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

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borrelioburgdorferii
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Date Joined Feb 2017
Total Posts : 209
   Posted 3/7/2018 7:07 AM (GMT -6)   
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)


WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1672
   Posted 3/7/2018 11:37 AM (GMT -6)   
I get it. I really do. I'm sorry for what you're going through. It's great you're finding a way to sort of change careers. I haven't figured that part out yet. I had to file for retirement under disability and now have to wait for up to 18 months to even get a decision. I did have enough money to hire a lawyer though, so at least I'm not handling all that. I couldn't have. I panicked and had overwhelming anxiety just doing the part I had to do, and sometimes I get like that with doctors appointments, too. My brain and psych symptoms have been better lately, so I'm thankful for that.

I understand about family. I have elderly parents who need my help for some things and my parents fuss a lot. All that drama wears on me. I also have chemical and mold sensitivities that they unwittingly contribute to. But I need them and they love and support me in every way they're able to.

Hope your circumstances improve and come here for support anytime you need to.

Girlie
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Date Joined May 2014
Total Posts : 32559
   Posted 3/7/2018 11:39 AM (GMT -6)   
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?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 209
   Posted 3/7/2018 11:53 AM (GMT -6)   
Thanks for the reply, as it seems that any coping skills I may have had have been worn raw by this disease, like I can't even handle normal every day stuff, and it all gets misunderstood as some moral failing (like why don't I just pick myself by the bootstraps etc) can't even figure out a simple car repair, and I'm exhausted before I can even break a sweat, so frustrating.

And so confused and angry about a request for more info that I would rather not never apply ever again if I can help it.

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 209
   Posted 3/7/2018 12:04 PM (GMT -6)   
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.

Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 3/7/2018 12:16 PM (GMT -6)   
Hang in there dear friend (which probably sounds like one of the most unhelpful phrases to you right now...if so, I completely understand that!)

Try not to be hard on yourself.

When I feel like others are expecting the "real me" like old times, I try to think that I'm still in there, just temporarily bound up.

I also try to convince myself that it's not actually others who expect the "real me", but me expecting myself to just pick up where I left off. In doing this, I then adjust my own thinking, excuse my own current shortcomings as nothing more than symptom. Somehow this seems to alleviate my perception of others' expectations.

It's hard though, because in the end, it still feels like we are letting everyone down. All we can do is our best, and not worry about the rest.
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

NotQuiteAntonio
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Date Joined Jan 2015
Total Posts : 1134
   Posted 3/7/2018 4:06 PM (GMT -6)   
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.
Do the work, be the prize.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 3/7/2018 4:22 PM (GMT -6)   
Well said Antonio!

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 3/7/2018 5:02 PM (GMT -6)   
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...)

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1672
   Posted 3/7/2018 7:53 PM (GMT -6)   
Some really great posts here. Profound words.

Antonio: "life doesn't wait"

That hit me hard. I've dealt with many regrets of missed opportunities of things I didn't do in years gone by. I've lived a cautious life for reasons I didn't understand until I learned I had Lyme. When I feel pangs of regret, though, I've learned to ask myself if I had the opportunity again, would I do things differently. Most of the time, if I'm honest, the answer is probably not. Sometimes it feels like I'm two different people. I have a deep, adventurous side that longs to experience life to the fullest, but the dominant everyday me is too cautious, apathetic, or fearful for that kind of adventure in reality. I'm rambling. I don't even know if I'm making sense.

In 2015 when I got so much sicker, I kept putting things off, saying I'd get to it when I got well. Then "well" never came and another year and a half went by and I learned I had Lyme. You're right. Life doesn't wait. It just keeps on going with or without us. I have to accept that physically and mentally I can't do what I used to do or what I want to do. Whether that will change or not, I do not know.

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 209
   Posted 3/8/2018 1:57 AM (GMT -6)   
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)


borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 209
   Posted 3/8/2018 2:07 AM (GMT -6)   
WalkingByFaith thanks so much for your reply in this time of lonely reflection....

WalkingByFaith said...
I've dealt with many regrets of missed opportunities of things I didn't do in years gone by. I've lived a cautious life for reasons I didn't understand until I learned I had Lyme.
And Lyme has its own trepidation effect, literally causes irrational fear as part of the illness, as I used to be super adventurous, risk-taking and athletic, now practically the opposite, but occasionally get a glimpse of my "potential" again. For me I feel I keep putting off the drastic changes and massive healing I need to undergo to do this, it seems like it might have to happen somewhere else, and anyway it's wise to not take so many risks, we get older and wiser hopefully anyway.

Post Edited (borrelioburgdorferii) : 3/8/2018 1:14:45 AM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32559
   Posted 3/8/2018 2:18 AM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 209
   Posted 3/9/2018 10:59 AM (GMT -6)   
Girlie and Others, for me I'm not sure I ever got a career off the ground, I mean I started in a few directions but never became so much of something, as a profession that would have been my identity.

So it's not like I went from being super-successful to losing a billion dollar business or something, it feels like more struggle added to what was already difficult, than having it all, like things were going great and losing tons. Things weren't ever so great, I never had much to begin with.

Rather than have this illness take over and define my life, I'd rather make this a side chapter, and be able to make it through successfully, than what it seems to affect so many things, and to where as NotQuiteAntonio has eloquently written, we are NotQuiteOurselves anymore after this.

I mean when I was a kid and teenager I hit my head pretty hard, took some risks and I'm probably was never the same again, and then to get a tick bite and have that happen again to another degree.

Anyway I'm happy to have some aspect of my health intact, like my eyesight and mobility which can be wonky at times.

But I think our symptoms point to something more specific and unique to this disease co-infection/complex: that of derealization, depersonalization, unreal feelings, personality changes which are very real neuropsych effects brought on by organic disease, unfortunately for us.

Anyways, guys and gals, be strong and thanks for being there! And I hope you can find understanding people around you.
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