I thought this short video on YT was an incredible reminder, especially when the holiday season is often hard on people and this has been an especially difficult year for a lot of people. So I wanted to share Fire Department Chronicles’ video. Please consider taking a few minutes out of your day for it and even share it if you can. Maybe we can help a few people this year if we raise awareness and compassion. Thank you! (Not sponsored or anything – just something that I think is really important to share.)
Tag Archives: awareness
May 12th Fibromyalgia and CFS Awareness Day
The Invisible Illness Awareness Day came this year while I’m having quite a struggle. If you feel inclined, please help spread awareness that there are invisible diseases that are barely understood and often disabling. The number one cause of death with most invisible diseases is suicide, because we seldom feel believed or understood, and we can become very broken when we lose the life that we knew.
In honor of spreading awareness, I’m going to be super vulnerable today and admit a few things. I am trying to accept that this is my new normal; although antibiotics got rid of the sinus infection, H1N1 combined with my Fibro to do a real number on my body. My level of illness has progressed again. In officially acknowledging this, I realize that I will have to make a decision on how to close out Georgia’s Pampering as a business. I’d like to keep the blog and hopefully still be able to provide useful information, but I’m no longer going to offer products that it is no longer healthy for me to try to make.
I’m also going to give in and get the forms done for my disability placard, so when I can manage to get out, I can do more by not being worn out from walking through a parking lot before I get there. I’m also going to use my standard wheelchair for when I leave the house, if it’s not a small outing that my cane can handle. I am now having too many falls and too much weakness to risk relying on my cane and hope. It’s silly, but those are two incredibly difficult decisions. Thankfully I all ready have a wheelchair from when I injured both ankles and feet, but unfortunately I can’t self propel myself for long without the fibro acting up in my arms, so we are looking into a motorized one. Unfortunately, because it’s for outdoor use and we do not have an accommodating house, the cost is out of pocket, so we are pursuing a few options of inquiry. Because we’ve made so many adjustments over the years to accommodate my indoor needs, if I want to have a little independence or enjoy time away from home, due to having a different kind of disabling illness, I don’t qualify for help. I guess I found another medical donut hole to fit into.
So, big changes are in my future as I stop being stupid and stubborn, and make some needed changes to accommodate the worsening of my symptoms. Maybe by being so brutally honest about what I’m giving up and dealing with at just 40, that’ll help someone else believe in these invisible illnesses, believe us when we say we’re sick, and maybe help someone understand a chronically ill friend just a bit better. I dream of a day when Awareness is just as vital as the MeToo campaign. Since it’s easier for a picture or pic with small message to get passed along, I’m going to share some down below. Please, please, please, feel free to share any and all, and help us raise Awareness for Invisible Diseases like Fibromyalgia/CFS.
Self help books and psychologists start a therapy course by changing how you think about your illness. It’s a challenge to make you stronger, adapt, and find other things in life that you are good at. Sure, that’s true, but stop telling us that we aren’t losing our lives. Acknowledge this and help teach us how to cope or heal from these losses! We are losing careers, relationships and friendships, hobbies, and basic abilities sometimes. Some of us lose the ability to feel safe outside of our home, because our immune systems are so bad that being around other people becomes literally risky. We lose the ability to enjoy date nights, feel good about ourselves, and sometimes we are paradoxically terrified of people seeing us at our worst…when we have extra cushions because just sitting hurts, we have braces or bandage wraps around joints, we smell like Bengay, we’re slowly dragging behind a walker, and sometimes we have to choose to use our energy on changing out of pajamas or spending a little while hanging out on the couch with our spouse. I’ve learned a lot of things during my journey and I lost a lot, too. So, no matter what therapy says, I’ll try to raise Awareness every May 12th that I make it to, and I’ll be honest that Fibromyalgia/CFS/Invisible Diseases all hurt from being so misunderstood.
Thank you for helping me spread Awareness and for being here during my journey. If you feel comfortable, please feel safe to share your journey in the comments. I’ll block any trolling. If you’re a Spoonie, you don’t have to keep your “I’m okay” mask on with me.
I hope this helps someone out there
At the start of the week I had a very frightening incident. L had to go to work and after seeing him off, I grabbed a bite of food to nibble on to keep my meds from making my stomach upset. I could still see the reflection of the headlights through the driveway facing window as he waited at the end of the drive to pull out. That’s when things went wrong. I’m not sure if the food just turned wrong as I swallowed or if my throat pulled one of its lovely episodes of making it difficult to swallow, but I ended up choking. Thankfully, as I prepared to try to use a chair to do the Heimlich the food mushed enough and my throat relaxed enough, so I was able to swallow. It left my throat so raw and sore that today was the first day I spoke fully, although I was careful to not speak a lot. I even got to eat real food again! *happy dance* I still have the side effects of it inflaming other parts of my sinuses and my ear canals, but Hallelujah!
Anyway, while quiet, L gone or asleep most of the time, and my trying to distract myself, I went down the medical rabbit hole. I started out with learning how my throat could cause my ears to have a crinkling noise and all my other symptoms, then about six subjects in I ended up with a YouTube recommendation to watch Spaulding Decon, under the Crime Scene Cleaning website. (Hey, I admitted I went down that rabbit hole. Never know where I’ll end up with my curious mind! Lol) One of this year’s videos, where they started to record and air lengthier and informative episodes about biohazard cases that they handle, came up and I ended up watching them all, and I suddenly had a whole new POV that helps me with my suicidal ideation. They clean up from regular unattended deaths, hoarding, accidents, etc., but also suicides. There is no judgement over the person’s choice or what the client has chosen for the level of cleanup once the biohazards have been dealt with, either. The thing is, it’s unflinchingly up front and shows everything after the body has been removed. You see what the family member that discovers the body would face and how the family isn’t just coping with their grief and possibly shock, but also the physical scene that is left behind.
Police and emergency personnel don’t clean up the scene when they remove a body. They’re there for the emergency (or removal) situation and possibly an investigation. They don’t clean the blood splatter from a gunshot wound or remove decomp. There are specialized companies that do this; not only for safety, but to help the people and families in need of their cleaning services. They’re heroes who don’t wear capes, just like law enforcement and emergency personnel.
Seeing the gore that a grieving family member or friend, most likely L or my mother, would see and deal with if I committed suicide, really helped me create a step back, so to speak, for my mind to walk through if my thoughts turn dark. I basically do a mental crime scene walkthrough, to see it as they would, and see how the different choices would affect them. Somehow having the intense, graphic visuals in my mind are a great way to make my mind shift focus a bit and end up completely stopping. (Ask people with ideation – it’s super hard to quiet those thoughts and take a step back from the thoughts, no matter how much you don’t want to have them or feel that way. I certainly don’t want the sudden feelings of desolation and worthlessness!)
If you suffer from ideation or know someone that does, please consider this unconventional method or talk to your mental health professionals if you are the sufferer. As my awesome psychiatrist says, you can’t have too many tools in your belt when it comes to mental health. The visuals and the meaning behind them are honestly very haunting. They’re a hell of a lot stronger right now for me than when the dark thoughts creep in. So, I hope (yet another brutally honest and odd post) will help either open dialogue if you know someone who is struggling or if you suffer and want to try another method to see if this is the one that works better for you than the ones that have barely worked for you before.
If you know someone who has troubles with ideation, please consider trying to stomach a bit of the show enough to watch “Crime scene cleanup job questions answered”. The owner has some incredible statements about judgement that are worth a listen and to take at least a few minutes to consider. It might just give you another way to look at situations.
I truly hope that any sufferer receives the same empathy and lack of judgement that this company gives, and I hope that you are able to find that one tool that works really well for you, even if it takes going down a weird YT rabbit hole to find yours.
National Invisible Illnesses Day
Today I want to share a few pieces to help raise awareness; an encouraging one, one humorous, one to hopefully help others understand the “what”, and last is a link to an incredibly well-written and brave blog post about going from being a very active person to disabled by invisible diseases, with an insight into how “kind and helpful” comments can be very hurtful for those with invisible illnesses that can not be cured at this time. Some lucky people get to go into remission or were misdiagnosed; for most of us this is the new life we are forced to accept.
Some days this is exactly how it seems. *laugh*
And last, but not least, Jamison Writes’s blog post: “This is Why Exercise Can’t Cure Illness“.
Thank you for taking the time to read this and learn a little bit, if you’re unfamiliar with these illnesses; with a big Spoonie non-touching hug of encouragement to those who had to mourn their original lives and take it day by day. I wish I could give an extra two spoons to all Spoonies, so that we can shower and not have to rest afterward today!
National Fibromyalgia Awareness Day
Today, May 12th, has been selected for National Fibromyalgia Awareness Day. There are several disabilities that don’t have any visible signs and a lot of sufferers tend to hide from others when the symptoms are really bad. In light of this, please take a moment to learn a little about any of the “Invisible Diseases” or take a moment to just show a sufferer that you’re there for them. Just a note to say you’re thinking of them, offer to do something that would help them (believe me the smallest thing to you can be incredibly hard for disabled people sometimes, so you don’t have to bend over backward to make their day), or even just tell them that you’re there for them if they would like to talk about what they’re going through. Illnesses can be very alienating, so every little effort means the world.
If you’d like to learn more, I’m including a few trusted links. First is the Fibromyalgia Network, which has a lot less medical jargon, so it’s an easier starting point to learn the basics about Fibro. Second is a really awesome letter to “normals” from a Fibro sufferer’s point of view, which may give you a better insight into what we may be going through and how you can help, which is also on a post at the FM Network, here. Third in line is a post explaining how Invisible Diseases can be a disability and be disabling, which is over at Invisible Disabilities. Just having someone that understands the struggles a sufferer is facing can literally stop suicide ideation even, so the few minutes you spend reading is an awesome gift.
I saved the one that I think says it best for last and wanted to put it all by itself. It explains the “Spoon Theory”, which applies to any chronic illness, and is one of the best ways to depict and explain the daily struggle of living with a chronic illness. It is absolutely amazing and eye opening. Even if you don’t do anything else, please read this brief post. I think it is a phenomenal way to raise awareness. You can read it here.
Thank you for reading this and participating in today’s event in whatever way you do. It means so much to all of us when someone tries to understand or tries to help. It means more than I could ever express that you all show support and encouragement during my journey, and I thank you wholeheartedly.
A Candid Discussion
As you’ve probably figured I’ve been incredibly sick and then recovering from a small head injury, too, so I didn’t focus on a whole lot of anything. Now that I’m finally starting to do better I am trying to get back into the groove of things. I know that typically I write on here about the mishaps and amusements of what I’m working on or am dreaming of. However, today I’m going to go serious and it’s totally not about bath or body products, so if you stop reading here, I understand. *smile* Recently something occurred in my neighborhood that really bothered me, though, and even if it helps raise awareness with one person, then it’s well worth it to me.
I live in a very small, and usually quiet, town in rural Kansas. It’s not quite Mayberry, but the town’s violent crime rate in 2010 “…was lower than the national violent crime rate average by 100%…” and it “…was lower than the national property crime rate average by 100%” (via CityRating.com). After spending half of my life in a very rough city in California this is a safe little haven usually, although I sure miss pizza delivery, especially now that I can’t drive. Lol. Anyway, things do happen behind closed doors, despite the statistics, and I’m here almost 24/7, so I usually know when things are hitting the fan on my sleepy little street.
For the past year the peace was disturbed by a couple that moved into the rental next door. Screaming, yelling, loud thumps, crying, and even things being thrown around outside. When I heard crying and a sudden silence I called the police, because I was scared that she had been seriously injured or killed. Sadly in rural areas the police aren’t usually in the area, so it often takes twenty or so minutes to report to a scene. Thankfully she wasn’t seriously hurt, but didn’t press charges. For several months they continued a horrible cycle of their form of peace and then have violent fights, sometimes leaving her with a black eye and once even an injured arm. I called the sheriff every time and finally a few days back there was a huge fight as they were being evicted. Police officers and sheriffs descended on the neighbors as things started to quiet down, and they were both arrested. There’s a lot more to the story, but that last fight really scared me. The guy had always creeped me out anyway and I don’t handle being around angry guys very well, and the police had made the mistake the first few times of making it obvious that I had been the one to call in. I heard the shouts and looked out the curtain to see them shoving each other next to a fire in their backyard. Then he looked up and saw me as she dashed inside. I figured that yet again nothing would come of it, but that I had to call the sheriff and try to get her help. I couldn’t do much for her, but I could do what no one did for me.
It’s not something that I discuss often, but that last fight that the neighbors had, and the anger on that guy’s face when he looked at me, triggered a flood of memories and fears. Just a few months after I turned 18 I moved away to a city with some “friends” (what we think of as friends when we’re young and naïve) and shortly after that I got raped while I was passed out from drinking some stuff that this hot guy kept pressuring me to drink. Ah, the naïve belief in humanity was strong back then. To make a long story short I was ashamed and didn’t know what to do when I realized that I was pregnant from that almost completely blanked out night. I was raised that bad things didn’t happen to good girls. And it was one of the few times I had colored outside of the lines, so to speak, so obviously I was bad and had to figure it out on my own. When I told the father he insisted that the child would know him and spun lots of stories about how well things would work out. I give him credit for being a really amazing speaker that is incredibly believable and could probably talk you into buying a bag of dog poop from him. Add being terrified out of my mind to that skill and I believed it would all work out.
As I was getting ready for work one morning, about four-and-a-half months along, my preparations woke him and he was furious. He didn’t even bother to fully get out of bed when he hit me square in the stomach. Of course he wouldn’t let me go to the hospital or leave the house, because no one could know what had happened, and it was somehow my fault anyway, so I miscarried there at the apartment. He threatened to kill my parents and their pets if I ever told or left, and since he had killed his own baby, I believed it and stayed. Thankfully I can’t remember all of the abuse over the following six or so months and what I do doesn’t need to weigh on anyone else’s heart or mind. I tried so many times to get away, but no one ever opened the door when I managed to run outside and was crying for help. None of my roommates ever called either. Every time I would be punished and reminded that my parents were going to die if I left or told. He made sure I was isolated and worked hard at making me feel absolutely worthless, not to mention terrified for my family. I didn’t have much to live for anymore, but they didn’t deserve to be hurt by what I had gotten into.
Finally in April of 1999 he attempted to strangle me to death. I can’t tell anyone about most of the details, but when I blacked out I had this moment. You can call it a hallucination from lack of oxygen or a clarifying moment of faith, but a sense of calm washed over me and the words that if I didn’t get away tomorrow I would die that night went through my mind, and I knew it was true. I wouldn’t die this time, but I wouldn’t survive another. When I came to he was crying and shaking me, with lots of apologies and reasons that it was my fault tumbling from his mouth. I stared at the ceiling and didn’t move for hours, except when he ordered me to do things, and then I would obey.
He made a mistake that next day and left the car with me with promises of how he would make things up to me once he got off work. I drove to the town where my mom and stepdad lived and called them from a payphone. Some rules that he had ingrained into me were still hard to shake, even after what he had done, and I wasn’t allowed to go to their house. Thankfully just by my saying where I was my parents dropped everything and came to me. I didn’t even tell them about the abuse. They simply asked if I wanted to leave and if I did they would move me out that day before he got off work. And that’s what we did. I started my life over on a Good Friday.
It’s been a hard journey, but I found a “good ol’ boy” that wasn’t afraid of my emotional baggage and helped me learn to trust again. I still look over my shoulder when we go to that city, although we usually avoid it, and I still have problems when men are angry or upset. Time and ten years of marriage has helped with a lot of that, but seeing my neighbor with that look, the same as what I looked into as I was being strangled, shook me.
So I ask that if you suspect that something is going on behind closed doors, please call for help. The worst case is that the police check and find nothing wrong. If someone is danger and doesn’t feel as if they can get away, they might not make it out alive if you don’t spare those few seconds and free phone call. It’s a small thing that can truly save lives. We all know the police, but if you happen to know someone, or are yourself, that has survived, the following information can help them on the road to recovery. www.thehotline.org or 1-800-799-SAFE (7233) can help those that are dealing with the effects of abuse, and most have such a jumbled up view of their self worth anymore that they consider suicide, so 1-800-273-TALK (8255) can be a very valuable resource when they are feeling lost. The necklace of bruises faded long before I learned where to turn for help. Bad things happen to everyone and we really need to raise awareness. Domestic abuse and suicidal ideation shouldn’t be ignored and we DO need to get involved. Help is a phone call away. Even if you write these numbers down and leave them stuck to the refrigerator or bulletin board, or this confession spurs a discussion with someone, you might just save a life.
Georgia's Pampering 