Well, it’s been quite a while since I wrote, before the other day it was 4 months to be exact, so I guess I should update you on my health.
4 months ago I was doing REALLY well. I was feeling good, I was in the gym working out several times a week, going out and doing normal people things, just feeling like a normal person. Unfortunately that all came to an end though. I’m back to feeling like I’m dying; I’m sleeping from 4am to 5pm every day, barely eating 1 meal per day, in massive amounts of pain much of the time, barely having the energy to be out of bed for 2 hours per day, experiencing tics/tremors daily, and new symptoms of nausea/a hangover feeling and “ice pick”headaches have appeared out of nowhere. Things are bad around here, really bad.
We have also officially confirmed a new diagnosis, Babesia…lovely.
I think my medications/supplements are multiplying like bunny rabbits when I’m not looking!!
And I don’t even have all of my new protocol yet! (I had to order some meds from Canada)
Thank goodness I’m on a 2 week break from school in between Summer and Fall semesters, the problem is I have only 4 days left of break and I’m terrified of what’s going to happen when school starts and I can’t sleep until 5pm every day anymore. I’m registered for some pretty tough classes and I’m way too sick for that right now.
“Life is what happens while you are busy making other plans” — John Lennon
There is unrest in my soul tonight.
So many people spend their whole lives planning their lives. I used to be one of those people; the one with the 5 year plan, the 10 year plan and the 20 year plan…with plans for achieving my plans, I even planned to plan!
People spend their lives running from one opportunity to the next, expending energy, time and money…they even forgo time with their loved ones in exchange for pursuing the ever out of reach “plan”.
The truth of the matter is I can’t plan anymore. Well, I canbut if I’m being honest with myself it’s a waste.
Don’t get me wrong, I have plans and I want so badly for them to come to life…but I can never ever lose respect for the fact that in a minute it could all be gone. All my plans could go up in smoke.
Tomorrow we could not wake up; we could wake up and not be able to walk; we could wake up and not be able to speak or see or hear. Tomorrow we could get hit by a bus, murdered or kidnapped and sold into sex slavery. Ok, I’m being a little dramatic…but it’s true.
Tomorrow you could get bit by a tick and your whole world could change…mine did.
The fact is that none of us can plan, if we’re being honest with ourselves. We can plan, but we damn well better never lose a healthy respect for the fact that it could all be gone in an instant…because that’s when the universe likes to throw us a little reminder. Trust me…
Plans are just that, plans…they’re ideas, possibilities, desires. They are not promises and they are most definitely not guarantees. So make your plans, set your goals, and work hard for them but remember this…tomorrow it could all be gone.
This treatment, or maybe it’s the disease, is really screwing with my brain lately. Or maybe I’m just crazy…that’s an entirely likely possibility… I’ve been told treatment can do this, but honestly who fucking knows what’s what anymore.
I’m a happy person, a positive person, a calm even in the face of a storm type of person…but apparently not anymore! Now I am a moody, melancholy, down, stressed, sad, everything sucks type of person. I hate that.
I feel like it is slowly chipping away at what makes me, ME. (See, there I go again being all melancholy and negative!)
My moods flip out of nowhere, but it’s not exactly like a bipolar mood swing because those I’m used to. It’s more like I will be ok, content, my usual self…and then out of nowhere, BAM! Sad. Or angry. Or lonely. Or depressed. (You get the picture).
I feel so terribly alone, even though I know I’m not…I have family, and really wonderful friends. I guess talking to, or being around, other people helps keep me me by warding off the melancholy. The problem is, other people have lives…they can’t just babysit me all the time to keep me sane, and I don’t want them to have to. I don’t want to tell people that I am so needy lately because I feel like this. I don’t want to be a burden.
Maybe I just need sleep…but I’m probably just crazy.
I have sat down several times in the last couple of weeks to write this post, and somehow it just never gets written…I guess it’s a weird topic to write about!
As part of my lyme disease treatment I have recently started doing some things to help with detox…namely, coffee enemas. (I know, I know…)
I won’t go in to the details, you all know how google works, and I will put some links at the end of this post if you really want to know. Or you can always email me if you want an actual explanation of the nitty gritty details, or help with how to get started doing them yourself.
What I do want to tell you, however, is my experiences with doing them.
I started doing them because I knew I was killing (or hopefully killing!) lyme buggers, and needed a way to make sure they were getting out of me! (If the dead buggers and the neurotoxins they release don’t get out, they cause awful herx reactions, which are quite unpleasant to deal with, to say the least!) Other, perhaps more popular, methods of detoxing are epsom salt baths, dry saunas, etc. Well where I am staying at the moment I do not have access to those things. So that left me with the enemas, and since detoxing is so so SO important, I figured it was worth a try.
The first few times I started slow (less coffee then is recommended), and didn’t really feel any different afterwards. So I got frustrated and gave up for a couple of weeks. But I have a friend who swears by them, and she insisted that I needed to give it another try, so I did.
After doing one daily for a couple of weeks now, I feel comfortable saying that they DO help. The biggest thing for me is that I can literally be in a lot of pain, have a headache, and just be feeling really crappy, and after an enema I can go to bed without needing a pain killer or headache medication or anything. That is essentially life changing when you deal with the amount of pain I deal with on a daily basis. Now, it is not a miracle cure, this does not mean that I have NO pain…it just means that it lowers the levels from “OMFG kill me now!” to “I can handle it”.
I also have noticed that my “IBS” symptoms have been much much better lately. I am not sure if this is due to my recent diet changes, the guns blazing attack I have been waging on candida, or the enemas…or all of the above. But regardless, I’ll take it! Being able to eat a meal without running for the bathroom is a wonderful thing :].
I am pretty confident that the enemas are part of the reason that I have not had too many issues with herxing over the last 4 weeks. I have had a couple of doosies (yes, I said doosies, don’t mock me), but nothing nearly as extreme as I have heard of other people experiencing, or what I expected to experience. We shall see, however, if this continues to be the case when my doctor switches up my meds in a couple of weeks!
The downside is that the enemas are a huge energy suck. I do mine right before bed, because once I do it I have no choice but to go to bed and lay down. I have absolutely zero energy, often so little that I can barely stand or walk for more than a few seconds. I see this as a plus, however, it means my body is working hard on getting me well and getting rid of toxins and buggers!
So for now, all grossness aside, I guess I’ll keep doing them. I can’t argue with decreased pain, and at this point if it’ll help me feel better, I’ll try it!
I’m sure most of you have heard the saying “I’m sick and tired of being sick and tired”, it’s a favorite among chronically ill people…I don’t generally feel that way though. I’m used to being sick and tired, what I am is sick and tired of is having to HIDE how sick and tired I am. I’m sick and tired of having to struggle through day after day of work, and taking care of everyone and everything, all the while pretending that I don’t need to be in bed taking care of myself (or even better, with someone else to take care of me!). I’m sick and tired of keeping my “everything is totally fine and I don’t feel like dying” face on.
I know it’s probably wrong to say this, but I’m sick and tired of falling in the in-between; between “I don’t feel good, but I can still keep up my normal life” and “I’m too sick to get out of bed”. I wish for once that my body would just pick one end of the spectrum and stay there. This whole “I feel like I’m dying, and often wish I was, but I can still somehow manage to get done most of the things I need to do” is killing me.
*Don’t hate me for saying that!
And please, don’t tell me that it gets better with treatment, I’ve been preaching that message to myself and others for weeks…it’s not what I need to hear right now. Cognitively I KNOW it can get better with treatment, physically/mentally/emotionally I just don’t care today.
I don’t know why, but weekends are my worst days. I don’t know if the stress of the week catches up with me, or the fact that Sunday is my no-antibiotics day so that catches up to me, but weekends suck…especially Sundays. 😦
“I don’t know how to explain it, but my brain isn’t working. It is like I’m doing things, and I think I’m doing them just fine until I go back later (like the grammar in this and my last few posts :[ ). Also it feels weird, my brain. I need to think of better words to describe it.”
I wrote that paragraph a couple of weeks ago as an attempt to start a post, obviously that did not work out too well. What’s weird is that it doesn’t sound like me, especially the last 2 sentences, it’s not how I write things.
The point is, that I feel such a loss of control over my brain lately. I feel like my intellectual abilities are just gone, I feel dumb. I feel like I try so hard to be coherent and logical when I write, and then I go back and read what I’ve written and it is riddled with errors. So very frustrating.
I miss feeling smart, and confident in my mental abilities. It used to be that I never questioned whether I could do something, the only thing that mattered was the amount of effort I put in. I used to dream of going to school, graduate school, a doctorate program, and then of being a scientist and making a difference in the world. But it wasn’t just a dream, it was a plan that I could accomplish with enough effort. Not so much anymore. Now it is just a dream, and what feels like a foolish unattainable one.
The world constitutes strength as possessing physical power, societal power, and financial power. In illness, we learn great insight and wisdom on this subject. We learn what most do not learn until they are elderly. Weakness has nothing to do with muscles, fame, or fortune. It has everything to do with facing unimaginable heartache after heartache, allowing ourselves to break down and be human which renders us as desperately vulnerable, and then having the courage to wake up and face yet another day.
In fact, all of the aforementioned attributes regarding the world’s take on strength possess the power to quickly turn themselves into major weaknesses. Furthermore, they possess the power to turn mankind into animals. As individuals facing struggles unbearable to most, we are endowed with the great gift of gaining perspective on such a crucial matter in life.
We change dramatically the moment the doctor mouths a diagnosis…
So tonight I decided to give you all a glimpse of what a typical Friday night is like for a 24 year old battling Lyme disease. Why? Because a good laugh is always healthy for you, and I don’t mind it being at my expense. 🙂
First, take pills and eat dinner (take out of course, because you are wayyy too tired to cook), but make sure it is free of all gluten, sugar, soy, dairy, GMOs, and anything else you are required to avoid. And don’t forget to chug some of this stuff for the 3rd time today…
Second, brew both coffee and tea. The tea is to feed your kombucha (yes, FEED. Think of the ant farm you had as a kid, only it’s not ants…it’s bacteria).
Next, just go ahead and make that run to Walmart. It’s totally ok that it’s 7:30pm on a Friday night and you’re in your pajamas (it IS Walmart after all).
Just remember while you’re there to buy this…
Instead of this or these…
Then once you get home, grab that coffee you made (it’s cool by now) and head for the bathroom. Yep, you guessed it, it’s not going in the normal way! (For your sakes, no pictures were taken of this portion of the night).
Then, time for more pills!! And if you’re lucky maybe even an injection or two!
Slather yourself from head to toe with these bad boys…
Grab some light reading…
And head for bed!! But maybe check Facebook first…if you’re ok with seeing pictures like this from most of your friends.
All images are real images from my night tonight…except the last which is courtesy of Google. :]
Just because I know my body, doesn’t mean I always like her. Sometimes I feel down right betrayed by her. How dare she have the nerve to look like a perfectly healthy young woman, yet feel like an 87 year old grandma. That’s just not fair.
And then there is the ever present battle inside the chronically ill patient; my mind tells me I want to do something, and that I should, but my body and past experience tells me that I will majorly regret it if I try.
I’ve felt pretty good recently too good. So naturally my brain starts in with “maybe you could try to_____” or “if you just took it really easy…”
But I’ve been down that road before, I’ve taken the chance and reallly regretted it. And then my body decides to drive the message home (just in case I was actually thinking of doing something) with a few days of feeling really crappy and completely out of control of my own body…just to make sure I remember that I am actually not in charge here. :[
So this sequence of thoughts always leaves me feeling down, remembering all of the things I used to be able to do but can’t anymore.
For example, I used to train in martial arts (Tae Kwon Do); I have a 4th degree black belt that took me close to 13 years to earn, as well as an instructorship position, referee certification, and awards from having competed at both the state and national levels. Now I haven’t trained in several years, and can barely make it through the grocery store without wanting to collapse. My two younger sisters, for some strange reason, have decided to take up karate (they’re bored, and crazy lol)…so all of a sudden ALL they talk about is karate this, and karate that. Recently at a family dinner they were going on and on (and ON!) about it, and it got me thinking, “maybe I COULD do that again?” I miss it so much more than I can explain; it is the one thing that I light up when I talk about, and I can talk for hours and hours about it! So I started to get excited; I thought maybe I’ll pull out my uniform, do a little training alone so I can take it as slow as I need to. I can do this!
But nooooo…my body decided I needed knocked down a few pegs. I was getting a little too energetic and optimistic. So it decided to not let me get a decent nights sleep for several weeks now, plus increase my fatigue and pain, and oh let’s throw in some major motor tics too (just in case I started to think I actually had control over my own body!) Not to mention a POTS flare up and some random blood sugar drops, just for good measure.