As you all know from my blogging, emailing and Facebooking, I've certainly had some very dark days during treatment. Many of them. I want very much to write about the grief I've been feeling over many things, but it hasn't 'clicked' for me yet when I've sat down to write.
One of the issues I've been dealing with is sadness, grief, and depression and anxiety. There, I said it. It's so much more difficult for me to talk about these topics than to talk about the physical symptoms. Why am I embarrassed? I would never judge another friend who is struggling with depression and anxiety. It's nonsensical!
Since stopping the malarone I've gradually felt more and more like 'myself', thankfully. I'm not sure what will happen as I continue to increase the other medications, but I'm grateful right now to report having seen a little light IN the tunnel!
Because Lyme has, at this point, penetrated my nervous system, it is not unreasonable to assume that I may have some neuropsych symptoms as a result. Lyme in the central nervous system (CNS) causes so many issues including cognitive problems, sleep disruptions, headaches, and depression and anxiety.
When taking the antibiotics to treat the Lyme, it is likely that many of these symptoms may get worse from the die-off (Herxing).
This has made figuring out how to deal with the depression and anxiety and understanding its source very difficult for me. Talk about muddied waters!
I still have no idea whether the malarone itself was making me sick (it can have some nasty side effects) or if I was herxing on it.
The questions I ask myself are: Am I actually depressed or am I sad and grieving? Am I depressed and anxious because of the Lyme disease itself? Am I depressed and anxious because we are penetrating the CNS with the antibiotics and it is part of my Herxheimer reaction? Am I depressed and anxious because this whole thing just kinda sucks? Am I depressed because I'm grieving so many things in life I had hoped for and cannot have? When does what I'm experiencing become depression over sadness? Or is it some combination of all of these?
Is it congruent, given what is going on, for me to be depressed? Yes.
Does it matter what's causing the increased depression and anxiety? I'm not sure.
It's such a difficult balance to figure out because I have had very little luck with increasing my current anti-depressant in the past, and have not had any luck with other ones. If I want to find medication to better control anxiety and depression, then I have to back off of the Lyme treatment for several weeks which I don't feel comfortable doing.
I've been trying to find ways within the treatment to nourish myself. The hardest part is knowing what I need to nourish myself and not having the energy to do it. Right now treatment has been more tolerable so I have been able to find some ways to do so: blogging, meditating, fun TV, and baby steps in the yoga department. I receive body work twice a week with two women who also help me to process what is going on. Maxine is my most trusted spiritual advisor. Each visit with her is an incredible blessing!
I'd like to add in counseling, but this gets sticky because it's difficult for me to leave the house and because it's difficult to find anyone to take my insurance. I'm thankful that right now, I've got a really great team of family, friends, and the help of Maxine as a spiritual advisor.
And, do I really want one more appointment to go to? Part of what gets me depressed is how my entire life does revolve around illness right now. It is all-consuming.
Physically, I do feel like I've made some progress in some areas. Sometimes I sleep straight through the night...EIGHT hours! Honestly, I can't remember the last time I was able to do that on a semi-regular basis. I've had less problems with my Diabetes Insipidus-type symptoms. And sometimes my pain is better. It still changes and gets aggravated by med changes or other such things, but it's something. The improvements in sleep, when they happen, work wonders for my mood!
I'm not sure what made my spirits lift this week, but they did. And it felt like some light in a very long, long tunnel. I had a couple of days when I could actually say I felt HAPPY, even in the midst of not feeling well.
One of my favorite blogs, Touched By Lyme, discussed the challenge of always searching for light at the end of the tunnel. The post was written in relationship to teenagers with Lyme, but the message still resonated with me, making me think more about how to find light now.
The author writes: "...to a teenager mired in the muck of an all-encompassing chronic illness, the promise of a better life at some distant point in the future can seem impossibly remote. Meanwhile, as their teen days, months, and even years slip away, the concept of a light at the end of the tunnel offers little hope or comfort."
This is why Kathleen Steele, who counsels teens with Lyme, focuses on finding Light IN the tunnel.
Physically, I do feel like I've made some progress in some areas. Sometimes I sleep straight through the night...EIGHT hours! Honestly, I can't remember the last time I was able to do that on a semi-regular basis. I've had less problems with my Diabetes Insipidus-type symptoms. And sometimes my pain is better. It still changes and gets aggravated by med changes or other such things, but it's something. The improvements in sleep, when they happen, work wonders for my mood!
I'm not sure what made my spirits lift this week, but they did. And it felt like some light in a very long, long tunnel. I had a couple of days when I could actually say I felt HAPPY, even in the midst of not feeling well.
One of my favorite blogs, Touched By Lyme, discussed the challenge of always searching for light at the end of the tunnel. The post was written in relationship to teenagers with Lyme, but the message still resonated with me, making me think more about how to find light now.
The author writes: "...to a teenager mired in the muck of an all-encompassing chronic illness, the promise of a better life at some distant point in the future can seem impossibly remote. Meanwhile, as their teen days, months, and even years slip away, the concept of a light at the end of the tunnel offers little hope or comfort."
This is why Kathleen Steele, who counsels teens with Lyme, focuses on finding Light IN the tunnel.
Thankfully, I saw that light during week 23.
When it comes to being nourished through this journey, I cannot thank YOU all enough for continuing to find such thoughtful and loving ways to nourish me. You bless me tremendously.
Blessings,
Emily
1 comment:
Yay for light IN the tunnel!
Thank you for sharing about the sadness, grief, depression and anxiety. Thank you for keeping it real.
I can only imagine how difficult this treatment must be for you. I hope and pray that you will continue to see progress, and I pray that you will be able to find ways to nourish your soul even in the midst of treatment.
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