Actually, The Start

The truth is that multiple sclerosis is a most confusing, progressive, debilitating, depressing and unpredictable disease. No two people suffer with it exactly in the same way. Once you’ve got it, it is like you are waiting for the other shoe to drop. A flare-up can happen at any time. These flare-ups can last for weeks. Experts can only go by the majority of incidence reports as to what a sufferer can expect. The medicines out there can only help slow down its progression maybe by 30-35%. On a good day, this statistic seems better than 0%. On a bad day, like in the middle of an exacerbation, you realize that 65-70% of the time you are on your own. Bad odds, even for Vegas.

This blog represents my efforts to come to terms with this disease. I hope I can reach others who might be silently doing the same. The adage “misery loves company” certainly applies here. Each post will deal with a certain aspect of the disease, and how, maybe, we can offer each other some help as how to fight it. Hopefully, others will offer advice, too. A physical location support group is good, but for those of us who can’t get to one, a virtual group is good, too.

I’ve had MS for 13 years. I’m going into the secondary progressive stage now. There is no medicine on the market for this phase as yet, so I am still taking Copaxone. I decided to start this blog as a way of coping. When I saw the latest issue of an MS magazine, and saw smiling faces on the cover, and then threw said magazine against a wall, I knew it was time to get a grip. Rationally speaking, who wants to see unhappy people looking back at you? Absolutely no one. But then my thought was, when do folks start reporting the deep struggles sufferers have with this disease?  Sometimes we don’t have smiling faces.

I am worried about my future. Is there anyone out there that is tired of keeping up appearances so that others will feel okay about what’s happened to our lives? It’s heavy to carry that around and I’m tired.

More, next time.

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