Just Venting Frustration: want to save myself and get well, paperwork is intimidating...

Feel like my brain is numb and went through a worm hole something like Will Ferell in Land of the Lost. And oddly I feel incredibly well on certain days, sometimes hours at a time I feel strong, like I could resume training for several sports I used to excel at. And within the same day I am overcome with debilitating anxiety and inner trembling, dissociative feelings. (I was a promising athlete at one time..is it not that far fetched to get well again?) Have a lot of other things going on, family leaning on me to be stronger but seemingly only for them, rather selfish of them, sometimes I think I may be be better off alone for my own health, if I could afford it I would go off, take a health vacation. I feel that a large part is the cognitive dissonance of the environment I'm in, delayed diagnosis into oblivion, and I feel that the low level care is becoming more toxic, so now I'm working on making enough money to leave.

edit:

Sorry if no one can relate to this, we're all different. I was really ambitious and even started achieving some goals, and want to continue but it's like there's the assumption that I should be my old strong self as if I'm not damaged from going through this: plus that added insult to injury that doctors refer me to psychiatrist because they have little option or incentive to do otherwise. Anyway I feel like these complaints are old hat, and I'm ready to move on with my life. I've sort of changed careers to something with less stress, if I'm lucky I will find a way to do well and help those around me in some way.

To clarify, I just think living alone would be better for me even though I have family who claim to help me, though they also need help that I'm mostly unable to give..if that makes sense.

and I'm stressed about finances, already feeling vulnerable and now the burden of proving my low income to people who have a vested interest in not making benefits easy to get (food stamps, health care program)... it's made to be so frustrating and difficult that people would really rather not even apply.

Post Edited (borrelioburgdorferii) : 3/7/2018 10:37:49 AM (GMT-7)

Sorry to hear how much you are suffering, borrelioburgdorferii. And, I understand that sometimes family members just can't relate to what we are experiencing.


i can't help you with the paperwork...and all that as I am in Canada and it's different up here.

Is there perhaps one person close to you...one that is most supportive...that you could ask to help you with this? Even a friend outside the home who won't take it personally that you want to leave?

Thanks Girlie for lending an ear anyway and understanding, that means something when I need more hope to look for.

I've lost touch with all or most of my friends, being broke and sick can hasten that. Not that they wouldn't remember me, but maybe assume I'm some casualty of life by now. I saw a therapist for a few months who seem to understand my workaholism to escape a toxic environment, it cost a few dollars to see that therapist--but I need every dollar for gas, insurance or rent if I'm to be able to move somewhere else.

I've got a few ideas yet, I'm going to try, so all hope is not lost.

The only person that knows who I truly am is my girlfriend. Stayed for years. Super lucky, I know. Not sick. Super careful to not get her sick. Though, that's another topic entirely.

But, the only person who really remembers who I was before all of this is me. Apart from you guys, I'm alone in this. Heck, even with you guys, I'm still alone. You're all awesome. The love and knowledge shared here is a blessing, but I spend the majority of my days bearing this illness alone. The same is true for most of us.

You mentioned friends. It's sad, I wouldn't say I have any real friends. I don't have many close relationships in general, family or otherwise. Just the one. I haven't for many years.

Though, having forced myself to come out of my shell more over the past couple of years, there are a few people who have given me their numbers, added me on Facebook, offered to go out together, but it's just strange for me.

On one hand, I don't remember how to be a friend to someone. On the other, I don't know how to show people the sides of me that I hide.

Will they understand? I don't really want to go through the conversations of "what is Lyme?" or "well, Google says this..."

I don't know how to feel about that. I don't really think of myself as a loser or anything. It's normal to have friends, but I understand why that's not the case for me at this point in my life. I don't want to deal with that right now, anyway. If it happens, okay. I'm not going to seek it out.

I'm nice to people. I help out. I try to do my best as far as socialization goes. I'm not ever going to be the one to initiate any kind of activities outside of school or work, though.

I'm not gonna share anything about my health situation, apart from that I don't eat a traditional diet d/t GI issues. I have to address that, because food is a common bonding item for people. Want to get some coffee? Want to go out to eat with us? We're having a pizza party today? Et cetera.

It's a shame. We all wish we could be the people we were before Lyme disease. Do normal things. Whatever. The ideal lives pictured in our heads.

I won't say it's impossible, because it's not, but it is a challenge, and there are often many doors that need to be opened in order for a person to say that they're themselves again.

Part of me questions whether I really remember who I was at all. Will I know "me" when I see him? I don't know. Part of me questions whether that even matters. At this point, I am who I am. I'll have been infected ten years this summer. I was 16. I've spent more of my life sick than I did, like... fully aware, with a developed mind, capable of abstract thought, the ability to understand myself, life, etc. I'm more of an Antonio with Lyme disease than I was without, if that makes sense.

It's just a huge part of my life. I pray for the day that's not the case, but I'll forever be marked by it. There's no changing that. I hope that I'll be able to be free of it for the most part, not be hindered, but I don't think I'll forget for the rest of my natural life.

We work towards who we stand to become, our potential, etc. It's not about who I was anymore. It's who I am, the good and the bad, what I'd like to change in order to be who I stand to be. Again, my potential.

Don't be complacent with your health - keep fighting, but when I think about it, letting go is a part of the process. That sounds bad, because... of course, you want to be yourselves. You want to be whole, right? I get it, and I'm not trying to wrong that necessarily so much as just say it's about going forward, not back.

I've never experienced a huge jump in my health, so I don't really have the authority to say this: you're really lucky, if you can say that you're completely healed, and there's never a thought of Lyme lingering in your mind. Those people are rare, I feel. You see the ones that come and go, last seen a year ago, and... yeah, they're better, most of them. We talk about suicide, sometimes, but that's the slim margin. Most of us cling to life. So, yeah, people do get better, but is it truly 100%? Do they really never think about Lyme? Not have one little residual effect? I don't know. I wish I did. I see people talking about 90% better, 98%. That's amazing to me. I would take that. I'd gladly live with, say, 80 and stay on maintenance protocols for the rest of my life, if that's all that I were allowed.

You're here. It hurts, I know. You miss certain things about times passed. People, places, feelings in your heart. The voice inside your head speaks to you a little differently, perceives the world around you in ways that aren't always to your liking.

Keep fighting. Cut out the negative influences, as best as you can. Treat. Take the rests you need, but push yourself to grow what you can, because life doesn't wait.

My perspective might be a little different. For whatever reason, I've spent a lot of time in a limbo of sorts. My doors just won't open. This could all be a distant memory for you, a year from now.

NotQuiteAntonio,

That was an awesome post! Loved this:

"We work towards who we stand to become, our potential, etc. It's not about who I was anymore. It's who I am, the good and the bad, what I'd like to change in order to be who I stand to be. Again, my potential.
Don't be complacent with your health - keep fighting, but when I think about it, letting go is a part of the process. That sounds bad, because... of course, you want to be yourselves. You want to be whole, right? I get it, and I'm not trying to wrong that necessarily so much as just say it's about going forward, not back."

You totally nailed it! I often have to remind myself that the goal isn't necessarily to "get back" to my life - but instead to move forward...Letting go - of the aspects of ourselves we don't need anymore and becoming stronger/more aware - that can be such a positive thing...in that view, it makes sense why we don't "go back" to our "old selves" after Lyme...Through the process, we tranform. There's no going back, but I have to believe there is a lot to look forward to as we move towards health...with all of the insight gained from the experience of disease. (Doesn't make it any easier to live through in the meantime, though...)

NotQuiteAntonio, your post makes a great deal of sense to me.

*not to trigger anyone about a tick bite, but in the new re-make of Land of the Lost there is a scene where an oversize blood sucking bug is biting Will Ferrell's character as he plays the banjo and he is asking everyone around what's going on and they are trying not to react to this huge thing on his back until he passes out * it's a funny scene but it reminds me of having to deal with this fatigue and everything else with it... Land of the Lost: Mosquito Bite
https://www.youtube.com/watch?v=ab35qS6GfW0

your post is motivational Antonio and I appreciate it, it's understanding. Some of us will never be 100% what we used to be but then who is really? I like to think there are more positive outliers possible, and I want to be one of those. There are times where I wish I would have just gone home and slept instead of working too much, now the more money I make at self-employment the more I have a choice. Maybe I can get strong enough for more adventures, perhaps healing will be included in the journey.

Well here's to more clearings of the brain fog, and more wellness days, and hopefully a return to some much-loved activities again. Thanks again for your understanding and empathetic words.

Post Edited (borrelioburgdorferii) : 3/8/2018 1:00:18 AM (GMT-7)

NQA - What a thoughtful, insightful post. I always look forward to reading what you have to say.


"Part of me questions whether I really remember who I was at all. Will I know "me" when I see him? I don't know. Part of me questions whether that even matters. At this point, I am who I am. I'll have been infected ten years this summer. I was 16. I've spent more of my life sick than I did, like... fully aware, with a developed mind, capable of abstract thought, the ability to understand myself, life, etc. I'm more of an Antonio with Lyme disease than I was without, if that makes sense."


Yes, I have thought that as well..."Who was I? Who am I now? "

I have said in the past to my husband..."When I'm better...how will I jump back into my life?...How do I go about it...I've been on the outside - looking in for 5 years now"

I am nervous about going back to work...where I'm sure everyone thinks I am gone for good.