When I get better...
For the longest time I would often think, "When I'm better, I'm going to... " The thoughts and dreams were endless with that phrase. At some point this last year I stopped saying it to myself. There were no more "when I'm better." My perspective gradually changed to something more along the lines of "This is what I can handle right now." or "We'll see how I'm feeling that day." or "I'll try my best." I can't decide if that's defeat or just being realistic. I'm in the midst of the journey, focusing on the present. I don't know where I'll be when I'm through this treatment, if there is a better or if it's more the same. I didn't expect this treatment to be easy and I was right. I don't think anyone goes into any type of treatment for illness thinking it's going to be without trials. It's going to be incredibly hard. And often times the healing doesn't begin until after the treatment is over. I've been open and vulnerable about my need for support as of late. This is not easy for me, but I don't always have enough fight on my own to carry myself through. I'm just so thankful for those people in my life that understand this and support me. They aren't burdened by me, they love me unconditionally, and I don't have to try to explain myself over and over again. They just know. They know that sometimes I need to hear that I'm a great mom. They know that I needed a quick note to brighten my day. They know I needed a hug. And they know they need to remind me that it's okay to rest. And if you don't know me well enough but want to help, just ask me what I need.
I started my second round of treatment about two months ago now. It has not been enjoyable. This round is treating Babesia (lyme co-infection) which is a blood parasite. Because it's a blood parasite there is more ammonia released with the die off, which is harder on my body. I have not been able to increase my dose much with this one like we had hoped. The good/bad news is that it means it's definitely very prevalent in my body. If it wasn't, my body wouldn't be reacting this way, the supplement would just go through me and not have any effect because there'd be nothing to kill off. I'm constantly very low on energy, most days I get the chills/cold sweats for hours at a time, my appetite fluctuates with occasional nausea, stomach discomfort, feeling disoriented/light-headed, body aches, and neurological effects are some of the issues I've been experiencing. I've talked about this in recent posts, but the depression sometimes hits really hard. It's one thing if it's a day or a few hours of a day, but recently I had a bout that lasted over a week. I thought about wanting to die every day. It sucked. I tried whatever I could think of to get myself to snap out of it. Eventually I eased back out of it. But it's a slippery slope that I don't always have full control of. If I overdo it or get too stressed or don't rest enough my body does not handle it well. I'm just more sensitive and emotional. I'm fully aware that I'm already a very empathetic/sensitive person, but over the years I've learned how to manage it... mostly. This has made it much harder to manage and sometimes I'm just a hot mess. So basically what I'm saying is it's just felt very never-ending. I did do a call with my doctor earlier this week after I sent numerous 'please help me' messages last week. Some physical side effects are one thing, but the suicidal thoughts are a bit more serious and intense. So I felt we should probably address that. He had lots of new products for me to try and swap out and was very hopeful and optimistic with how these have helped other patients. That is all really great and I hope that's true. I'm just sitting here like 'alright, we'll give it a go'. I miss the Ashlee that's like "Let's DO THIS! I GOT THIS!" Time will tell though. It will take a few weeks to see changes, but I hope it's in a positive direction. And then maybe I'll be that annoyingly optimistic person I usually am.
So despite how much of a downer all this is I assure you I've still been trying to make the best of the life I have. I still get out and go do things and tell myself to HAVE FUN! Now, it takes a lot of energy to amp myself up to get out sometimes, but I know it's pertinent that I do so. I only get one life and if this is what it's going to be then I just have to work with it. I still get out of bed everyday and go to work. I see my friends and family. I spend time with Ben and the kids. And most importantly, I laugh every day. Thankfully I still find myself to be funny and laugh at my own jokes. I also live with three comedians and there's never a dull moment. The last two nights when I tucked Violet in at night she told me I'm the cutest. I don't know why, she didn't have an explanation for me, it just is, she says. My kids talk me into doing activities with them even though I'm exhausted. This is good for me, even though that intricate marble run made me want to swear a few times. I love listening to Theodore tell me all the random facts he knows about science and life. Frankly, I just love hearing people talk about whatever their passionate about. The light on their face is priceless. My doctor went into the science of one of the new products and was in full-on geek mode. I did not understand most of what he said, but he was so happy and that made me happy. My husband talks about photography like no other. It fills his cup and brings him to life in a way not many other things can. I’m so glad I get to witness it!
I wish you all a wonderful holiday season! Let's hope the new year brings me good health!
Love <3
Ash
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