A Terrible, Horrible, No Good, Very Bad…Night

Yeah, that pretty much sums up the night I’m having.

You know how you know it’s a bad night? When you’re laying, half on the bed and half off it, just staring at the floor, because you attempted to sit up and couldn’t do it. When you’re brushing your teeth sitting on the toilet lid, supporting your arm on the counter just so you can hold the toothbrush. When you can’t even swallow enough to get your pills down. When the thought of making it across the room, where there are no walls or furniture to hold on to, is absolutely terrifying. 

My body is full of concrete, can’t move it, won’t move it. Even now, typing this, only my fingers can move. Yet my entire body is twitching in random jerking movements, somehow it can move itself, just can’t move it…apparently.

This twitching really freaks me out, I have to say. It drives me crazy; it hurts and it’s exhausting, and it scares me because I don’t know what is causing it. I have a referral to a neurologist, but I haven’t called yet…I’m terrified to go, and have them tell me “oh nothing is wrong with you”, AGAIN. After running a bunch of annoying, usually sucky and painful, tests…of course. 

And the pain…oh the pain. That is all I will say about that….

Add to all of that the fact that it is almost midnight and I am not in the least bit sleepy…perhaps due to all of the miserable-ness. Regardless, even after taking Benadryl, here I lie, wide awake. At least if I could fall asleep things would (probably) be better when I woke up…

Am I whining? Yep. Deal with it. Tonight I don’t care, I’m allowed.

8 Comments

Filed under Chronic Illness, Uncategorized

8 responses to “A Terrible, Horrible, No Good, Very Bad…Night

  1. Hi, I recently found your blog. I suffer with multiple autoimmune diseases, not all of which are completely diagnosed yet (i.e they know it’s autoimmune, but they have no idea what it specifically is). I’m currently a bit of a medical mystery. I just wanted to say that I get what you are going through. I understand the fear of attending yet another medical appointment, only for nothing to be diagnosed, despite suffering with so many strange symptoms. I’m sorry you feel like this. I hope the neurologist can give you some answers.

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  2. I suffer from fibromyalgia and a long list of other invisible chronic illnesses and pain, most likely an autoimmune disease, they just can’t figure out which one it is that’s attacking all my organs. I understand your post and I’m sorry you’re suffering like this and I sure hope you can find some relief soon. I’ve been to a million and one doctors and I’m quite sick of it. For now, I’m on a break from trying to find that one doctor that is going to figure it all out, one day. Hang in there. Just wanted to let you know that you are not alone. I wish you the best on this difficult journey. I’m always here if you ever need to talk, vent, or whatever.
    Peace,
    Tammy:)

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    • Thanks Tammy. I’m so sorry that you are going through this too. I have been sick for so long, and have seen so many doctors, that sometimes it literally feels like I cannot deal with one single more doctor. Ever. I hope you find some answers soon! Attacking organs is scary stuff! Luckily I don’t have TOO many organ issues, other than ovaries and heart :/. Good luck! And I’m always here if you want to chat as well! :]

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      • Another thing I hate about having all these diseases is I have all these different doctors. I’ll be having symptoms of whatever and I’ll pick which doctor I think I should call, I call that one and they say to call my primary care doctor and that doctor will say call your GI doctor and my GI doctor will tell me to call my OB/GYN and so on. I just get ran around in a big circle usually. That is very frustrating. Have you ever had that problem? And, then if one of them does decide to have me come in, they never know what to do for me. It’s always the same, well it’s just your gastroparesis or whatever and there’s just nothing we can do, Tammy. Just keep taking the medication you’re on. Seriously? That’s why lately, I usually just will wait and bring everything up when I see my primary care doctor, which I see on a regular basis for meds and lab work. I just keep getting told, it’s most likely an autoimmune disease, but we cannot figure out which one. Really? Hmmm……well, maybe you could do some more extensive testing, duh! I’ve even been to the Mayo Clinic in Rochester, Minnesota. Big fat waste of time and money. All they did was repeat all the tests I already had done here. I figured they would do the more extensive testing and get to the bottom of this autoimmune disease. NOPE! I walked away from there with the diagnosis of fibromyalgia, which I already had before I went there. I was just in shock. We drove 8 hours one way to get there and I was there for 4 or 5 days and we had to stay in a hotel and then I had several appointments each day with different specialists and that’s all they did. Do not ever waste your time going there. All I ever heard was if anyone can figure things out it’s the Mayo Clinic. B.S.
        You say you don’t have too many organ issues other than your ovaries and heart. I had all kinds of ovary, uterus, female issues that I ended up with a complete hysterectomy after 3 surgeries. They were trying to save me an ovary so I wouldn’t go into menopause because I have Factror V Leiden, a blood clotting disorder which puts me at a 5-10 times higher risk of getting blood clots than someone that doesn’t have this genetic disorder. They said I wouldn’t be able to have any hormones if I had hotflashes and any other symptoms after the hysterectomy, but that one last little ovary just kept getting cysts on it and they had to keep removing them and finally my doctor said we can’t be operating on you every month to remove these cysts so we need to just go ahead and take it and they did.
        Now, having issues with your heart must be scary. I have a very abdnormal EKG, but they tell me not to worry about it, but I have to keep seeing a cardiologist and having echocardiograms done like every 2 years to check on some mass on my heart. LOL yeah, don’t worry about it. Sigh……………….I’ll shut up now. You’ve probably heard about enough out of me for today. LOL but, I do look forward to chatting again soon.
        Peace,
        Tammy:)

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      • I have that problem all the time! That is why I have gotten used to just going to my primary care dr for everything, and I pretty much do what you do and just see her about every 6 weeks and cover everything then.

        I had a similar experience with Shands medical center in Gainsville, I waited months to get in, drove for hours, waited for HOURS, and got nothing but a chance to be a guinea pig in their research study. I’m pretty much done with with those “research” hospital type places.

        I have issues with ovarian cysts too; I have one at the moment that is quite painful. The OB/GYN said that it is “leaking”, meaning it is letting it’s fluid out slowly every once in a while, and when it does it is horribly painful.

        I am waiting for results of genetic testing, I have a family history of MTHFR mutations which can also cause serious blood clotting issues. I have read about the Factor V Leiden in the reading I have been doing about MTHFR.

        My heart issues are mostly annoying, it makes me feel awful frequently. But for the moment it is not dangerous. It does scare me a little that it could, and might, worsen to the point of needing valve replacement surgery. :/ But that is a ways off…

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  3. You have every right to sound off when it gets that rough. i hope you are feeling a bit better today. i was going to say you have my sympathy but sympathy is pity and i won’t pity you.. instead you have my empathy because i understand what you are going through and how difficult it can be to just get through those tough times.

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    • Thank you! I agree, I don’t like hearing that word sympathy…empathy is MUCH better! I am feeling some better today, but now there are other issues going on and the pain is still always there…you know, if it’s not one thing it’s another!

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