A Very Looong Update

Snowdrops on the southern face of the levee facing the Chemung River, March 2006.

When I was first diagnosed, I was advised to consider masking the disease behind (vaguely) acute conditions. After a very stressful period of public denial, I chose to make the diagnosis public.

The turning point came when an acquaintance blurted out that she was afraid I had HIV. We had been exposed to a few coworkers who died of AIDS, so it was a reasonable fear. There weren’t enough prayers in the word to protect them; all shared the same lying philanderer.

I went very, very public. Not exactly "MS Woman!"--but identifiable, nonetheless.

So how does the reader benefit? After all, somebody better benefit from this site. It’s not making me any richer, younger or brighter. Here are things I experience and share, in hopes of assisting others:

Medical information and products catch my interest more than they might for a healthy person. For instance, I introduced many to the Chillow. It works wonders for night sweats experienced during menopause and by people with AIDS, as well as for MSers who need to cool the back of the neck. I use mine year round.

Again heat is my enemy. This past year I’ve gotten less use from personal cooling items like the Cooldana. However, a whole new summer is on the way. Another thing: I avoid trauma like the devil. I even drive much more defensibly than most people. And how many MSers know they should not use Echinacea or other herbs that enhance the immunological system?

I live with chronic fatigue. I sleep six hours at night and catch another one to two at midday: more on the weekend, when I don’t have to go to work. What else could I do to conserve my mental and physical energy? I was initially advised to try to sleep up to 10 hours per day in the beginning. What a waste! It sounded lovely, but proved totally impractical. Sleep ten hours and work eight? That leaves six for cleaning the house and groceries and… Not enough--never enough.

Depression is ever present and often requires medical control. This is cyclical, and I’ve learned to treat it on a day-to-day basis. My daily walks are in response to the need for sunlight and exercise. I also admit as much light as possible through the windows of my home. On top of that, we replaced all our light bulbs with fuller-spectrum ones. And I expanded my personal circle through the Internet: an absolutely necessity for my cognition and emotion. My blogs are full of references and links to these Cyber-relatives.

My body is not worthy of my trust in public. Incontinent supplies and antispasmodic drugs are a must most of the time. Lately, though, I’ve given up on the Detrol; there are too many side effects and too little benefit. If anyone is interested, I have been testing incontinent supplies by the boxful through HDIS. It’s costly, but such a comfort to experience for myself the wide variety of pads and guards that are out there. (If it’s too embarrassing to comment on this, readers can email me through my profile on the sidebar. I will be happy to reply to any email with HDIS in the subject line.)

MSers experience mood swings and weight gain/loss somewhat beyond our control. So maybe I’ll settle for a perfect 14, rather than a 10. Or maybe not so perfect either. I’m practically a hobbyist in regards to healthful eating. This is because Hypoglycemia is another of my constant companions. And some wicked food allergies, to boot.

We have drug or chemical therapy that may be painful and/or debilitating. How do I motivate myself for the needle, and to remember all the pills? The inhalers? I don’t always. I’m not Superwoman.

Families and friends misinterpret our good days, as well as our bad days. It seems no one I know has any patience for me when I’m moody or sad. That’s both good and bad. Sometimes I wish I could afford regular counseling. When I was acutely ill with clinical depression in my thirties, I was suicidal and it showed. No one begrudged me the time or money (almost!) for counseling then. When I could no longer afford it, my psychiatrist recommended “Recovery” as a proactive way to work out problems.

Relapsing-remitting MSers are always on the lookout for returning symptoms. However, even our spouses want us “to give it a rest.” But the same people scold when we don’t notice our own relapses. Daily exercise is a must for pointing up relapses. And I start everyday with a crossword, and try to fit in a few Sudokus each week. And to hell with everyone’s impression of my progress, or lack thereof, including families and friends.

So in the end, the Internet benefits from my “digital diarrhea.” The Internet is my family and my friends. And you are real, not just virtual. Karen and Jen and Darlene and Peggy and Sissy and Norma and Pam are with me constantly, through email and snail-mail, and through blog-visits. My life has expanded exponentially in this last year. Thank you and God bless you all.

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Little Pond