drastically slow my pace in my thirties? My perception of myself went from being an active health professional to that of a sick, barely-contributing patient. And no matter what loved ones told me, the blows to my ego— not financially providing for our household, not having a meaningful career, accepting others’ condolences and assistance— became a heavy burden at times. It STILL smarts on occasion, but things have picked up in the past year. I would never have believed that mental “convalescence and rehabilitation” could take so long. Except I’ve now experienced both and have just emerged, dignity and self-respect intact, on the other side. Here is what I’ve gleaned from the experience:
It is OKAY to work on your mental health
Sanity is not always a given. Uncontrollable circumstances can– and will– rip apart the fabrics of our peaceful, predictable worlds. Seek out the emotional help (whether through support groups, individual counseling, or online support) to stay active and in the game.
Find things that challenge and activate your brain
Keeping mentally active is key to having an active, fulfilling life with MS. It’s so easy to become stuck and set in comfortable habits. But it’s better for overall health to seek new and challenging mental pursuits: new word games, classes, new hobbies, new friendships. Find that which makes you excited and joyful and creates a daily mental expansion.
Seek the support of experts: life coaches
These individuals can assess your needs and what you can incorporate into you life to be more involved with your community, your family, work, volunteering, and so on.
Set ONE manageable goal and work on achieving it
I had so many ideas rattling around in my brain, but I found that when I focused on ONE plan, some of the other ideas naturally fell in place with it. And then setting the next goal became that much easier.
Seek out others who cultivate your desire to be active
This one can be tricky. It’s mentally healthier to align yourself with others who want to thrive (whether they have MS or not.) But thankfully some of the most challenged people also have the greatest drives to succeed.
Accept imperfection and persevere
Things will go wrong. Illness will likely return. Failures crop up. But the definition of courage says it all: “the ability to move ahead even though one is afraid.”
