// January 15th, 2010 // No Comments » // LymeBites Blog
You know the old saying about the road to hell being paved with good intentions, so I have to say the absence for any posts this last week has been because I’ve been very busy paving. At least my intentions have been good.
As many with Lyme disease will tell you, the disease is very cyclical. For the first 6 months or so, every 22 days I’d go through a week of pure stomach torture. I’d be nauseous, get the spins, break into cold sweats and dry heave for a few days and then be back to my normal (sick) self. As the disease has progressed (just as I progress in healing, it progresses through my body) the symptoms of these cycles changes with it. What I’ve noticed lately is that my cognition seems to be cycling like that as well. I seem to have one bad week every few weeks where the simplest of thoughts are too difficult to think. Then there are days and times (like yesterday and today) where no matter what my body may be doing, my mind seems to be working. And then every so many months you have a perfect storm of cycles where they all come together at once and you feel great physically, mentally and without any oppressive fog in your brain.
The last week or two, until yesterday have been pretty rough cognitively. My memory has been worse, the smallest of jobs becoming overwhelming. If you’ve ever had a cat you know that petting them at some point they get overstimulated. It doesn’t matter if it’s good stimulation or bad, at some point they’re going to bite you. I like to compare Lyme disease to that. It doesn’t take much to overstimulate a Lymie. And when you do, whether it’s good or bad stimulation, chances are that Lymie’s gonna bite you. When your brain isn’t functioning right this happens often and frequently.
But the good news is that it always goes away. It may come back again, but at least the symptoms and cycles rotate so no two days are the same. I’ve learned during these “foggy” times to just put things aside until I can focus or deal with them again. In the beginning of my illness I would put so much time and energy into fighting it that it would only work against me. So now I feel like I’m coming out of the fog again, throwing myself into packing and moving (2 weeks from tomorrow I am moving back home to stay with my mother while I continue treatment and go on IV meds) and taking advantage of the time.
I’m wrapping up a lot of the stuff I’ve been working on for the site, and in between washing cabinets and packing cat toys I will be working on that. I appreciate all the great comments and feedback I’ve gotten on the site. As I said in the beginning, the chronically ill is at the helm of this ship so things may move quite slow, but the important thing is that they are still moving. As I work on my whole story, and other posts and articles about things over the past 8 months it seems so unreal that it has been that long.
I think back to May, and how I was hoping that what was wrong with me would be something simple like Lyme disease and not MS, and I wonder what I would have thought if I were told of the possibility of STILL being sick 8 months later, with a long way to go before getting better. In every struggle of life you will hear people saying they never would have imagined they could be strong enough to make it through that struggle. I think that goes without saying, until we’re faced with it we don’t know what we can and can’t make it through. And quite honestly, if you’re still alive you’ve pretty much made it through everything so far. Having Lyme disease would have been the same to me if I were given a glimpse into my future. I would have told you I would not ever have been able to get through it, at least not with my sanity in tact (and I’m sure the jury is still out on that one).
But the truth is that I am here, and I have made it this far. I’m resigned to the fact that I have a long journey ahead of me, with a lifetime of challenges caused by this disease. But I’m more sure than ever at this point that it’s nothing I can’t handle. I’ve adjusted to this disease so much already I’ve realized how easily I can adjust when necessary. The future will be no different.
With preparing for the upcoming move, having the PICC line put in and starting the IV meds I’m sure the next few weeks will be a bit bumpy, but I will continue to post as much as I can and continue with the development of the rest of the site. Some of the guest authors will be appearing soon, and I’m excited for the things they have to say. I will also be sharing information about the Ondamed treatment I’ve been receiving, with info from the nurse who I work with for that.
I’ve talked to a few other people who have said they didn’t find any help with this treatment, and some who have said they did. I have to say in my experience so far it has helped out tremendously. I think the most important thing to know when starting any experience with Lyme disease is that no two people will have the same disease, and therefore no two people will respond to the same therapy. That’s part of the journey one takes when they get sick with Lyme disease, finding out the many types of treatment, the many types of doctors and practitioners who work with Lyme, and to figure out what exactly is going to work for them. From there it’s trial and error. It’s frustrating there isn’t one simple cure or treatment, but the reality is that at this point all we can do is learn together and share our experiences so that others can be able to make educated decisions.
Just a quick update so you all know I still exist, and where I’ve been with the cognitive stuff recently. I’m counting on this clearing of the mind to last a while so I can pick up where I left off with my story and share more experiences of myself and other Lyme patients.
Have a happy and HEALTHY weekend. There is comfort in unity, and any form of chronic or invisible illness strips us of comfort in our lives, but together we can find comfort.