posted
I went off abx in Oct. which now I think was a big mistake.
My Lyme is mostly in my head, literally. My vision is permanently damaged and sometimes it hurts to see. My tinnitus has gotten really bad so I get no relief when I close my eyes. White noise and two ambien couldn't even put me to sleep last night. And, its probably obvious, but the depression is bad. Lookimg back, depression was my first symptom.
I can't be a good mom or a good wife. My marriage has really suffered. We have nobody close by. All of our family is 500 miles away. We don't really have any friends here. I haven't felt very social. Who wants to be around someone like me? I never wanted to move here in the first place. If we hadn't left home, I wouldn't have Lyme. I got bit less than a year after moving here.
I just wish I could end it all but I can't because of my kids. I have nobody for love and support. I come online sometimes, but the screen hurts my eyes. My eyes hurt to type this but if I don't get this out, I don't know what I'll do.
I want my life back. I want to go home.
I'm just so tired.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
Sideways...we have all been where you are. It is so hard having to push on when you feel the way you do and a lot of us do not have any support except for the love and care of the people here on this group.
Can you go back on abx? Do you think you need a new LLMD? There are many here that can help you with that.
If you can get in with a good Lyme Literate doctor, you can get your life back. It isn't fast but recovery can happen.
It is also difficult when your spouse may not understand what you go through. My husband has Lyme too, but in the beginning we didn't know that and I had a husband looking at me like I came from from another planet.
I went from active and productive to complaining about pain, no sleep and was so tired all the time I had to stop working.
Please do not give up. We are here to help you wherever we can. Prayers going out to you and your family.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Thnks, Faithful. I just feel like I've lost who I am. I want to feel like me again. I don't know if I ever will.
I emailed my dr but havent heard back from her yet. If memory serves correctly, I think we have, or had, the same dr. Did you used to live in MD?
I'm also seeing an integrative dr. to try and address anything else that might be going on.(she already told me my vit d is very low) She's not an LLMD, but she's very Lyme friendly.
I'm trying really hard not to give up. I know I can't give up. It just gets so hard to fight every. single. day. I don't want my life to end, I just want this nightmare to end.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Praying for you right now.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I am sooo sorry for what you are going through.
Please do not give up. It is okay to have days where you need to let it go and give up - those days are okay and sometimes we need to be in the "I quit" mode. I think it is a normal reaction to an abnormal situation -
You are still you..you are still there inside - it is just hard to feel that sense of self when you are going through something like this. Lyme and any chronic condition challenges us on a very core and fundamental level - the very existence of who we are....
Try to find a way to connect into that part of you that is your core....Find that thing that use to make your heart sing and try to experience again that despite your pain and suffering.
I know that it feels like torture when you wake up feeling as bad as you did when you fell asleep and the nightmare is still here. But I hope that you have faith that you can get back to feeling how you did before you stopped your abx.'s.
I hope you can connect with your LLMD and get back into treatment again...Be Well
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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desertwind - I haven't had anything that made my heart sing in a long, long time. I know I need that again. I'm just having trouble finding what that is.
I used to love to read. I was a real bookworm. If I was reading a book I loved, I would literally walk around the house while reading it. Cook with one hand while holding a book with the other.
Unfortunately with my eyes, I just can't do that anymore. I won't get my vision back like it was. Hopefully I'll get to a point where my eyes don't hurt.
The large chunks of text in books are hard for me to handle. I get annoyed at the large print on my kindle, having to advance the page every two sentences. Hopefully I'll find a way to read again. I did try books on tape; I fell asleep.
Thanks again to all. I'm trying...I'm really trying.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
sideways: Before being diagnosed with Lyme, I went to a neuro-optomotrist for help.
One tip that helps me is to patch one eye at a time to read. That way the eyes aren't fighting each other.
I have read 2 books in the past 3 weeks because of patching.
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Im sorry, daily I wonder if I'd get back to me. I know too well the "pit of despair". We have hormones working against us too. Some days wasn't even one day at a time, it's one minute. I understand and am thinking good thoughts 4 u.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
sideways, I am so sorry for what you are going through. This disease just strips you of so much. I hope that you can enjoy reading again and find some things in life that give you pleasure. That - along with finding a good lyme specialist, is key to getting through this nightmare.
There is a practice in the mid-Atlantic that I would look into if I lived in your area. I will PM you with the information.
Posts: 2386 | From New England | Registered: Aug 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Sideways, I have no answers but so can relate to how you feel in many ways.. I don't have a doctor so feel I am in this all alone. Did see a LLMD once but no longer can afford one, can't say the doc was that helpful..
Oh, how I wish I had some help for you and like you mine is mostly in my head.. vision, ears ringing 24/7, balance etc etc there are days I feel I can't take this anymore as I don't know where to turn..
I will offer you my Prayers..
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Thank you, everyone. I'm feeling a little better today. Woke up with my eye hurting and feeling swollen ( though it wasn't) but doing a little better now. I've been keeping pain meds in me and I just distracted myself for a little while catching up on Downton Abbey online.
I'm not giving up. I'm going to throw everything at this until I find something that works.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
Sorry. My post posted again somehow when I was closing the tab on my tablet.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
sideways; I am glad that you are feeling even a little better.
I can related to the eye issues - I had and sometimes still have chronic flashing lights in my peripheral vision. Some days are non-stop and I feel like I cannot even see straight. That has been going on for 8 years. So I can understand on some level what this must be like for you.
All the stuff from the neck up just never seems to go away.. But great attitude to never giving up..keep searching and searching and searching. As long as you do that at least you have a chance.
Be well and glad you are feeling a bit better. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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