Here an inch, there an inch, after while a mile
It is a very long time since I wrote a blog, so please forgive me if it is a ramble. As MacKintosh says, many of us have moved back into real life. I certainly have. But there is so much need here on this incredible site that those of us who have had so much returned to us have a real obligation to try to give encouragement to those who are struggling with this horror.
In one month, it will be seven years since I began this undertaking. I have been through almost the whole thing for a second time. Every day I still take all five abxi and all my supplementsi, but my improvement is still happening. I lied in that sentence - I stopped ALL abxi for two days last week. Never have I missed a dose of any abx (except twice over the years when I simply forgot one or two). I did it for two reasons: one is to see if it made any difference in my walking (which is pretty good), and the second is that it was Alpine Show Day at the Nationals in Springfield, Massachusetts. We did ok, the news being that I drove 950 miles, did the whole wonderful week there, including showing all day, and drove 950 miles home. We drove though two nights on the way up because of the heat, stopping at a friend's home to let the goats out, sleep, and milk. We never leave our goats away from home, so took a nap on a concrete floor on our sleeping bags, not bothering with our cots.
This second time around has been somewhat easier that the first. I have an unknown number of months to go, but never, seven years ago, expected to be up walking around breathing. I had graduated from a cane to a walker, had disastrous vertigo which was inexorably worseening over the years, was having a very hard time swallowing, my mind was a swamp, and my fatigue was unbelieveable. My sister had found David Wheldoni's site and for whatever reason, I had begun on Rifampin and Doxyi in September, 2004, then added flagyli in January, 2005. Enough about that - it is in my blogs.
Yes, we get worse before we get better. I never had an "exacerbation", since I am PPMSi, but was going straight to hell. I am compelled to list some of my symptoms that are gone, because I see them here again and again. Gone is my vertigo, which I had for decades, getting worse forever. Gone is my iritis of twenty years, which my ophthalmologist had never had happen before. Gone is my hair loss, my difficulty swallowing (my husband had to do the Heimlich twice on me), my annual lung infectionsi, my sinus problemsi, incontinence, constipation, and skin melting off, and the total numbness of my right side. And, maybe best of all, gone is the fatigue. I will probably never again have the amazing energy that was mine daily until MS, but I have more than most "older" (I am 71!)people. For all the brave, wonderful "newbies": stay with us - yes, this is hard and long and scary, but, as we also say, the alternative is much worse. I have been there and I know.