this is an interesting article originally shared by Suzie Cohen on her Facebook page. From my own and my family and friend’s experience with Lyme this really rings true.
i am in th middle of another set back and feel horrible. What is frustrating is that I just don’t understand why. At this point driving 8 hours over two days, attending a concert and getting a little dehydrated should not put me on the floor.
The last couple days I have felt so fatigued and weak I can barely function, plus my inflammation/water retention is way up, my brain is fuzzy and my emotions feel out of whack.
I really don’t get it. I did eat some different food being out of town, but nothing “bad”. Alright yes I did have some bacon from Whole Foods that turned out to have some celery powder in it, and I did have a little chocolate. But is my body so highly sensitive that I end up feeling like I’ve had a 6 month set back? This is ridiculous and needs to stop.
I don’t even know what to say.
Photo I took Saturday
so I suddenly realized I had not shared my latest update yet;
I had my 1 year check with my Lyme doctor in Idaho Monday the 2nd and he couldn’t find any Lyme! Or Bartonella, or Babesia, or any of the other little coinfections…. (!!!!!!)
This is wonderful. I am feeling pretty good overall, although I have to bide my energy and listen to my body. I am still having horrible reactions to most foods, and still that horrible swelling/water retention, but that is a process. Again I am working with a clinic and 2 NDs on the autoimmune part of this since my body has been in a state of high reactivity for so many years. I am still having systemic reactions to a lot of foods and I am very chemical sensitive, etc. So it is going to take some time and effort to calm everything down. Healing the leaky gut is a big part of this and dealing with the DNA aspect of targeted nutritional therapy. But I’m getting there! Only a few IVs left to go… At least less poking is in my imminent future 😉
Something I wrote about 2 years ago when I started this blog….
Little Lost Girl
The Other Toll Of An Auto-Immune Disease
At some point I stopped looking in the mirror; of course not quite literally because I need to do my hair and makeup in the morning, but a long time ago I stopped “seeing”. So it was a bit of a shock when one day I actually did see, and I didn’t recognize myself. I look old, I look sick, I look puffy, I look fat, I look frumpy. Gone is the girl I see in photos from several years ago, and not just physically, because that girl had things she enjoyed doing… people she wanted to spend time with…she had an inner passion for the things she loved, and had so many hopes and dreams….
I look in my closet and there are the clothes that I no longer wear, the digital camera that I have never used, the containers of craft materials that I no longer have an interest in….because life used to be not only about today, but about tomorrow too. Now I struggle to get through just one day at a time, just surviving, there is no energy for anything else, and it is more than physical, my brain is tired too. I used to love crosswords, but sometimes it is too hard to recall the words I know that I know, or to spell words that I know are locked somewhere in my toxic mind. People are too hard to be around, not because I don’t like them, but talking and engaging takes mental energy, and that is easily used up doing my job everyday (thank God He has given me the strength. So when I am quiet and don’t feel like talking, I am more than likely not in a bad mood, and it has nothing to do with you, I am just shut down.
I miss my personality; it is actually hard to recall who I am. I know I used to enjoy so many things, but I am not sure what they all were. I think that I will need to rediscover myself, and see what emerges when the chrysalis of illness falls away.
So, I am writing this not to whine nor for pity, but just to share what chronic illness can do to the core of who you are as a human being. My sister and I talk and share all the time about what we are going through, and how what we are feeling affects us socially and mentally. How each of us wants to tell everyone we see from our friends to people in the grocery store “You don’t understand, this isn’t me, I’m really someone else…”
But thankfully there seems to be hope. Treatment has been rough, and the different medications aren’t fun, but I believe that finally after possibly two decades of having this garbage in my body and not understanding what was wrong with me, there are answers. I have been told by my two doctors and even by friends and acquaintances that next year everything will be different. I want to hope so badly that this will be true, and if it is, I might emerge again, but will I be who I was or a little different? We shall see…
This is an excellent essay