WHAT MS HAS DONE FOR ME

Anybody who has MS will tell you what a pain this disease can be, both literally and figuratively.  The brain fog, pain, fatigue, temperature sensitivity, bathroom problems, banding, mobility issues, speech problems...it just keeps on giving.  Don’t even get me started on what it does for women who are also going through menopause!  The side effects from the high-powered meds can be just as devastating.  They can cause platelet and other blood levels to drop as well as complications for liver function.  The potential flu-like side-effects can be loads of fun too.   

All this and the fact that it’s virtually invisible to the outside world make MS the party you wish you hadn’t attended.

Still, the meds are good!  I just got done with my fifth brain MRI in nine years.  The results say that the disease hasn’t progressed and my bloodwork tells me that I’m not suffering from the more serious side-effects at the moment.  For this, I thank God, my family (genetic, church and otherwise), my doctor, good medicine, and pure stubborn determination.

Yes, there’s a positive...a flip-side as those of us say who can remember what a 45 RPM record looks like. MS forced me into a few things I’d like to share.  Here are the positives...yes, positives!

1.  Upon realizing what MS banding does to my stomach after a full meal, I decided to lose weight.  I lost fifty pounds and have mostly kept it off for the last seven years.  It helped.  I still feel that tightening when everything pushes to my tummy but it’s not nearly as bad.  As a bonus, my blood sugar and blood pressure are lower. 

2.  I began to exercise regularly.  I do yoga every morning and ride an exercise bike at night. I really think this has been a huge factor in keeping me going.  I’ve never been flexible but I’m a lot more flexible now than I was when I was in my twenties.  It’s always a hoot to watch the reaction I get when I’m able to get up and down without stumbling.  People who know about the disease don’t expect that and it’s a small victory for me.

3.  I am proactive about researching what’s good for me and what isn’t.  I've learned a lot about acupressure and alternative ways to handle pain and maintain health.  

4. I try to eat more healthy and organic foods and I avoid aspartame and other artificial sweeteners because I’ve seen what they do to my system. 

Except for the MS, my general health is better than it ever was before.  I don’t think I would have accomplished most of it if I hadn’t been pushed into it because of MS.  So there is a silver lining.  I’d love to hear about yours!

Fear and Multiple Sclerosis

It’s been a while.  I’m great with fiction but when it comes to blogging it’s just empty air with a few words scattered around unless I have something important I need to convey. So, yes, it’s been a while.

This morning, our priest, Father Furman Buchanan, made a comment in his sermon that struck me as very important.  Along with a thousand other things, I love and respect Father Furman for his ability to tell a wonderful story and his unique take on life that seems to clarify so much.  Forgive me for paraphrasing; if I’d known how important this would be, I’d have written it down.  Father Furman said that fear is a normal part of our lives.  The way we handle it, makes all the difference. 

It occurred to me that when you have a chronic disease like Multiple Sclerosis, fear is a constant.  You worry about the new ache in your back that wasn’t there last week.  You worry about the fact that you went into a brain fog earlier and couldn’t remember the name of the guy you’ve known for ten years.  It was on the tip of your tongue and you just couldn’t spit it out.  You worry because you tripped going across a completely flat surface. You wonder if these are temporary MS symptoms or if they are the beginning of something bigger.  Or, even more disturbing, could this be a sign of some other, strange and frightening ailment in the initial stages? 

I’ve had nothing short of miraculous health for an MS patient.  I suffer from pain, banding (MS hug,) fatigue and a number of other issues, but I’m still quite mobile and do mostly what I need to do.  Yet, when Annette Funicello died from MS complications, I kept seeing her in that chair, needing assistance for everything and fearing that I, too, would be there one day.

 

Let’s face it, I’m a worrier...my bitten nails are proof.

So what do I do about fear?  How do I handle it?

1.  I inform myself.  I read everything I can about whatever is bothering me.  I also try to remember that not everything you read on the internet is factual.  You can contract lung cancer if you check the internet for symptoms of your chest cold.  So use reason and don’t let your imagination get the best of you.  Being informed gives you a head start and helps you know your options.

2. I ask my doctor.  (I have a real fear that my doctor is going to tell me something I don’t want to hear, so this is a tough one for me.)  I write down my questions so I’m ready whenever I get to sit down with my neurologist.  He listens and really tries to allay my fears.

3.  I take my health seriously.  I do yoga, and ride an exercise bike every day to keep in shape.  I take Vitamin D and other supplements that seem to be beneficial.  I watch what I eat and keep a look out for new developments that might help me.  Taking an active part in my health is something I can control and for a control freak like me, that’s important.

4.  I meditate.  That’s right; I really believe that positive imaging and positive thought go a long way in making me feel better.  Mind over matter is a very big tool when handling pain and uncertainty.

5.  Along the same lines as meditation, I pray for others and for my own health.  I have a list of people that I pray for daily and many that come and go.  I’m an Episcopalian, and we tend to be a very loving, accepting lot, so I know others are praying for me, too.  When I pray I feel connected to a world of people who care for each other and that somebody stronger than myself has a hold on the situation. 

6.  Finally, I challenge myself.  When I feel really bad and fear the worst, the temptation is to take a nap (which I sometimes do) but I find that involving myself in projects to help myself or somebody else, will actually alleviate some of the physical symptoms.  When I’m writing, or helping someone else, or going shopping with my husband, I forget the worst and get on with my life.

For MS patients, fear can be a constant but that doesn’t mean you have to give in to it.  Live your life and take care of yourself so others won’t have to.