I’ve been down in a dark hole for weeks now. I just finished four months of Babesia treatment. Four long, rough months. While I haven’t been physically herxing the mental herxing has been nearly unbearable. I’ve been all over the place emotionally. Mostly I am deeply depressed. Barely able to get out of bed. If I do, I usually end up just moving from my bed to one of the couches.Even with a new puppy (well she’s actually 3 years old but she’s still my “puppy” considering at 49 lbs she’s half the size of my old dog) I’ve been unable to pull myself out of my own shit and get my life back together.
I feel stuck with my treatment. When I first started nearly 3 years ago, I was so physically ill I didn’t know how I’d ever survive it. But despite feeling sick, I knew treatment must be working or else I wouldn’t feel so bad. Then I started to get better. I was making noticeable progress. Even with so many set backs I felt like I was getting better. Now I just feel stuck. I’m beginning to wonder it this is as good as its going to get, but I don’t know how I would learn to live with this being my new normal.
After being evaluated by a neurologist (MRIs of the brain and full spine) I received a clean bill of health (at least in that aspect) and was told that ever increasing shaking was a “tic” and that I should see a psychiatrist, which I still haven’t decided if I’m going to do. (A tic from a tick, you have to see the irony in that.) . I’ve had bad experiences with psychiatrists in the past and I’m afraid they’ll take one look at my medication list and tell me that I’m overmedicated or worse want to put me on even more meds. Finding a Lyme literate psychiatrist seems like an even more daunting task. I’m afraid they’ll tell me there’s no such thing as chronic Lyme or my coinfections and that everything is all in my head which will set my Irish temper off.
The shaking is so bad lately. It has moved from mostly in my legs to full body. It is so depressing to even go out in public anymore. I guess if I was older and shook people might write it off as Parkinson’s but since I’m not I get looks of disgust. It almost looks like I’m going through alcohol withdrawal and I often find myself wondering if that’s what people are thinking when they look at me. When I get that thought in my head I try to knock it out as quickly as possible because then I want to burst out into tears. There’s a lot of “talking” to myself reassuring myself that I can’t help it and that its not my fault. I try to joke about the shaking but the truth is that it hurts. My fiancee tries to understand but he just doesn’t get it. I just can’t find it funny anymore. Maybe that’s my depression getting the better of me.
Living with me is becoming increasingly difficult because I am unable to control my emotions anymore. I never know who I’m going to be or how I’m going to feel anymore. I am completely emotionally unstable. I don’t take pleasure in anything I used to and I don’t know how to make it stop. I feel like I have no purpose anymore. My fiancee has taken over the chores I used to do to make life easier for me. I fully appreciate all that he has done for me and continues to do for me.
I have a wedding to plan for which I should be thrilled about and I can barely get myself to do anything about it. I know what I should be doing and I can’t get anything together. I can’t focus. I can’t have conversations I need to have regarding it. I’m trying my best but nothing seems to be coming together and I feel like there’s nothing I can do about it.
I feel like I’m killing time until I see my LLMD again but that’s still two and half weeks away. I’m hoping for good news from them. Reassurance that what I’m going through is normal and that things will get better. But there’s another part of me that’s terrified of hearing “this is it” and its time for maintenance medications for the rest of my life. I think that would crush me at this point and I definitely wouldn’t be able to get out of bed anymore. I am also beginning to wonder if my system has become immune to the antibiotics that I’ve been on. I’ve done so much damage to my body in my quest to get better, I don’t know if I’ll ever recover. Its not like I had a choice though, the Lyme and coinfections were killing me and if I wouldn’t have treated them, my mom would have buried yet another child. What else could I have done?!
Maybe if I had more Lymie friends it would help. Someone who would understand what is going on with me and would have more advice to help. I’m terrible about reaching out to new people. Its still so hard for me to admit that I can’t handle things, even with those closest to me let alone to people I barely know. I go to a Lyme support group and for 2 hours once a month I feel somewhat understood but I also feel ignorant about my own disease and how to handle it. Maybe if I had the money to spend for different treatments but I can barely afford my own doctor and medication to even try to spend more out of pocket that’s not covered by insurance. I pay $330 a month for insurance that I don’t even get to use because my disease is controversial and isn’t covered by insurance. What’s the point?! I’m having to wean myself off my pain medication (which was working and keeping the pain under control) because it now costs me $200 a month.
I’m guessing that all this depression and being trapped inside my own mind is my recovering and/or a side effect from the Babesia treatment. No Mepron this time so I can’t blame it on that. I don’t know what I’m doing or where I’m going or how I’m going to feel tomorrow, let alone in a couple of weeks. I’m just trying to put one foot in front of the other and get through every days that passes.