Category Archives: MS and Emotions

Multiple Sclerosis: One Day at a Time

So I was beginning to feel better for about three weeks and then recently my luck turned. Not so sure what is going on at this point, but I feel about as lousy as I did at the onset of this acute attack. I’m kinda disappointed and my energy is lagging again, and I need to feel better for my social work practicum (just started on Monday). However, I might not feel better for a while or maybe this will be my new normal, which of course frightens me. So I’m facing the fact that I need to take everything slowly and deliberately, and it might be on a day-to-day basis (or even an hourly basis, as I struggled and learned at practicum on Monday). I’m always the optimist, so I’m thinking of a way to turn this disappointment around. I just can’t allow myself to think otherwise.


Hope you are feeling and coping well today.



MS and 15 Years In

So I’m trying to be a little more consistent with posting, but again— this graduate program IS KILLING ME. It’s a ton of writing because it’s distance education. Lots of posting and commenting on others’ posts. YIKES. But I think the end result will be well worth it. I’ll be done in about a year: end of August, 2014. And speaking of time, I need to commemorate the 15 year anniversary of my first multiple sclerosis symptom. Not the anniversary of my diagnosis. (I think that occurred, FINALLY, in 2005?) 15 years in and I’m still pretty mobile, although quite tired a lot. But my schedule of work and school is manageable at this point. I have a final practicum starting in January, and I might need to pare down my work schedule, but I’m trying to take it all in stride (SORTA!) We’ll see.

*I hope your anniversary(ies) are points of strength, too, as you battle this annoying MonSter.

MS: In Sickness and In Health

So I haven’t been on here as of late, and I wish I could keep up with the writings, but my MSW program is creaming me! Seriously: I am so glad to be going to graduate school for social work and to prepare to work with others who have MS or any of a myriad of other issues. However, I feel so absolutely drained these past few years. (The program is four years part-time but it sure feels FULL-TIME. LOL) And since my 10th wedding anniversary was this weekend, I thought of how multiple sclerosis has affected my marriage and my definition of “in sickness and in health.”

I hafta admit that certain periods have been rough. I am currently doing well and working part-time as a mental health peer, sharing my knowledge and support to other mental health consumers in an intensive outpatient program.  And I’ve also been doing this grad program. But there was a time when I was barely working and I was not earning social security benefits. My husband and I were really struggling financially, and that can take a toll on any marriage. So can being depressed because of that lack of work. But with a lot of good luck I was able to secure some part-time meaningful employment, helping my depression and anxiety.

More recently I had to say goodbye to a five-hour-a-week job helping a senior citizen. It was only one day a week, but it reminded me, again, of my physical limitations and my uncertainty about staying gainfully employed. It was my husband who had to remind me of how far we’ve come and how I still work 18 hours a week at a less physically demanding counseling job….So we toil again to make ends meet and we always worry about our outrageous health insurance costs (nearly a grand a month for the two of us!), but we seem to bolster each other up during rough times and remind one another of that vow uttered ten years ago: “In sickness and in health.”

Forgetting MS?

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.

I’ve Joined an In-Person MS Support Group

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.

*** For more information about MS support groups in the United States, visit the Nat’l MS Society and the Multiple Sclerosis Foundation.

MS: Remaining Active for Mental Sanity

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.”

Guest Writer

I’m getting ready for Thanksgiving and the approaching Christmas/Chanukah season, so it’s nice to hand over the reins to another writer this week. Mary Ellen Ward blogs about different health topics and she has offered this stress-reducing piece for your consideration:
“Managing MS Through the Holiday Season”

Multiple sclerosis (MS) can be a debilitating and very challenging disease to live with. For those who are afflicted, they may suffer from any number of symptoms. These symptoms can make daily life seem like a complicated process. Before you give up and feel that the traditions and life that you were once used to are gone, know that there are simple and effective ways to cope with them throughout the year. As the holidays approach, it’s important to keep in tune with your symptoms. Though MS may vary in intensity for those who are affected with it, managing the symptoms is always an important aspect of this disease. As the holidays can tend to bring about a great deal of gatherings, activities, and potentially stress, it’s important to know how to manage MS at this time of year.

Get Your Rest

Not only do you need to get a good night of sleep, but it’s a good idea to plan for a nap whenever possible. As fatigue is one of the most common symptoms associated with MS, you don’t want this to overtake you. Getting your rest is also a good idea to help with other symptoms such as muscle pain and stiffness. So whatever you are doing or wherever you are heading for the holidays, be sure to plan for some much needed rest. This can allow you to still enjoy yourself and time with loved ones, but not let MS get the best of you.

Avoid Unnecessary Stress

Though stress isn’t good for anyone, it can cause the symptoms of MS to become much more difficult to cope with. If you suffer from MS, it’s a good idea to avoid stressful situations. Any stress that you feel can make the pain associated with MS much more severe. Stress can also inhibit your ability to rest well, and this can cause a downward spiral with all of the symptoms that you suffer. Learning to manage your stress and limit your worry or concern can be a helpful tactic in coping with MS, particularly during the holidays.

Keep with Your Treatment Plan

Even if you’re planning to travel for the holidays, it’s important to keep up with your treatment plan. Take your medication as prescribed, as this is one of the most important aspects of living with MS. Be sure to pack your medication and don’t miss a dose as it can result in symptoms flaring up. If your doctor has you involved in some sort of physical activity, do your best to get it in even if it’s in a modified manner. It’s important to be diligent about keeping to your treatment plan. Though the holidays can be packed full of fun activities and it can be easy to forget, sticking to your treatment plan is essential at all times.

***Mary Ellen Ward blogs about how to choose among LPN to RN degrees.

MS News Updates

It’s been a bit of a crazy week here at the Jersey shore, and so I’m posting a catch-all of latest news. Hope this finds you well and happy:

Joan’s Next MS Chat Room Session: This Friday, Oct 23rd

Come enjoy a Halloween party with Joan and her fellow chatters. The session is from 7 – 9pm, Eastern Standard Time. All are welcome, and more info and login instructions are available at her blog A Short in the Cord……… Joan’s chat is THE BEST!!

Glenn Close’s Mental Health Website

I learned about this site just this morning, as actress Glenn Close and her sister Jessie told of Jessie’s long battle with bipolar disorder on ABC-TV’s The View.  Having struggled with depression since multiple sclerosis altered my life course, I am a HUGE advocate for mental health and bringing knowledge to the forefront. So many people hide their emotional problems because of embarrassment/shame, misunderstanding, and doubt. I seek the ongoing help of a social worker and a psychiatrist— I take an antidepressant— and I want to pass this helpful site on to you and anyone else you might know who is afflicted by emotional illness. There’s help and support:

MS Strength has Reached its (First) Goal of $100 in Ad Revenue

It’s taken over a year, but MS Strength has reached the $100 threshold needed for Google to pay out ad revenue. 100% of the profits will be donated to the National MS Society (the U.S.), who has a high priority of using funds towards MS research. The thermometer is set back to $0, and the next donation will be made at the next $100 threshold. Thanks to those who helped the thermometer rise; it feels great to take this money and donate it to our MS cause. A future post will tell about the actual donation, as I am currently waiting for Google’s check. :)

A New Website for MSers Which Chronicles 5 Patients’ Journeys and Distributes Information about Disease-Modifying MS Medications

I, along with 4 other MS webwriters ( Lisa, Julie, Kimberly, and Bill) have been hired to video blog our multiple sclerosis stories—along with personal journal entries— at a new website sponsored by EMD Serono, a maker of one of the current disease-modifying MS medications and a future MS medication. The site focuses on our stories and it also provides drug information to those who subscribe. As a HUGE advocate for newly-diagnosed patients learning about and trying disease-modifying medications, I’m proud to have been tapped and I feel myself helping others to weigh their medication options, no matter what the brand and the final decision. Thanks, EMD Serono, for allowing the 5 of us to accomplish this:

A Local Piece of News About Officials “Spinning Wheels for a Day”

This story caught my eye— I found it at the Nat’l MS Society’s FB page. Interesting, and it gives those in charge a chance to see what others with adaptive devices must navigate on a daily basis. I doff my hat to you, fellow resident Jackie Jackson: The Star Ledger’s Oct 15th Middlesex County News

MS: Today I Feel Angry

I have to admit that my feelings about my status quo change almost daily. No matter how much I try to rope in my moods and put on a mask of gratitude, I most certainly do not FEEL gratitude every waking moment. Just the nature of the MonSter I suppose.

I’ve become acutely aware of my feelings over the past several years and I notice a pattern: I go through cycles of low-level depression/anger every couple of months. It’s a vicious loop, but I imagine it just goes with my personal situation: being out of the workforce at the tender age of 38. I am not feeling sorry for myself or asking for sympathy, but merely acknowledging how I feel. Feelings ARE legitimate and with multiple sclerosis (or any other chronic illness) they can and WILL fluctuate, depending on the circumstances of the day. So I feel the low simmer of anger today as I sit here and feel underproductive, underutilized, and definitely underpaid! Where went that career I was promised in my early 20′s?…

A lot of days I DO NOT feel angry. I feel downright blissful and productive and appreciated. These are usually the days when I leave the house to volunteer or be with family and/or friends. Full days that remind me of how I used to be. Today is no such day. I need to self-start and motivate myself to study for a class test (I’m taking a psychology class which I do, in fact, love.) And some days I find this very tricky. I have also been sending out job inquiries with little response. So I stew….. I try to explain this pervasive feeling of anger / depression to others who don’t have MS and I don’t think I’m fully understood. The anger stems from a lack of utilization. I am like a slightly older toy, sitting and waiting for use because I am still mobile and physically viable, just slightly slow and gently worn. Under the right conditions and with a little care, I can work and be useful.

Here are some things I’ve found that really burn my Bunson:

  • I look at my years-old clothes in my closet, and I wanna bag everything up and bring it to Good Will. But I haven’t any extra money– because I’m underemployed— to buy a new winter wardrobe. The same holds true when I wanna pitch all of my old housewares/bedding/linens and I realize my money’s already spent.
  • I see some able-bodied person landing a journalism job outside of the home and I wish it was me.
  • I make contacts for new writing opportunities and I hear nary a response! This one REALLY singes…
  • I haven’t a grasp of where the day will go— too much free time— and I long for a no-brainer schedule.
  • I KNOW I should be making a reasonable living as an educated, full-fledged adult and I am NOT.

Now I admit that a lot of this anger is trivial, but that’s the way it is. Some days are just not the “full-of-gratitude, I’m-successfully-fighting-my-MS, I-won’t-let-this-condition-ruin-my-mood” sorts of days. Nothing wrong with that. The feelings are honest and they too shall pass. But they are real and they have a right to be acknowledged.

MS: What Will the Neighbors Think?

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30′s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and I had just lost my job— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!

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