Tim's Journal

My Take on Listening to Your Body

noreply@blogger.com (WebMD Blogs) — Fri, 30 Oct 2009 13:15:00 +0000

One of the most common pieces of advice I've heard since I've had relapsing Multiple Sclerosis is to listen to your body. And it's good advice. If you're feeling fatigued, you should rest. If your eyes aren't working right, you should see an ophthalmologist. If you're just feeling a little off kilter, you should see your primary care physician. And of course, if you suspect you're having a relapse, you should contact your neurologist.

Clearly, it is really important to listen to your body and take the appropriate action. It's good advice and you'll hear it often if you attend patient programs or support groups. However, something occurred to me a couple of months ago on a particularly beautiful day. Like any good, proactive MS patient I was listening to my body and guess what it was saying? It was saying "Tim, I'm feeling great today. Really just as well as I can possibly be."

No, on that day my body wasn't even carping or griping about a tight muscle. And hey, if we're supposed to be listening to our bodies, why shouldn't we react to good news. Now when my body is quiet or singing happily to me, I embrace it. Why shouldn't we accept good news? After all, we have to deal with so much bad.

Me, My Wife and My Relapsing Multiple Sclerosis - How MS Has Impacted My Relationship

noreply@blogger.com (WebMD Blogs) — Wed, 30 Sep 2009 13:15:00 +0000

"Me, my wife, and my relapsing MS." It's a simple enough phrase, but painfully accurate. I hate to include MS in a phrase describing my relationship, but sadly it does reflect reality once one of its members has been diagnosed with a relapsing form of MS. Certainly, even if you were unwise enough to consider a ménage a trois, MS would certainly not be the third partner you'd choose!

In fact, when I was first diagnosed, MS pretty much took over our relationship completely. Initially, neither of us could think about anything else. It was just too big to put into perspective - the elephant in the room. However, my wife started adjusting to our new reality much sooner than me. Even though I went on treatment and was feeling physically fine, I just couldn't get past my diagnosis. I wallowed in self pity and became very hard to live with.

In the end, my wife had had enough. And frankly, I couldn't stand myself or how I was feeling. She suggested (quite firmly as I recall) that we get some counseling. A couples therapist thought that the problem didn't lie in our relationship, but that I needed individual counseling to help me adjust to my condition. Thankfully, he was right and I was able to come to terms with my disease. Three and a half years on, we're still happily married and fast approaching our 16th anniversary.

Making the Most of Your Next Neurologist Appointment

noreply@blogger.com (WebMD Blogs) — Mon, 31 Aug 2009 13:00:00 +0000

My neurologist is great. I'm sure he gives every one of his patients more time than is allotted. (This is, of course, a blessing when you're in there asking questions, but a curse when you're waiting for the previous patient to ask his or hers!) But even with a helpful doctor and without being rushed, those precious appointments can all too easily be squandered if you're not prepared.

Obviously, the doctor is going to give you that all-too-familiar neurological exam (hello tuning fork, my old friend), ask how you've been feeling, and perhaps order an MRI and a blood test or two. After that, it's up to you to make the most of your co-pay. Here's what has worked for me:

Keep a health/treatment journal. Note anything out of the ordinary or concerning. Remember to bring it with you!

Bring a care partner with you if you can. My wife knows as well as I do how I've been feeling (from listening to all my complaining). She's definitely more in tune with any cognitive issues. Best of all, she might just remember some of it. Remember to bring them with you!

Be educated about your disease and its management. You can't suggest and discuss the merits of a treatment if you've never heard of it. Bring your research with you!

Write down the questions you want to ask whenever they come to you. Bring your list with you! (And don't be afraid to ask them.)

Finding Balance (How I Live Well with Relapsing Multiple Sclerosis)

noreply@blogger.com (WebMD Blogs) — Fri, 31 Jul 2009 13:00:00 +0000

For me, finding balance has always been a large obstacle to achieving health and happiness. Before I ever had MS, like many other young men I struggled to find the right balance between work and home, self indulgence and family, etc. Then, just when I'd finally seemed to get all that figured out, along comes the BIG ONE to deal with - diagnosis with a relapsing form of multiple sclerosis.

If it's hard to put work and life in balance what the heck are you supposed to do when you have an incurable chronic disease? Needless to say, the pendulum pretty much swung entirely over to the MS side. Balance? Not so much. While I largely managed to continue the physical aspects of everyday life, emotionally I was consumed by MS. I guess it's going to take time for anybody to get through the five stages of grief, but six months later, I still had not achieved balance.

If my life was a teeter totter, MS would have been a 300 pound NFL offensive lineman sitting on one end and happiness, family, and perspective would have been the little kid way up in the air with his legs dangling. Fortunately, I discovered that making this kind of adjustment is exactly what counselors specialize in. Therapy is not so much about fixing your psyche but about helping you adjust to reality and, you guessed it, finding balance.

It took a while, but in the end I got back to normal life and put the MS lineman on that teeter totter on a diet. I think the easiest way to describe my view of healthy balance is this - I now simply manage my MS and live my life. I don't live my MS or even put it in the same sentence.

Finding a Support System That Works

noreply@blogger.com (WebMD Blogs) — Tue, 30 Jun 2009 13:00:00 +0000

One of the keys to navigating the minefield of life with relapsing remitting Multiple Sclerosis is finding a support system to help you. For me, the easy part has been the physical aspect of this equation. My neurologist and MS LifeLines nurse have always been extremely responsive and right on the money with their support. When I was seriously incapacitated, my wife dropped everything and took fabulous care of me. I'm a lucky man and I'm well aware of it.

The harder task is finding the emotional support to help you pick yourself up, dust yourself off, and start all over again after the shock of diagnosis and the inevitable (literal and figurative) pitfalls. Again, I have been lucky enough to have what would seem to be enough in this regard - a wonderfully understanding wife, son, friends and extended family. Shockingly though, their love and support, that should be enough to sustain anyone through anything, did not prove enough for me to get past my diagnosis.

What was missing then? What more could anyone ask for? The company of peers, that's what. I didn't really begin the mental healing process after diagnosis until I spent time with others who had also lived through diagnosis and were also fated to spend their lives with the unfortunate but strong common bond of MS.

Shockingly, this did not occur for me until I was asked to become an MS LifeLines Ambassador and met twenty or so other people who knew exactly what I was experiencing. It was unbelievably cathartic to talk about our shared experience and also to see how great everyone looked (regardless of their level of disability). I had previously refused to go to local support group meetings because I feared what I'd find there, conjuring up all the old worse-case stereotypes in my mind.

How stupid was I? Since that time, I've been to many support groups and met literally hundreds of other MS patients. I am constantly amazed by how positive and uplifting it is to share stories, advice, a lot of laughs, and the occasional tear. If you haven't done so already, I wholeheartedly advise you to get out there, contact your local MS Society and join our exclusive community.

A Care Partner's Perspective

noreply@blogger.com (WebMD Blogs) — Mon, 01 Jun 2009 15:00:00 +0000

Because I've totally exhausted my supply of wise or even trite things to say, I asked my wife, who has to deal with me every day, to share a few observations from a care partner's perspective. After all, she has proven her commitment to the "for better or worse, richer or poorer, in sickness and in health" part of our oaths and has taken really good care of me so far, both mentally and physically. The following are a few of her pearls of wisdom.

On me, physically doing well but still wallowing in self-pity six months after I was diagnosed: "Don't use all your pity now when you're feeling fine. There might not be any left later on when you really need it."

On putting MS in perspective: "MS is something you have, not something you are. Don't make it more than it is or come to define yourself by it - you're still you."

On the future: "Don't wait until you're not doing well to start planning for that time. Hope for the best, but be proactive in planning for the worst. It's much better to put a plan in place and never have to use it than to have to scramble when you're health is failing."

On suffering in silence: "You don't do me any favors by keeping me in the dark when you suspect you are having some strange symptom to spare me from worrying. You can't have a doctor with you every day but I'm here and I know you best."

On love: "I love you for you. Don't waste energy worrying about how your MS is going to change our future. If our retirement is spent in rockers on the porch instead of climbing mountains, that's OK. The future is never certain anyway, with or without MS."