Staying Active with MS

Staying active isn't always the easiest. With MS or NOT. Our lives are busy, hectic, stress filled and we're lucky if there is enough time in the day to think let alone be "active". Add to the mix a disease that makes mobility a challenge and energy levels often non-existent and it becomes that much easier just to "park it" on the couch. Perfect. NOT. Having balance and mobility issues makes it even MORE important to keep moving. What you don't use, you lose. Especially when it comes to core strength. Our core stregnth greatly impacts our balance as well. So, if your core is weak, your at even greater risk for balance problems. Not to mention back problems as well! There are a lot of exercises you can do to help strengthen your core muscles. Most of the exercises I do for my core are actually done sitting down! (So being in a wheelchair or having poor balance is no excuse). RIDING is a GREAT exercise for your core. There are a lot of therapeutic riding centers. Find the one in your area. Contact your MD and ask for a physical therapy evaluation. Work with a physical therapist to design a program specifically for you. PT is covered by insurance and a lot of insurance carriers WILL cover the cost of a therapeutic riding program is well. (They may deny it the first time, but if you appeal and your Neurologist writes a letter, they will reconsider). Another thing I suggest for helping your balance and core: Wii. Yep. Wii. Wii has a fitness program called "Wii Fit". It comes with a special platform that you stand on. (Although not all the games require the use of the board). The program has Yoga, Aerobics and balance games. I can't do the aerobics, but I enjoy the Yoga portion as well as some of the balance games. Yoga is a great exercise for MSers and easily modified. Again, some insurance carries will cover the cost if it's a prescribed therapy. (The yoga, not the Wii). Of course, this is where the safety warning is issued. CHECK WITH YOU DOCTOR BEFORE STARTING ANY EXERCISE PROGRAM. There, now that's out of the way. Another reminder for MSers: Watch the heat. If your going to increase your physical activity remember to monitor how your body is tolerating the heat. Both the external temperature as well as your internal temperature. Don't over do. Start slow. Just keep moving and stay as active as you can be! It will make a BIG difference. Not only physically but psychologically as well.

Communication and Support

I had an interesting conversation today with someone during my physical therapy. The topic was caregiver stress and how that stress effects the relationship between the MS patient and their loved one. Especially if the caregiver is the husband/wife/significant other of the patient. As the "patient" I often forget how MS directly impacts my "caregiver", my husband Mark. On a daily basis, between exacerbation's, life goes on for us as "normal". It's DURING and immediately following an exacerbation that the caregiver needs extra support as well. After all, I become (for obvious reasons) pretty caught up with how it's directly impacting MY life and in all honesty, tend not to seriously think about how it impacts Mark. Sure, I can tell when his stress level is too high (what wife can't?!), but as far as really being sensitive to how he is coping with things during the actual exacerbation, it doesn't happen. That being said, it's not in my "wiring" to be a whiner or a complainer. In fact, I tend to isolate myself. So, at least Mark is spared that. If anything I think his frustration during an exacerbation is based primarily on the fact that he can't stop or prevent it. Nor can he take away the side effects of treatment. I will however be honest when I say that when Mark IS frustrated with ME, it's generally because I'm being stubborn and pushing myself too hard. (That goes back to the not wanting to be a burden). The key on both sides is communication. (Sadly, not a strong point in a lot of relationships. Add a challenge to the relationship and this becomes VERY apparent). Mark and I do A LOT of talking. It's not always easy. Sometimes the MS makes it hard for me to find the right words. (Try telling someone how your feeling about something and your brain won't give you the word). Sometimes it's my frustration and anger over the disease that makes it hard to open up. I can't answer for Mark, I won't even try, but I'm sure that there are times when trying to get what he's feeling or thinking across to me isn't easy for him either. I can't imagine what it would feel like to watch someone I love go through this, and not being able to "fix" it. I imagine I'd experience every emotion out there. Anger, sadness, grief, frustration, depression, every one of them. I would imagine there would also be times where the feeling of being overwhelmed would be pretty powerful. In other words, every emotion I feel as an MS patient, I'm sure my husband feels as a caregiver. So, how do we deal with it? How do we prevent stress issues, both caregiver stress, MS stress and day to day living stress for becoming a problem? It's not easy. It's one day, one exacerbation at a time. It's CONSTANT communication. We TALK. We devote an hour each day, every day to communication. No TV, No phone, No distractions. As Mark travels on business every week we have that hour by phone EVERY night he's gone. The same time every night. No exceptions. Is every night's conversation "heavy" NO. That's not the point of the hour (which often becomes 2-3 hours even on the phone). The point of the hour is that it's OUR time. Face to face (or ear to ear) uninterrupted attention given to each other. Our time to "reconnect' after the hustle and bustle of our days. Our time to focus on the most important person in our lives, each other. We know that if we do this, communication flows freely and it's much easier to talk about any POTENTIAL issue before it BECOMES an issue. Another thing I can't recommend enough. The caregiver and patient need outside support. When you are faced with a life altering disease attending a support group ought to be a requirement! Both for the patient AND the caregiver. No one understands what Mark goes through better than another caregiver. No one can support him, encourage him or point out another way of thinking in dealing with a loved one with MS better than another caregiver. Same for MS patients. As a fellow MSer you've heard the fears whispering in your ear. You know what they sound like and what they say. No one can tell an MSer to stop feeling sorry for themselves and get away with it like another Mser! (We ALL need to be told that now and then. It's OK to allow yourself an infrequent "pity party now and then, but then you need to snap out of it. Pull yourself up by the boot straps and move forward). So, my suggestions: Work on communication and get active with your local MS support group! BOTH patient and caregiver!

A funny thing happened on the way to middle age....

One day your 18, graduating high school and you have your entire life before you. Your head is filled with all the wonderful things your going to see and do. Your going to change the world! After all, the generations who came before you OBVIOUSLY had no idea what they were doing or the world wouldn't be so screwed up! YOUR going fix all that! Time goes by, you start a job or college. You celebrate a birthday or two. Have your heart broken, find REAL love. Perhaps have your heart REALLY broken. Experience loss, get married. Have babies (and with babies comes the first REAL taste of fear), lose a job. Get another. Through it all we are undergoing a constant process of change and growth. We go from "knowing it all at 18 and boy, are my parents stupid" to realizing that we really don't know a heck of a lot at 40! At 45 you start wondering WHY? When your parents were 45 THEY seemed to have it all together and had the answers. You lok at yourself and realize that you don't. You look at your life and wonder, "Isn't it SUPPOSED to be getting easier by now"?!? That's when I take a deep breath a re-evaluate. The heck with MS. I'm not even THINKING of MS at this point. I'm re-evaluating my LIFE. Refocusing so I can get back on what ever track I've wobbled off of. Usually, I find the track I've "wobbled" off of is the JOY track. Come on, you remember that one. The JOY track! The one that your on when you have such a belly laugh that you rush to the bathroom in order to avoid peeing in your pants! Think back now. Has it been that long?! (Looks like I'm not the only one who needs to do the occasional re-evaluating)! My son re-introduced me to the "JOY track" during a phone call yesterday. My son and his wife are expecting their first child in early February next year. My son is in his mid 20's and a pretty level headed man if I do so so myself. (I'm awfully proud of the man he has become). Anyway, I answer the phone and am greeted with, "This grandchild of your is getting pretty expensive". No, Hi Mom how you doin? Nope, right into the meat of what was on his mind. LOL He was completely serious and had called his mom for emotional support. Me being the wonderfully supportive mom I am, immediately started laughing, stating, "Welcome to the next 18 or so years". Of course at the same time my mind went back to the days when it was his father and I trying to make ends meet with one baby and another on the way. Trying to make ends meet and figuring out how to make a dollar stretch. I told my son that while he may be a bit nervous now, everything WILL be OK. I also told him to enjoy this time, as it will go by so fast. I shared stories with him during that call of his father and I struggling to make ends meet. Yet, I told him, THOSE were the BEST times. At the end of the conversation, he was more relaxed and laughing. I hung up the phone, lost in my own thoughts. Remembering how wonderful, crazy, stress filled and love filled my life has been through the years. Now, I am having the wonderful opportunity to watch my son experience the same experiences I had. I get to watch, laugh and reassure and enjoy. I realized that a funny thing happened on the way to middle age.......I've REALLY had a great life. One, God willing, I'll continue to enjoy for many, many years.

Don't Sweat The Small Stuff

While MS controls a part of my life. MS ISN'T my life. There's a whole lot more to living than MS. I try to keep it all in perspective. It's actually really easy for me to forget that I even HAVE MS. Other than making sure I take my pills four times a day and my shots 3 times a week, unless I'm having a "symptom" day, each day is like another. Adapting to the mobility changes and other issues that MS brought occurred over time. So, while getting up and around tends to be slower, reaching for the cane when it's needed is automatic, not requiring active thought. With the realization that I didn't have to focus on limitations came more change. My focus was turned outward. This once again allowed me to focus on the important things in life and LIVING, instead of the internal fears that were whispering. It also helps keep the "pity parties" at bay. Like everyone else I worry about family, friends, my job, building my business, bills. The day to day hum drum of getting through each day. Finding time and there never being enough. Visiting with friends. ALWAYS searching for more quality time with my husband. Yet, these are the worries I WANT to have. One thing about MS, it sure changes "worrying" and really brings home the saying, "Don't sweat the small stuff".

Chapters One and Two.....what MS has taught me.

I wouldn't be who I am if I didn't continually seek to find the positive in every experience. It's just the way I'm "wired'. I truly believe that every experience we are Blessed to have, be it positive or seemingly negative, ultimately brings about good. Whether the "good" means learning to allow others to help you, learning patience with yourself or others, or simply having your priorities refocused as a result of hardship. It doesn't mean the experience was any less painful getting though, but it's the learning and acceptance of the lesson, that for me, somehow makes the journey bittersweet instead of just bitter.

That's the way I look at my journey with MS. Prior to MS I was a very independent person (Well, I STILL am, just a kinder, gentler version....right honey??), who had a very difficult time accepting help from anyone. Even family. After all, I was tough. I could weather any storm (and boy I had weathered some big ones) on my own, figure out my own problems and besides, wasn't accepting help a sign of weakness??? My focus was on having a secure career and being financially independent. Then....WHAM.....MS.

Suddenly, life changed. Nothing was as it appeared to be. As it was SUPPOSED to be. My life suddenly became two distinct and different chapters:

Chapter One: Life Before MS.

Chapter Two: Life After MS.

Wait....Life AFTER MS? Doesn't that imply that MS LEAVES...it goes AWAY? HAH! Let's try that again:

Chapter One: Life Before DIAGNOSIS of MS.

Chapter TWO: Life After Diagnosis of MS. (Sub titled: Trying to live your life and not allow the absolute fear of becoming a burden on those you love consume your life).

(OK MS may have "tamed" the independent streak but I never said it tamed the sarcastic sense of humor....I hope it never does)!

In the midst of exacerbation's, shots, TWF, I.V. Steroid infusions, falls, canes, walkers, MD appointments, etc., etc., etc. MS has taught me many things:

It taught me patience of self and others.

It taught me that as I have loved unconditionally, others have loved me. I just never allowed them to show it.

MS taught me that by allowing others to help, it actually helps THEM deal with my disease.

Most importantly, MS taught me that leaning on others doesn't make me weak or a burden. It makes me HUMAN.

Finally, and perhaps the greatest lesson MS has taught me: The greatest gift we can give to those who love us, who watch us literally stumble and fall, is to LET them HELP. Being there for you when you stumble, reminding you to take your shot, or gently telling you to sit in the recliner and rest a bit is their way of saying, "I love you, I'm here".

For me, MS hasn't just taken things FROM me.....it's GIVEN me things too. Better perspective, patience and a much deeper appreciation for family and friends.

Energy conservation and TWF

What a difference a day makes! I feel 100% better than I did yesterday. I slept well and woke with a wonderful energy level.

Of course, I'm also aware that this "energy level" is something that must be nurtured and taken care of. Utilized in small measures and rationed. Before I learned that, I would bound out of bed, thrilled to be feeling "normal" in terms of energy. I'd cram as much activity as I could in the shortest amount of time. Run all my errands, clean the house, throw some laundry in...and the result? MAJOR crash and burn. TWF (Train Wreck Fatigue) would roll into the station and take me out with it. It would take me DAYS to recover.

Now I know. Pacing myself is the key. When my mind and body thinks I have the energy to do four things...I do TWO. Then rest. A few hours later, if I feel I have the energy to do three things, I do ONE. I find the energy I have lasts longer and I'm actually more productive. Instead of trying to cram everything in before the energy runs out, I take my time and get things done without TWF arriving.

Of course, this is MUCH easier said than done. Especially if you have a family and work. (I have a wonderfully supportive husband, a full time job and am building my own business). So, how do you manage it all? Conserve energy, avoid exacerbation's and LIVE your life??? Good question. My answer: Through Faith, Hope and the love and support of family and friends. Some days are better than others. Thankfully, I have many more good days than not.