Getting Funky

I don’t mean funky in a good way, I mean getting funky like the funk, the fog, the deep dark spiral is near. I can feel it coming on. I cling to the few days of normalcy I have just experienced before it comes back to plague me.

I know it is coming because pretty much everything sets me off and my intolerance is very evident to those around me. I hate myself these days while also trying to accept that this is not forever, that I will find answers, that I will function better than I have in the past. I know that this can be true while simultaneously hoping I get hit by a goddamn bus already.

I haven’t been sleeping in a bed. I have been sleeping on my couch for a month, maybe longer, maybe less, I’m not entirely sure because I can’t remember anything. The couch, for some reason, I tolerate better than a bed. Especially a bed in the room full of the humans I made and the one I chose. The bedroom full of breathing and coughing and snoring and teeth grinding and cats scratching and so much restlessness in one room.

We all share a room for many reasons. The biggest is because we only have one bedroom that is finished in our unfinished house. The second is because we have been cosleeping with our kids since our first was born almost eight years ago and it is a weird thing to transition away from so bedsharing has just become part of our life. Another reason is because everyone is terrified of the dark and honestly if we had a separate room there would inevitably be middle of the night wake ups and moving into different beds and snuggling and being present and honestly it is just easier to do from the same room where little movement is required.

But I have been sleeping on the couch to escape that situation and also because I tend to sleep better there. I can fall asleep quickly, I don’t wake up with as many crushing anxious thoughts. But the last few nights it has been dogs scratching and licking and panting and shaking and the moon is so fucking bright it is shining right in my fucking eyes and why the hell do I have to pee again why can’t I just close my eyes and find sleep for fucks sake?

But the couch is comforting in a way that a bed hasn’t been. First of all, I can’t go anywhere. I am confined to those two cushions with the back holding me close, making it impossible for me to flail around. I think that security keeps me in place, able to be more still which potentially leads to more restful sleep.

Don’t get me wrong, I am still not waking up rested. I start every day the same way I ended the day before; exhausted beyond belief. I start every day and end every day in a state of permanent exhaustion. Fatigue is a beast that I have not yet conquered with diet changes or supplements or any other suggestion that has been provided. Yes I am drinking enough water. No I am not doing yoga because it takes days to recover from a three minute walk. Yes I have tried melatonin, thanks.

I have tried to be patient with this journey but advocating for ones self is an entire job in itself. Oh, that’s another suggestion. Maybe I just need to get a job. Because going somewhere every day that isn’t my home where things are actually required of me is clearly the answer to all of my problems. Getting dressed and showering daily and getting kids ready and out of the house (and helping them transition to an entirely unknown atmosphere) and eating breakfast and taking all my medications and supplements and then being a subordinate to someone who doesn’t respect me or care that I am ill or care that I am tired all of the time and who gets sick of me calling in sounds wonderful and very healing. Back to what I was saying.

Healing feels like a full time job, especially when the help isn’t exactly helpful. For instance, I have been on this elimination diet for 70 days now. It was supposed to be 21 days but now it is 70 days because there are lots of layers of my internal hell. I don’t mind that it has been 70 days and I still don’t really feel better but I do mind that I don’t feel better generally speaking. It is kind of the pits. So I was curious, after all of this elimination and gut healing, what do my numbers look like? So I email one of my providers and ask to have some bloodwork done. I want to check the numbers of the Esptein Barr Virus coursing through my body as well as have a full thyroid panel done to see where my antibodies are at. Mostly I want to see if all this that I have been doing has had any affect at all on my immune system.

I didn’t hear back right away and I had an appointment with a new provider who was asking about something as well as a current provider who was asking about something related to the other something so I emailed her back and asked to have two more tests added. She said she already mailed the lab. Because obviously it would have been hugely inconvenient to print another slip and mail that but whatever, it wasn’t a priority so I let it go. I get the lab slip in the mail and it has the tests for the EBV but nothing else. I contact her again and tell her that they thyroid labs were missing from the slip so could she please send one for a full thyroid panel as well as the other two tests I was requesting. Well, I got that in the mail today and she included the two additional tests but didn’t come remotely close to doing a full thyroid panel.

So I emailed her. AGAIN. I haven’t heard back about this time but I am fuming. You deal with sick people every day. People who have given up hope anywhere else and are most likely paying money out of their limited funds to come see you. Paying money out of their pockets for your services. A simple thing, like having a lab slip sent for a round of bloodwork since it has been three months shouldn’t really require all of this attention, should it? No. It shouldn’t. It took time out of my day on multiple occasions and here I am, still talking about it. Because it pisses me the fuck off. I didn’t ask for something elaborate. It was simple. I don’t want to have to do all this extra work on top of the extra work on top of the regular duties of being a stay at home homeschooling mom and a wife and raising a zoo. I wanted something as simple as a lab slip that had the simple things I asked, the things we have been checking for over a year.

I am already heading toward darkness. I am suffocating. I am spiraling into the depths of depression. And this is not something that someone should have to deal with. And it pisses me off. People are sick because they don’t have the resources to get the help that will actually help them. Taking care of health is huge, finding answers is huge, living while being sick while trying to find answers and trying to heal and trying to raise a family is almost impossible.

If you are working in a medical field with people who are doing their best every day to just get out of couch (bed), maybe, just maybe you should not create an extra layer of work for them. Or be so nonchalant. Or not ever apologize. Because life is already hard enough when you are walking through waist deep mud with your eyes blindfolded and ear plugs in your ears and everyone abandoning you.

We really just want someone to count on. Stand in the waist deep mud and yell to one another about how much it sucks. How difficult it is to be alive sometimes and how it is heavy and lonely. Do simple things to help. Read a fucking email thoroughly and do the goddamn job. Send a text and ask how things are going and genuinely care. Offer help, if you can. Make time to spend with your sick friends. We are lonely and feel abandoned and isolated and depressed because it is a long journey and we know how difficult it is to be around us because it is all we can talk about but please make time for us.

Something happened today. I got a package in the mail that I wasn’t expecting. The other day I had posted in my Instagram stories how much I have been fighting with my Cricut because my mats are all very much not sticky anymore so none of the paper I use holds in place. It is very annoying. I had started taping the sheets down with washi tape. A friend that I have not met in real life sent me three new mats after seeing my story. She took the time out of her day to do something for me that she knew would be appreciated. I don’t think she knew I would cry but her kindness brought tears to my eyes immediately.

I’m not saying you should buy all your friends gifts, but just pay attention. If you don’t know how to help, ask. If you don’t want to help or are emotionally unavailable to help or are an empath and said friend drains the life out of you, be honest. It is better than being distant.

I may be heading to a dark place but I feel hopeful that these moments aren’t forever. Things are getting funky but they don’t need to stay that way. I’m clinging to the days that are getting longer with the anticipation that my support system will be available soon and these days of solitude will be coming to an end.

Published by Tristan Manzolini

Hey! I'm Tristan, lover of beautiful things, mother to three, chronic illness warrior, and the person behind this blog. I have been on a journey toward wellness for a bit now while homeschooling the kids and cooking (and eating) a lot of food. I wear my heart on my sleeve. I have come to the realization that I don't do well with middles. I like to ramble and talk about one thing that leads to something entirely different and I love run on sentences. Oh, and I really love things that I can't have at the moment (coffee, ice cream, chocolate, butter, fresh baked bread, I miss you and I'm sorry I didn't appreciate you as much as I should have love you bye).

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