Take Your Feel-Good Illness Movies And Shove Them

Long-term illness is not like you see in the movies. It is not the quiet, pretty, good little girl who it turns out is secretly suffering from a life-threatening illness. It is not a reclusive billionaire who is really hot if he just shaved and who decides not to live because what is the point of living if you are in a wheelchair. It is not a gorgeous, pale woman with subtle makeup lying tragically in a bed, staring out a window and living only so someone can be her savior. It is not the optimistic, sweet yet sometimes sassy little girl who helps you discover the how to live again before she tragically passes away from cancer without showing any outward signs at all ever. It is not the invalid who just needs a little fresh air to suddenly be completely healed. It is not two kids trashing a town because that's how one learns to "live" and they're going to die so they might as well "live" as much as possible.
When I was younger, I used to cry that I was not "pretty" sick. I wasn't a beautifully thin child in a warmly lit room, surrounded by toys and cards and balloons and other gifts. I was constantly yo-yo-ing up and down fifty pounds, as medication side effects played with my body shape. I swelled up to three clothing sizes larger in the afternoon, then woke up back down those three sizes. I was eleven the first time a stranger asked me when I was due. I wasn't tragically weak and sitting outside in a wheelchair, taking in the sunlight that would magically heal me. I was told time and time again by school counselors that I was sick only for attention. I was horribly harassed and traumatized every day by my peers at school, and while that for sure played a part in my mental health and mental health does affect one's body physically, it had absolutely nothing to do with my underlying actual physical issues. I was compared to the Secret Garden boy and the Heidi girl over and over again. Maybe I should try yoga, go out in the sun more, try a sport, etc. And then there was the "why aren't you dead yet?" question that I got time and time again from peers, teachers, strangers, and well-meaning family friends. I began to wonder when my illnesses would finally kill me. Everyone else seemed to think that being sick for a long time inevitably led to death or it wasn't real. And everyone couldn't be wrong, right? When my stomach pain got so bad it led to dizziness, sweating, vomiting, and fainting, I hid how bad it was for two years. Two whole years I let my family believe that I was just doing regular pre-teen girl things like makeup or dancing or whatever in the bathroom when really I was having spasms in whatever dark corner I could find because either I would die tragically soon or I was really making it up and didn't realize it and it would go away soon. Watching movies that portrayed illness just made me feel so incredibly inadequate. Something was super wrong with me that I wasn't like what I saw.
Long-term illness is greasy hair, smelly bodies, dried vomit on toilet seats. It is realizing in the late afternoon that you haven't brushed your teeth all day so many days in a row that your teeth ache. It is doing your hair and being too exhausted to do makeup or get dressed. It is looking around at the house and realizing that while you've done the dishes, every other room in the house remains a disaster and you simply cannot get up to clean them. It is applauding yourself every time you manage to get from the bed to the couch. It is realizing you've already watched every episode of every show you want to see on Netflix and Hulu and resorting to watching things like Divorce Court because at least you haven't seen every episode twelve times.  It is suddenly realizing that you've got an infection starting near one of your surgery scars and being terrified that you'll end up in the hospital with a blood infection and then calling the doctor's office and getting an appointment for a week from now and being terrified that this appointment isn't soon enough. It's managing to feed the dogs, let them out, and that's about it. It's sitting on the couch extremely hungry, but being too exhausted to get up and make yourself something to eat. It's getting dehydrated because your legs decide to not let you walk to the faucet and you've run out of water in the pitcher by your bed. It's keeping a notebook with you with all the important information you need to remember because you can't remember any of it by yourself. It's being dependent on other people for your care. It's being dependent on a dog for your care, sometimes. It's holding a degree from a top liberal arts college and not being able to use it because you can't work for one hour a week, let alone forty without ending up in the hospital for a week. It's having to have so many reminders and systems in place for medications and still forgetting to take the right pills at the right time. It's having your service dog annoy you until you realize, "Oh! It's pill time!" It is people telling you that you are so brave for continuing to live. It is people telling your significant other that they are so brave and good and pure for staying with a horrible medical mess monster like you. It is strangers offering you advice. It is strangers glaring at you for parking in handicapped spaces because you're too young to be ill. It's fighting hard to be heard by doctors. It is crying with relief when you find medical professionals who help you. It is crying in despair because you've woken up in pain yet again just like you have for the last twenty or thirty or forty years. It is seeing spots when you bend down to pick up a towel you've dropped. It is falling down stairs, falling in bathrooms, falling in kitchens, falling at friends' houses, falling in grocery stores, falling in movie theatres, throwing up in every single public bathroom in your surrounding area, passing out at an event that was supposed to be about a friend or family member but now is about you because you've passed out. It is waking up on the floor of the bedroom unaware of how you got there or when or if you've hit your head or broken bones. It is knowing the EMS personnel by name (Oh, hey, Len. How was your kid's dance concert?). It is comparing and contrasting hospitals in the area in casual conversations. It is trying desperately to not bring up your health in regular conversations. It is a constant struggle. It is ugly, it is brutal, it is exhausting, and it is gross. Depending on what you've been diagnosed with, you might be on the highway to death or you might be trapped in a debilitated body for years upon years.
Yes, it makes you stronger, but it's because you have no choice. You have no choice but to fight every single day. You are literally fighting for every breath you take and every tiny task you complete is a reason for rejoicing. I would pay so much money to go see a movie that portrayed long-term chronic illness or terminal illness like that.

Rock Bottom?

(Because I know many of my readers suffer from things similar to what I am writing about today...TW: Trauma, Medical things, Mental health. Read safely, loves.)

There was no post yesterday because my body decided it was done. I had a full physical breakdown. I slept for fourteen hours and when I finally awakened, it was because my angel of a husband physically shook me awake. He knew I was dehydrated and hungry, even though I could feel nothing but the severe pain. He helped me sit up and forced my reluctant body to take pills and drink water and eat food. He helped me to walk to the couch where he could keep an eye on me. I had a few good hours where I was awake and coherent. Then, suddenly, I collapsed again. Apparently, Husband spent an hour warming me up with blankets and heating pads and tea while massaging my convulsing limbs to get my blood flowing properly. I remember hardly any of it. I am so incredibly grateful for him. He is amazing.

I'm going to be brutally honest here. I know I have a lot of young people who I have taught in past years who look up to me and who will read this and be shocked, as they think of me as upbeat and a positive person. And the number of people who know I have mental illnesses is very low. I'm sorry, guys. I'm human. And I'm scared.

I'm terrified. My mental health is severely slipping. I've begun losing hours of my day as a routine thing now. Instances like suddenly realizing I am at the grocery store with my husband and having no memory of the day prior to that is a normal occurrence. The voice inside my head that tells me to die is getting louder and more insistent. The panic I fight is becoming an overwhelming tidal wave that is rendering me incapable of going a single day without hysterics. The medication that I am on is helping me hold on to my mind by the fingernails. I've begun dissociating very noticeably. And just the other day, I realized that the voices I have been hearing are not going to go away. They've been getting louder. There are three of them, and so far they just say my name or "Hey," but my word, it is terrifying. If I had a dime for every time I have broken down sobbing in front of my husband, saying, "what is happening to me?" or, "you're not real. This is a dream," I could pay for mental health reform in America. And the flashbacks? Let's just say that my service dog Riley is definitely earning her treats. I finally called my EFMP (the program the military has for disabled family members) sponsor and told her I need to see a psychiatrist ASAP to get a proper diagnosis and proper treatment. The asshole who "treated" me before (in 2014) literally sat down with me for three minutes, didn't let me talk, and then laughed at me outright when I told him I was having flashbacks. He told me that doesn't happen and young women like myself are usually prone to anxiety. He then called my therapist in (who was in the same building) and, laughing, told him that I was having flashbacks. The two of them openly giggled together. And I still had to go see that therapist, as he was my only hope at not killing myself. When I told him that I could never trust him after seeing him laugh with my "psychiatrist," he was shocked and told me he didn't realize that would offend me. I should probably pray about that, I was told. He himself did not believe me that I actually was ill until he witnessed a flashback. When I came to, I told him I wanted to die. He suddenly realized I wasn't a "hysterical female" and demanded I be on medication and possibly permanently institutionalized if it got worse. From 0-100 in less than 60 seconds. Impressive. He hadn't ever seen anyone actually go through something like my episodes, and was completely at a loss as to what to do for me. He also was not aware that people could go through more than one trauma in their lifetime. Worst. My only experiences with mental health professionals before that was countless (at least 10) psychologists and therapists who were hired by my insurance company to get me to say that the physical illnesses I had were all psychosomatic (i.e. I was doing it to myself because I was an attention whore. One counselor's words, not mine) so they wouldn't have to pay for any of my medications or treatment. Spoilers: I have three debilitating chronic illnesses that are worse than they would be because I wasn't treated properly for 25 years. Here's hoping that this upcoming experience with mental health professionals is better.

I don't know how much longer I will have my mobility. My next doctor appointment, I'm going to be talking with a physician about getting a wheelchair. I haven't danced in months. I haven't been able to drive a car for any distance by myself for two years now. And yesterday, the pain was unlike any I have ever had (with the exception of the pain from surgeries, because holy shit that hurt). My body is telling me that I am doing too much. And I'm upset and terrified, because all I am doing is sitting on couches or sleeping on beds and yes, I'm cleaning and taking care of a small pup but my goodness, that's nothing compared to what some people do and here I am completely unable to even do the smallest of tasks? It's upsetting.

I get these urges to just do stupid things to my body because who the hell cares, right? What is it going to matter if I drink myself to death or smoke until I have cancer? Or eat until I throw up? Or go walking in a bad neighborhood by myself at 3 AM? Or smack my head into a wall until I see blood? The self-harming voices are getting loud. Thankfully, I haven't done anything yet. I have a service dog who recognizes the spiraling thoughts and comes to jar me out of them. And she's teaching little Jeph to do the same. Human hasn't spoken or moved in a bit? Time to lick her. She's already taught Jeph to climb on my lap and lick my tears while she licks my hand. And my husband refuses to let me get away with saying everything is "fine" when he knows damn well it isn't. If I didn't have them, I would have been dead by now.

So here I am, on a Sunday morning, having not showered in days. I'm completely exhausted mentally, physically, and emotionally. My service dog has "grounded" me at least six times while I was writing this. I know I might lose people. I know I might only have three views. But I have to be honest.

Stay safe until tomorrow, friends. And I will try to do the same.

Time Out

Today, I am exhausted. There is pee on every blanket we own except for two that are currently on the bed. These two are totally inadequate for sleeping under, but you do what you have to when you're hopelessly behind on laundry. Thank God for my husband who spent three hours cleaning our house with me tonight. All that is left to do is the mountain of laundry before we have friends over this weekend. Jeph had no accidents on the floor today. But the bed...oh, the poor bed. He had a shower today (he prefers them to baths) and was so upset by how cold the world outside the shower was that he just couldn't keep control of his bladder. So while I was getting a new towel for the shivering pup, he cried and walked slowly around the entire bed, peeing a trail of sadness. I of course did not blame him. Showering is a pretty big deal for the little guy. And he watched his poor sister get subjected to a bath before his shower. Tonight, he learned the command, "Quiet," with copious amounts of treats. After that, he was just so exhausted that as we were cuddling he looked at me with pure guilt and whimpered as drops of pee spurted onto the new bed covers. So now here we are. Late at night with all the blankets and sheets in the laundry with some form of dog pee on them.

Sometimes, Jeph or Riley will get too wild or too demanding or just plain too wolf-like and they get a brief time out. But they are not the only ones. I've noticed that when I take my own time outs, I can handle the stress of puppy parenting a lot better. My husband has been insisting that I take my baths that I am told by doctors are essential to my healing. So every day this week, he has taken Jeph to another room and I have sat in a muscle-relaxing, toxin-sucking bath. Riley is my service dog and she stays with me during baths in case I need her, but she is very quiet when she is working and it is easy to relax and to try to calm my nerves. I also have been relying on Riley's older sister skills. I have been letting Jeph and Riley outside and actually closing the door behind them and only glancing occasionally through the window to make sure they have not tunneled under the fence. Riley is taking pride in taking care of Jeph and teaching him how to play and investigate outside. She also has been using him as her own personal itch-reacher. When she cannot reach a spot, she indicates it and he bites into the spot until she licks his head. It's adorable and weird all at the same time. But I digress. Anyways, when she takes Jeph on an outdoor or indoor adventure, I get a few minutes to breathe and re-focus my mind. These "time out" moments are heavenly, and I hope to continue to find them.

Fibro-Friendly Clothes!

(The opinions expressed in this post are all my own. I am not being paid anything by anybody to express these opinions.)

You guys. You GUYS. I found the most amazing clothing store! It's called Lovesick and it's by the same company that runs Hot Topic and Torrid. But the clothing selection is so much better than Torrid's! And everything is so incredibly soft. I haven't worn jeans without severe nerve and stomach pain ever in my entire life. And now, thanks to Lovesick, I have six pairs of pants to partner with their incredibly soft tops. All their clothing can be mixed and matched. I regret zero of my purchases there. Everything seems to have a bit of spandex in it. I suffer from a lot of swelling issues, and I like clothes that aren't restrictive and don't cut into my skin during swelling episodes. Their smallest size is an 8 (000 in their sizing), so smaller Fibromyalgia friends won't be able to shop there. But fear not! H&M is also a great go-to. While their selection of soft, Fibro-friendly garments is smaller, it was my go-to before medications caused my weight to do some crazy things. You'll need to touch each garment individually at H&M and look at what fabrics are in the garments before trying them on. I can usually tell by touching the garment on the rack whether or not it will be itchy or painful on my body. Cotton/Polyester blends are hit and miss, but Cotton/Polyester/Spandex will usually be alright. Rayon is straight-up itchy unless it's a super-small ratio. Linen and Wool are also things to look out for, as they will seriously piss off angry nerve endings in the skin, particularly on the arms and back. Make sure you cut off the tags, or you'll be all scratched up by the day's end. Fibromyalgia is a symptom of Ehlers-Danlos, as is easily scratched, dented, and ripped skin. If I had a nickel for the number of times I have had garments cause me bleeding sores, I could buy even more soft, stretchy clothes. I'm sick of spending all my time in pajamas, and these two stores are absolutely making a real wardrobe possible.
I hope this is helpful to my fellow Chronic Illness warriors (AKA Spoonies).

Helpful links:
http://www.lovesick.com/
http://www.hm.com/us