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Posted 6/19/2022 12:39 AM (GMT 0)
Received my mycotoxin results from Real Time Labs, my LLMD doesn't seem too concerned and told me about binders but my family is worried and ME? I can't calm down. One more darn thing after another. Scared, hopeless, angry and don't see the point in treating or fixing myself anymore and begging God everyday to just take me or cure me soon because this is beyond devestating.

I'm working OT to save and put away $ and I'm just so scared (like everyone inflation is scaring me, then to top it having a chronic illness where almost everything is out of pocket). Barely can afford my supplements, have to get them "clean" from online shops due to my MCAS, have to eat "clean" and healthy during treatment. Gas prices are hitting the ROOF, I cannot find an affordable apartment still. My car is getting older and just failed inspection.

Nobody understands this. Talking to my therapist as good as she is she doesn't get it. I guess I have to face more losses and hardships to get better. My night terrors are back. My bp is getting higher, my heart is always racing. I am scared all the time and I know its all situational. I just cannot catch a break. My therapst said my brain is wired always is in a state of fear and arousal from all this crap.

I am 37 and my life is just slipping away. My job takes all my energy ( as much as I love it and it's the only place I am happy and can relax) but that' all I can do, when I am not working I am sleeping. You cant call this exhaustion anymore. I dont know how ppl do this with children. I think having a family will be too late with my age and terrified of getting them sick, or a spouse.

I was sick a month ago with a bad respiratory infection I caught at work, still can't shake it. So much crap is going around and the pollen level in my area is still so high. My LLMD thinks it was Covid. I missed a week of work and have no more earned time (they got rid of Covid pay In March), I had to stay home an extra 2 days because my Covid test from urgent care took forever to result and I wasn't cleared to go back to work without proof of the negative test.

I don't want this life anymore.

I was never like this before I began treatment 3 years ago with my old LLMD. I feel like I died in 2019. I've had lyme for about 23 years now but was NEVER this bad. Tired of watching everyone else live a happy healthy life and celebrating positive milestones. When's it going to be me?
Posted 6/19/2022 5:54 AM (GMT 0)
Oh Sunflower I'm so sorry. I completely resonate with your statements...

"begging God everyday to just take me or cure me soon because this is beyond devestating"
"I don't want this life anymore."

I have said these exact things so many times over the last 6 years. A lot of us here are simply existing but not really living life. I don't have any infinite wisdom to share. All I can tell you is what I think and hope for all if us here. One thing I know is that we are stronger than most. With how bad and long this illness has gone on I feel unbelievably strong for simply not ending it all. There were some really really bad times in there. And honestly now when I have even a semi bad health day it puts me in like PTSD mode where I think things are going to be as bad as they once were.

I'm sorry you've been dealing with this for 23 years. That's unimaginable to me. You said you're 37. Im 33 so I had my late 20s and early 30s taken from me by this disease. Its devastating and people don't understand. They simply don't get it ...except for us here 🙂 I have lost numerous friends, I use to be the life of the party now Netflix is my life lol. I look like hell. It has changed almost everything about me.
I use to always say everything happens for a reason. If thats the case I hope we all learn our life lessons and get to move on from this disease.

I am recently spilt from my boyfriend of five years, so I am moving forward looking at the financial situation too; how am I going to afford this all on my own idk. I tell you these things not to make it about me but to let you know that life can be a real d*** I'm sure this will get edited but honestly it can be, let's just be real.

I dont have any suggestions about brain retraining because I am on a negative feedback loop too. I don't know how to think any different. My only suggestion would be to reach out to a person in your life that you love dearly and hang with them. I hung out with a friend tonight and she made me laugh so hard I was convulsing. Laughter is great medicine. Also not sure how you feel about pets but they can be really good for the soul.

Sorry I can't give suggestions about actual treatments. I've tried so much and there are no miracle treatments out there. BUT keep trying. Hang in there and I'm glad you reached out to your healing well family.

Take care.
Posted 6/19/2022 11:21 AM (GMT 0)
Thank you Wisco

I refuse to seclude myself and use this disease as a "lifestyle" but at the same time it's really taking a toll. I fear my better days are well behind me. I told my therapist it seems like I'm in prison or I' being held in captivity...sounds crazy huh?. 2018 was so awesome. I see old pictures of myself from 2018 and earlier and yearn to have those days back. I've been sick for 23 yrs now like I mentioned but things never were THIS bad. I was never the same after starting treatment in early 2019. I don't know what's normal anymore.

I am back taking Bartonella drugs again and I know that absolutely ****s with your emotions and anxiety. I am slowly tapering off Zoloft too, weaning off psych drugs can really be a separate war in itself.

Most nights I am in bed by 6:30pm. It's summer and stays lighter out much later, I hear my neighbors kids playing, people having fun and I just cannot do it.

Everything is so different now. I have things going on too that are non-lyme related. I just cannot catch a break.
Posted 6/19/2022 3:14 PM (GMT 0)
Yeah when life gives you "regular" mishaps on top of being chronically ill, it adds up quick. You're right this is a prison most days. I talked to a therapist a few times who specializes in chronic illness. I told her that this illness has taken away a lot of my free will/controll. I use to be able to tell my body to do anything. (id be hung over and say nope drink lots of water cuz you're going for a run today) Now my body calls the shots. She said we need to get you to a place of acceptance without giving up hope. I told her that's the hardest part of this disease is getting your hopes up with every new treatment and then not getting better...its mentally exhausting. Im still not good at accepting this illness but come on this is bull****. I dont think a lot of people would handle this with grace.

Do you have any photos of yourself that you like that have been taken since you got really bad? It pains me to look at prelyme photos of myself but if I look at ones were I still looked good and was happy during lyme it kind of helps my brain. Don't look at photos of your old life right now, it's too difficult.

Also I'm doing heavy bart treatment right now. Anxiety and depression from the break up are adding up. I get it. Let's just hope that we are making progress due to these "herxes"
Posted 6/20/2022 8:27 PM (GMT 0)
Sunflower - I don't have any good technical advice, but as far as emotions, totally understand. The one good thing I can say to provide some hope is I did get better for about two years once and was 90% functional. I've told this before, but I took a job coaching in a DI college track program, traveled, long nights, stressful recruiting, stress of having runners succeed, dealing with team members' problems, etc... and was fine. Heart surgery, not related to Lyme, changed all that.

The point was I did get back to that level after , at least, 5 years of not being able to do much. Wish I had an answer for you. Now, autoimmune has jumped in the picture, so I'm at a lower level than I've been at in many years. I just keep looking for answers and keep up with any news about Lyme, Sjogrens Syndrome or anything else that may be new that could be an answer.

So many on this site can relate to what you are feeling like. It's better than not having a sole and everyone thinking you are just a hypochondriac or crazy when you aren't.
Posted 6/22/2022 4:49 PM (GMT 0)
I sure don't have any 'words of wisdom' to share on this - but I have been right where you are as well. It sucks. It's hard. And those that haven't lived it won't understand just how overwhelming it can all be.

I didn't give up, and I healed from my infections - only to have my infections not be done with me quite yet. It's believed that I have autonomic damage done to my cardio system from having Lyme for over 30 years untreated. I live with blood pressure spikes into the stroke zone regularly and must take rescue meds now. I didn't sign up for Lyme 2.0 or whatever, but here I am. I am determined to live the best life I can, even if I have to struggle through it. For me, it's come down to mindset. I'm just not done here on earth yet.

Oops, not so uplifting, but it IS honest! eyes
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