Has Anyone Heard from Rainy?

Nope - v quiet from his end for a week or so - hope he is OK

Hey running wild, thank you so much for your kindness and concern 😀

Garzie, thank you as well, I really appreciate it a lot you guys!

I'm ok but the Lyme/Bartonella (and possibly Babesia) just gets to be overwhelming at times. Especially when I (and I know this is the same for all of us) try to address other things in life as well, while being sick. I'm sure you guys can relate.

Then there's those wonderful moments (sarcasm) where you realize how many years you've lost to all of this, and it gets to be a little much.

I'm still here though, you guys are my friends and I'm not going anywhere 😀 I just needed a week or so to unplug, haha.

First and foremost, good to see a response from you, though I’m sorry you are going through another bad phase.

Worse feeling also causes the mental thoughts you are having with it - lost years, trying to do “normal” things in life. Totally get that, as I’m sure mist everyone on this site does. I have been on here 10 years now. Time flies when we’re having such fun, right?

Hang in there and keep trying. You are a great person, and no disease can take that from you.

Thank you both again and running wild, thank you for the nice compliment!

Garzie: something went wrong with the process, so I have to do the entire thing over again.

RainyCloud said...
Hey running wild, thank you so much for your kindness and concern 😀

Garzie, thank you as well, I really appreciate it a lot you guys!

I'm ok but the Lyme/Bartonella (and possibly Babesia) just gets to be overwhelming at times. Especially when I (and I know this is the same for all of us) try to address other things in life as well, while being sick. I'm sure you guys can relate.

Then there's those wonderful moments (sarcasm) where you realize how many years you've lost to all of this, and it gets to be a little much.

I'm still here though, you guys are my friends and I'm not going anywhere 😀 I just needed a week or so to unplug, haha.

I was two months from 29 when I got bit by the tick. I am now 36 and I will be 37 later this year. I had been an athlete all my life to that point. Still playing hockey and going to the gym regularly as an adult. Now? I feel like an old man. I have to calculate if I'm able to exercise. Will my exercise plan make me go into PEM? I used to enjoy pushing myself physically. Now I know if I push myself despite feeling symptoms and flarey that I i will make myself much worse. I have genetics that give me a fairly youthful appearance. However, now I have noticeable gray in my temples, sideburns, side of head. Can't hide the aging from that lol.

I could go on and on. I don't mean to make this about myself or throw a pity party. Just want you to know you aren't alone in this BS. Hopefully it gives you even the slightest bit of comfort to know you are not alone.

Lymie24 said...
I was two months from 29 when I got bit by the tick. I am now 36 and I will be 37 later this year. I had been an athlete all my life to that point. Still playing hockey and going to the gym regularly as an adult. Now? I feel like an old man. I have to calculate if I'm able to exercise. Will my exercise plan make me go into PEM? I used to enjoy pushing myself physically. Now I know if I push myself despite feeling symptoms and flarey that I i will make myself much worse. I have genetics that give me a fairly youthful appearance. However, now I have noticeable gray in my temples, sideburns, side of head. Can't hide the aging from that lol.

I could go on and on. I don't mean to make this about myself or throw a pity party. Just want you to know you aren't alone in this BS. Hopefully it gives you even the slightest bit of comfort to know you are not alone.

This helps a lot Lymie24, thank you, truly. That said, I wish you weren't in a similar position of course.

You share a lot of the same concerns I have, I'm almost exactly the same age as you and before Lyme I would always love to push myself physically. I also worry if that would mean I'm playing with fire in the future.

So indeed, it's hard to look at the future sometimes. Especially, when we are still stuck.

Thank you again for your message! And by the way, hang in there! I just know you will get out of this! One day we'll look back and this Lyme disease nonsense will all be in the past.

Girlie said...
“I was two months from 29 when I got bit by the tick. I am now 36 and I will be 37 later this year. I had been an athlete all my life to that point. Still playing hockey and going to the gym regularly as an adult. Now? I feel like an old man. I have to calculate if I'm able to exercise. Will my exercise plan make me go into PEM? I used to enjoy pushing myself physically. Now I know if I push myself despite feeling symptoms and flarey that I i will make myself much worse. I have genetics that give me a fairly youthful appearance. However, now I have noticeable gray in my temples, sideburns, side of head. Can't hide the aging from that lol. “

Do you consider yourself to be in “remission”?

Or are you still treating the infections.

I can understand how you feel.
I lost at least 7 years to this illness.
I was finally well enough to lead a normal life (including going back to work) a few years ago and it keeps getting better and better.
I do still have some short term memory issues and my upper back (scapula area left side) is still painful sometimes but it’s manageable. I am going to see a massage therapist to work on that area.

Life is good!

Hang in there! You will get there.

I am nowhere near remission and am still trying to figure out a good intervention. Still with Jemsek at the moment.

I've been keeping up with your story and I am so very happy that you have had success! I love that things keep getting better and better for you. It's always amazing when you experience that linear improvement and you are filled with hope. I hope things keep going well for you.

I've talked about it before here so I won't repeat myself but I have found peace even in my suffering. A couple years ago after I had been sick for awhile I had what I would probably describe as an existential crisis. I went looking for answers and mechanisms. Over time, I think I figured "it" out and when I say "it" I mean that really vaguely and non-absolute I've been sick a long time and I have come to acceptance about my condition. While I believe physical improvement is still possible, in fact I experienced it with Disulfiram, I have accepted the fact I might have a level of debilitated illness for the rest of my life. I am no longer stressed out, desperate, and in fight or flight constantly over this situation. Even a day like today, in which I am in a bad flare and feel miserable...can't really do anything except lay around, my mind and body are relaxed. I'm not fighting it.

Of course, I want to get better. I'd rather have health and vitality. I'd rather be active and be able to do more things. Novelty in life. Increase enjoyment. I will keep trying until I find something that helps or I'm dead. But my physical and emotional well-being no longer depends on me finding the holy grail of treatments that will magically fix everything.

Thank you for kind words and again I hope everything continues to go well for you.