Friendship

One of the many downsides to having a chronic illness is how it affects relationships. I’ve been very fortunate in that family and friends have stuck by me and have continually offered support in my daily struggle. But this is not true for many.

Just the fact of our limited access to some places prevents our joining in on some physical fun especially if you are young. If you’re middle-aged like me this isn’t such a huge problem. But if you are much younger and MS has risen its ugly head, it can lead to being left behind.

I read an inspiring letter in an MS magazine wherein this young fellow living in New York City related his experience of the loss of some friends because of his disability. This broke my heart on the face of it. Living in NYC with its countless opportunities for fun must be an awful place to live if you can’t take advantage of them. My grief for the boy was short lived as I read further that he was very philosophical about it.  In his case, what didn’t break him made him stronger.

This young man was testifying that no matter what bad thing happens to you, friends that do stick around are the friendships worth cultivating. Our lives may have taken a detour no one expected, but that doesn’t mean the principles of being a good friend disappear.

So I say, look around you. Cherish the friends who love you for being you. Forgive the fair-weather friends and hope their days of strong bodies are always with them. But if they, too, ever should find themselves in a less than good place, they’ll realize the friend they had in you. It’s a terrible lesson to learn the hard way, but hey, isn’t life just one big classroom anyway?

Slaying This Dragon

Bill and I have finished Step 1 and 1/2 of the installation process for my Dragon voice-activated typing program. The reason it is not fully operational yet is because it dawned on me half-way through the voice-recognition part of tailoring the software to my voice, that I am recovering from a cold and my voice has the huskiness of a sex goddess. Realizing that this pitch of voice is not my normal one, I stopped the set-up process until my normal, uninspired, sex-less voice returns. Sigh.

However, I am confident that once I fully “train” my Dragon, it will be smooth sailing from here on out. The technology (which has been around for about ten years) has grown in popularity especially for those of us with limited hand mobility. Plus, the cost of it has dropped way down making it affordable for thrift-conscious folks like me. Sometimes it pays to be way behind the latest technology curve.

But delay in getting the latest electronic “hot thing” is not just about money. As my husband and I were installing the program, we ran into a little snafu regarding said installation. Right away, I was all for abandoning the project for fear of doing something irreparable to my desktop computer. Bill’s cooler head prevailed, he figured out the correct sequence and all was well. For me, new technology equals a rise in my stress level – no good for MSers.

Continuing to set up my profile, I was amused (which actually lowered my stress) when the prompts wanted to know if I had an accent. Do people actually know if they have one? A person once told me I did. Living in the U.S. Northeast, it seems, I’m in the habit of “dropping”  my g’s when speakin’ and lamentin’ when installin’ a bleepin’ computer program. I don’t think I do, so I entered “standard” as my accent. What really was funny to me was when it asked me my age category. I’m not sure if entering 55+ made me a doddering incompetent thus making sure the program flagged itself so as not to lose me with technical jargon, or (I like this one) it electronically senses that people my age have a better grasp on sentence structure, vocabulary, etc. and, therefore, it will treat me with respect.

So, this essay must end on an incomplete note, more details of actually using the software will follow. I guess having a disability in these modern days just means using more sophisticated technology to get things done. Those willing to overcome fear and chicken-heartedness (me) will ultimately rise above it all and enter the land of the really cool stuff!

 

Bellies and Other Things

A friend has sent yet another e-mail extolling the virtues of following the wheat-free diet regimen. For over two years now, she has periodically sent me these things inferring I could cure myself of MS. Well, for almost that long I’ve used this information and, so far, I’ve still got the thing.

To be fair, I haven’t followed the diet to the letter. Everything on the “don’t eat” list have been staples of mine since forever: bagels, toast, hot dog and hamburger rolls, cakes, cookies. Even giving up pasta was unthinkable – I’m Italian! But the premise of genetically altered wheat has a basis in fact. The wheat we consumed fifty years ago is not the same stuff we eat now.

I knew I was in trouble the moment I read “The Wheat-Belly Diet” by  William Davis, M.D. I got it on loan from my local library. Right there I should have guessed I may not be a devotee of the plan. If I thought I would be, I would have bought the darn thing. For a while, I couldn’t get past its cover:  pictured were six bagels, one atop the other. Just the sight of that made me hunger for one with cream cheese. Once I got past that, I read about the harmful effects of whole grain. Among them:  chronic illnesses, minor skin rashes, high blood sugar, and yes, those unattractive stomach bulges, or, as Dr. Davis refers to them – wheat bellies.

For all these years I’ve been telling folks my tummy was the result of childbearing. But since my kids are now having kids of their own this excuse has worn a little thin. But since I’m battling MS now, I’m motivated to be a little more conscious of what I eat. The book explains the addictive quality of this new grain, and I believe it. That’s why I cannot go totally wheat free. That and my belief that 100% doing of anything is borderline psychotic. Furthermore, drastically changing and eliminating anything totally right off the bat can’t be good for us.

So, I’m slowly (like two years slowly) eliminating wheat from my diet. I’ve got wheat-free pasta now, so I’m a happy Italian camper. Still, wheat can be included in the most unlikely places: cream-based soups, for instance. They use wheat as an ingredient. Label reading is a must and I confess to being sloppy in this regard. But I don’t have Subway subs anymore, or burgers from Wendy’s. If I slip up and do have a bagel from Dunkin’ Donuts (or one of their donuts, for that matter) I am distressingly conscious of being a bad girl. My body gets weak with MS symptoms and I call myself every bad name until I return to “normal.”

Still, I cannot pass up little treats like cheese with wheat-ed crackers, wheat-ed Cheerios in the morning, a wheat-ed burrito wrap with any filling for lunch. I think I’m about 80% percent wheat-free but I still have 100% MS. Maybe someday they’ll come up with an ice-cream diet to cure MS. I’d be all over that one! I’d even buy the book.

 

Insomnia Revisited

Here’s an update on my last post about insomnia. You’ll remember I was going to try altering my lifestyle to see if it would help me get some sleep. Well, I am here to tell you, it was a colossal failure. In fact, it is 12:43 a.m. as I write this.

I was so hopeful when I went to bed last night. Even though I was so tired during the day, I only rested a short time in the afternoon. I even sat outside later and watched my husband work in the yard. That always makes me tired watching him work. I settled down for sleep around 10:20 p.m. and woke up at what I thought must be my usual wake-up time of 3 a.m. After restlessly trying to go back to sleep, I finally gave up and got out of bed. I peeked under the towel that covered my digital TV clock and to my disgust I discovered the time was 11:39!! What the heck??

Every night since my last post I tried to improve my counterproductive ways before bedtime (no caffeine or snacks, no long naps in the afternoon, keeping the room as dark as possible). So far, it’s not working. Obviously, there must be more going on in my body preventing me from fully resting. I’m beginning to understand my cats a lot better lately (i.e. cat napping). But even they seem to get more prolonged sleep than I do.  My 15# cat, Tobey, is the epitome of “let’s lay around the house all day, do nothing, and still get 40,000 winks.”

So, checking an online MS site, they list helpful things to do to improve your lifestyle: eat a balanced diet, exercise, cool down, relieve stress…and get plenty of rest. Now, I would be happy to do that last one if I could.

I decided since I’m up anyway, I’ll finish this post, eat a 1:23 a.m. snack (what’s it going to do? Keep me up?) pay some online bills, organize my notes for a biography I’m writing, and generally tidy the house.

I’ll probably start to again get tired at about the same time my husband will get up for work. I’ll climb back into bed for 37 winks, get up and start my day all over again. I hope I don’t get excited at this prospect and have to cool down, too. I’ll then be batting only .200. Terrible stats.