My Life with Lyme disease

It's hard to give an accurate view of my symptoms and experience, when so many true statements might seem contradictory:
-Yes, I am getting better.
-No, I do not have more energy now than I had last year (in certain ways I am worse off now).
-Some symptoms get better, some symptoms get worse. Same with infections--some are going away, some are worse, depending on what I'm focusing on treating.
-I have more pain and fatigue now, but less cognitive impairment, probably due to herxing and reducing bacterial loads.
-Yes, it is normal to take years to recover from tick-borne infections. Treatment is tailored to the individual, and the infections are hard to eradicate.
-Yes, I will most likely recover or go into remission to the point of being mostly healthy. Many people who were much worse off than I am have recovered.
-No, I cannot work right now. I have tried out doing some work from home, even things that I could do on my own schedule, but it did not go well and I am not able to perform at that level. Things that are much easier than work (such as leaving the house on my own, getting dressed sometimes, or talking on the phone to a friend) are prohibitively difficult for me.
-It is more than enough work for me to feed and take care of myself. It feels like more than I can do, and I wish someone would cook for me and do my grocery shopping, but the people in my life work long hours and can't do these things for me, so I do the cooking and cleaning myself.
-Major symptoms: pretty much constant bone and muscle pain, frequent insomnia and chills, extreme irritability and emotional lability that you'd never expect from me (e.g. I kicked a hole in the door!), constant sore throat, very strict Candida diet, since unable to eat sugar or concentrated carbohydrates without extreme burping and bloating (I am afraid every time I eat that this will happen if I happen to eat the wrong thing), fatigue not relieved by any amount of rest. Imagine feeling the way you feel hours after a marathon hike or run - all the time. Depleted, not really "with it," uncomfortable, tired, muscle pains, etc.
-On the other hand, I am able to do some fun things simply because of the high they give me - going out to dinner at safe restaurants (mostly Indian), getting out of town (I LOVE getting away from my regular life) on the commuter rail. While it's hard for me to do things alone since I get tired, it's easier to go places with other people, since they will help me get home if I get too tired (and they'll carry my groceries!).
-I try to minimize my trips out of the house by combining all my errands into one trip.
-It's not that bad once you're used to it. You sort of equilibrate so that all these things seem normal. The saving graces are that my boyfriend hasn't left me (many partners can't take their partners' Lyme disease--NOT a fun illness to be around, given the mental and emotional symptoms) and that I can get out sometimes to have fun, and I can watch movies and read books at home. And eat Indian food--so lucky that my favorite cuisine remains safe for me (so long as I don't eat the rice!).
I just want to be more connected and to give people a more accurate impression of what's going on with me. I guess I am always worried that people are judging me or thinking I'm fine but too sensitive. I'm sure I look fine on the occasional days when I take hours to get ready and have someone accompany me to go out of the house. But in daily life I am just trying to survive, and there are a lot of recurrent symptoms, and things frequently go wrong (medication issues, stomach problems, insomnia, more pain than usual, etc.). It's kind of a pain but also kind of tolerable once you get used to it.

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People & Blogs

Tags:

• Lyme disease
• Lyme
• Bartonella
• fatigue
• sick
• chronic illness
• reading
• tired
• cooking
• Candida

[ryan152431]

hey there, i feel for u, i have very similair symptoms with my illness, you should try some yogurt, the sutff with the good bacteria in it like l.b. casi or w/e and stay out of tireing things like heat and sun, and eat things that u feel u will digest well. sleep and light exercise helps, sometimes just standing, i was so weak i couldn't really stand very long but i'm doing alot better now, also when ur brain is fried try sitting in the dark for aweile, good luck and lots of love

[Shanthi716]

I feel sad for you. If your problem in life prolongs, visit India, you will get mental peace through spirituality.