Real Talk: What it Feels Like to Have Chronic Fatigue, Part II
So, I've been taking all of the recommended supplements, and more, for all of my tests for 6-8 weeks now. They cost around $500/month. Progress is going nowhere slow. My doctor thinks that given my non-responsiveness to these and past treatments I will eventually need to be referred to a specialist who deals with mold/biotoxins, Lyme, chronic viral infections, and that sort of thing, but that I should keep on trying to get my major systems (adrenals, gut, and detox) in line first. I'm supposed to keep on keeping on 'til August and do some retests to see if anything has shifted, but not expect any changes in symptoms. This is really shitty. To just have to keep on day after day, month after month, year after year with bone-crushingly deep, dysfunctional depression, fatigue, and pain.
"That sucks." My roommate said.
"It really sucks that you have to be ill." My doctor said.
"...The point is though that it sucks. It just sucks. Anyway, I feel bad for you 'cuz I know you have tried literally everything. It sucks," my friend Eric said.
Yes, it sucks. It is the suckiest suck that ever was sucked.
Now, some may say I'm just impatient, but despite everything I've been through I have some tenacious belief in good. I'm going to do see that stuff through, but I will never be convinced that it isn't possible to get results faster, not just with spiritual miracles, but with more aggressive or unusual medical treatment: IV chelation therapy, ozone, NAD drips, rife machine, PEMF, infrared sauna, frequent colonics, fecal transplant, etc. It's just a matter of finding and being able to afford the right doctor or the right clinic with the right set of treatments, and doing them often enough. I think.
I've wanted to go to rehab half of my life. To have no burden placed on me other than healing. I've looked into some of these treatments and clinics, but even with enough money (not that I have that), and even with all the tests showing what is wrong with me, it is still a humongous challenge to choose the right thing to do, a big risk. You could easily drop 10k, or more, and end up feeling the same or worse than ever. Well I could anyway. I tend to be unusual.
So how does one cope? From time to time, it seems right to write a post that is dark but real, like What It Feels Like to Have Chronic Fatigue, Part 1. These posts aren't really for the well people. They are for the other sick people who are just relieved that someone else is thinking and feeling the same horrible things. When presented with a difficult situation such as the one above your thoughts tend to be dark, but they were already dark given that part of your illness is constant, intractable depression. I guess they tend to be even more dark. Here are some things that having a prolonged chronic illness makes you do:
How To Win at Chronic Fatigue
1. Fantasize About Having Cancer
I think about death a lot. I think about how if you are in the hospital and probably going to die from cancer or some horrible disease or accident people kinda freak out. They don't want you to die. They might start a fund to collect money for you, bring you cards, tell you what a great person you are, give you their kidneys. I'm kinda jealous of illness like that. I have fibrocystic lumps in my breasts so I mainly fantasize about developing breast cancer.
It seems weird that if you have a slow illness that is not going to kill you but just make you miserable for the entire rest of your life people are okay with that. Just don't die on them. It feels a bit selfish for people to react this way. I mean I think if I had cancer I'd probably still insist on alternative treatment and quite possibly no one would support me in my stay at some holistic cancer clinic which would do very similar treatments to the kind I want for my current disease. But it's not just the attention and validation and possible funding that I'm jealous of, I fantasize about getting cancer, so I can die without it being entirely my fault. It's an out without letting everyone down and making them feel guilty and traumatized.
I think there is a big difference between thinking about suicide and being close to committing suicide. I'm not close to committing suicide for at least two reasons. One is that I'm stubborn and there are always more things to try. Two is that I see healing/becoming whole as part of some long-term game I'm playing. I'm afraid I'd only be reborn with the same challenges to work on and I don't want to waste any time being a fucking helpless baby again. No way.
2. Slowly Give up On All Your Hopes and Dreams
I feel like in the last couple of months, perhaps due to increasing fatigue and decreasing anxiety, due to shifting my diet from low carb back to moderate carb (not running on adrenaline to keep my blood sugar up), I've come to a certain peace that I wasn't experiencing last year. I've simply accepted that certain things that I was always talking about and thinking about are just never going to get done. Where there was tension and frustration before, now there is only bleak, tired hopelessness. It's refreshing really.
- I've come to accept that my house will never be fully clean, and I've mostly stopped trying to clean it. I clean the kitchen a bit when I need more space and dishes. I sweep the floor when I start dragging so many grimy dust bunnies into my bed on the bottom of my feet that it feels icky. And that is about it. It's a nice natural dirty homeostasis.
- I've come to accept that I may never finish my various book projects. That I am, in fact, highly unlikely to finish them in the state of health that I am in. It hurts my back to write. It's even hard to read for research. I start to fall asleep right away when I begin reading. I haven't finished anything in the past. So something would have to change for me to finish. Why would I suddenly do it? Where would this new discipline and energy come from? It is more realistic to predict that I won't finish. I don't even want to have a published book. That just sounds exhausting. It opens up another whole can of worms with sales and marketing and interviews, and fans. I don't want to deal with those things. I may pick up a book project again at some point, but the days of trying to get something done by a certain date are over.
- I've given up on the idea of healthy relationships. A few years ago I let go of the idea of definitely wanting to get married and have children, not just for sickness reasons, but just in general it seemed like perhaps I might do well as a free-floating bachelorette. But more recently I've given up on even having a boyfriend. I'm just too tired and "busy" to meet new people. Kind and decent-looking men write me very flattering, in-depth messages all the time on OkCupid, and not a one of them has really inspired me enough to meet them, not for like at least 8 months. Is it them? Yeah, probably. But it's also me. I'm not sure I would want my dream guy if he were to contact me tomorrow. I feel exhausted, distracted, and oppressed by the small number of tasks I have to do, like continue on with the joke that is getting my PhD, which is really front to funnel government money into bottles of supplements and organic, grass-fed meats. My chronic fatigue has become too bloated and massive. I don't think there is any room in my bed for anyone else. Weirdly, I have a high sex drive despite my fatigue. It is annoying.
- I've given up on the idea of blogging or vlogging with any regularity. I accept that I'll just do it when I feel like it. In fact, I've given up on anything businesslike that could make me money. As with the book writing thing, every time I've tried to push myself in a certain entrepreneurial direction, or to sell off some belongings I don't use, or get a job, I've wasted a lot of energy thinking about it and haven't followed through very far. Time to drop those balls as well and just accept that I will always take the easy way out (another loan, another credit card) if there is one, and accept the debt that keeps racking up.
- I've given up, at least partially, on physical fitness. I still walk/hike, but I try to keep it between 20 minutes and 2 hours now. No more half day, or all day adventures. Even three years ago I was still pulling off 5, 10, even 14 mile hikes. Not anymore. Now I often feel a crushing pointlessness when hiking. I'm not getting fat, but my poor dog is. I also don't do yoga or jog anymore. I just feel the physical drain that these things impose on me more than I used to and it isn't worth it.
There are a lot more things I've given up on over the years. These are just the most recent ones.
3. Go into Massive Debt and Don't Give a Fuck
I think if I ever finish my PhD I will have a million dollars in debt, literally. But who cares? I'm quasi-suicidal. Do you think that I care about how much debt I have? No. I only care about feeling good. Money is not irrelevant. Money is everything. Money buys comfort. Money buys healthy food. Money buys tests, doctors, and treatments. Money buys help when you need it because you have no friends because you are too depressed and tired to have friends. But debt is almost irrelevant. Worst case scenario I end up living in a cave in the woods with my doctorate framed on the wall. I've done it before and I'd do it again. When you are this ill you live hour to hour, day to day. Hypothetical problems you may encounter in the future are not that relevant.
4. Just Keep Going
Here is a picture of me on a donkey in Mexico. Because why? Because, I don't know. You just keep going: