How long since you had a normal life?

I've been mostly couch ridden for a year now. In the last few months, I've had slightly better energy, but I still wear out very easily. On my bad days, I'm in bed all day. On my "good" days, I try to do a little cleaning and get maybe get about 10-15 minutes in before I have to rest. I certainly can't go shopping or to a movie. Walking down to get the mail makes me feel fatigued. I still can't drive and being around people is exhausting.

How long has it been since you've had a normal life or anything resembling your old pre-Lyme life?

4 years for me, too. makes me very sad.

If normal means symptom free, last summer before the relapse I had about a year and a half of normal. However, before this whole thing began I'd say 9 years (with times of remission).

I still work and do normal daily stuff, I just deal with symptoms as they come up and try not to let them bother me too much. Some days are easier than others.

Jason

Post Edited (JasonSinis) : 8/2/2017 5:19:58 AM (GMT-6)

My life is normal. My body is not.

little over a year and half.

honestly ?

I FEEL LUCKY!

Imagine all the people that are sick with this and are treated for something else and they get worse and worse ...

How long since normal health? Mmmm late 1980's, maybe earlier. I had many ticks on me in my younger days - with the symptoms.

I had my ups and downs all this time, did the best I could. Still managed to make some life achievements, but some weren't possible either. When life gives you lemons you have no choice but to try to make lemonade.

I dont remember what normal feels like, but I've been on my way towards normal for about the last year.

Hate to possibly jinx myself- but feel best ever right now since I was a late teen.

4 years ...i was bedridden and couldnt lift a gallon jug...last weekend did two weddings a drove a motorcycle . It gets better ....i treated with everything under the sun !

I've never been normal

With Lyme, I dream of the day I feel normal. I think part of the secret is to embrace your "new normal." Will I ever go back to eating the pizza buffet or camping without anxiety? Probably not. But I do look forward to being "reborn"- emerging into life again after feeling like Lyme has stolen it from me.

I felt wonderfully normal just last week, when I had a good bit of social interaction and was able to take a walk every day, and had some ambitious thoughts and productive hours. That wonderful normal also included 3 dozen pills every day, no gluten, dairy, sugar, corn, soy, and a yeast infection. It doesn't bother me when my mood is good.

Had a pretty bad morning, but found that the good thing about being distracted every 5 minutes is that sometimes I can distract myself out of fatigue and a stomachache.

I dunno... I feel... mightier... since battling Lyme. It super sucks and my life will never be the same, but learning to roll with the punches isn't a bad thing.

Mostly, I'm thinking of myself a year ago, reading these threads and sobbing "omg I can't do this for 7 years!!!!" And I want people like me to read my posts and think, "there is a light at the end of the tunnel. And no matter how LONG the tunnel is, there are lights inside, too."

Aerose91 said...
2011. Ive been completely mentally and nearly completely physically disabled since then. I was 26

Aerose91: I'm so, so sorry to know you've been (and, still are) suffering for so long. I just read a few of your recent posts and it seems you've only recently started being treated. Is that true? I pray that you get the help you need and find the healing you deserve.

The Dude Abides said...

Aerose91 said...
2011. Ive been completely mentally and nearly completely physically disabled since then. I was 26

Aerose91: I'm so, so sorry to know you've been (and, still are) suffering for so long. I just read a few of your recent posts and it seems you've only recently started being treated. Is that true? I pray that you get the help you need and find the healing you deserve.

That's very kind of you. After 5 years i finally got my diagnosis of bart from an LLMD but he was horrendously expensive and i lost my insurance soon after so i was never able to take abx under him. I spent the next 2 years living off the grid in a tent in the desert and for the first time since 2011 found a little peace in my disease. I detoxed heavilly out there and am now able to maintain a slightly higher baseline but am still very mentally disabled. At least I'm not wandering aimlessly onto highways anymore though
2012-2015 were so indescribably bad I've never been able to relate to anyone because i haven't met someone who's mental symptoms were as bad. I spent years when, at my worst, it was akin to the girl from the exorcist and at my best, huddled in a ball with my head in my hands begging for some higher power to make it stop. It nearly brings me to tears thinking that all that hell for all those years was due to a missed diagnosis

I just started Buhner's protocol a few weeks ago because the only thing I've been able to afford is making my own tinctures and digging up knotweed plants to harvest the roots. Plus, it's a little more cumbersome while living in my car. I know im still an infant in treatment time but i have my fingers crossed

Post Edited (Aerose91) : 8/2/2017 8:38:18 PM (GMT-6)

I was 10 and a half months ago 85% already for 9 months.Due to bad decisions done by my LLMD(specifically stopping Abx. to soon) I am in lyme hell , functioning 30-50%.

I will start HBOT in 10 days, so fingers crossed I get more functional and up for the fight.

I love BabsBunny, I am not normal as well, never was.

The Dude Abides said...

Aerose91 said...
That's very kind of you. After 5 years i finally got my diagnosis of bart from an LLMD but he was horrendously expensive and i lost my insurance soon after so i was never able to take abx under him. I spent the next 2 years living off the grid in a tent in the desert and for the first time since 2011 found a little peace in my disease. I detoxed heavilly out there and am now able to maintain a slightly higher baseline but am still very mentally disabled. At least I'm not wandering aimlessly onto highways anymore though
2012-2015 were so indescribably bad I've never been able to relate to anyone because i haven't met someone who's mental symptoms were as bad. I spent years when, at my worst, it was akin to the girl from the exorcist and at my best, huddled in a ball with my head in my hands begging for some higher power to make it stop. It nearly brings me to tears thinking that all that hell for all those years was due to a missed diagnosis

I just started Buhner's protocol a few weeks ago because the only thing I've been able to afford is making my own tinctures and digging up knotweed plants to harvest the roots. Plus, it's a little more cumbersome while living in my car. I know im still an infant in treatment time but i have my fingers crossed

My gosh, that breaks my heart to know your suffering has been so intense and for so long. You're an amazing person for having persisted. Your strength, whether you know it or not, is beyond remarkable. If you feel comfortable doing so, would you e-mail me? I'd like to ask you some questions one-on-one. I just enabled my e-mail. As you probably know, if you click my screen name, you will see my profile and e-mail address. If you'd rather remain anonymous, I'll certainly understand and respect your wishes. Either way, I wish you the very best.

Hi, Aerose91: I just wanted to mention that I responded to your e-mail on August 3rd. Did you receive it? If not, I can re-send. If you did receive it, then no worries. Take care.