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The Clock

I’ve avoided writing for a bit, because I haven’t been in the best mental space. I try and sometimes I manage to fake it pretty well, but I made a promise to myself when my friend suggested I start blogging. I’ll always be honest, vulnerable, and tell all about those messy moments, regardless if it’s when I’m ruining a batch of soap or writing about life. So I avoided writing and hid away within myself, and hid away from my own fear as much as I could. I don’t want to take a pill to make me stop feeling this right now and to stop myself from writing. And I don’t want to hide right now.

Two Fibro sufferers (that I know of) stopped their fight. They couldn’t take this invisible disease robbing them of just one more thing, take the pain that nearly drives you insane sometimes, or take another medication that will hopefully make some invisible disease that is barely understood a little bit better. Or maybe they couldn’t stand the thought of being even more of a burden on someone they love – needing help to even wash their hair when there are only five spoons for the whole day, needing someone to make something for them to eat that their body might tolerate, and then needing that person to be their waiter and housekeeper. Maybe they couldn’t handle their messed up minds sending wrong signals and whispering horrible ideas, until one horrible idea isn’t so horrible. For whatever reason, they found their own version of dignity in death.

Another invisible disease sufferer, who has a laundry list of conditions like most of us do, is really struggling. He started out a lot healthier and stronger than I did when it hit, it has made life much harder for him than for me, and he’s younger than me. We exchange comments online sometimes, so we’re not close friends, but there’s a deep connection to other sufferers that is so different than a friend or acquaintance, that there is a strong empathy and sympathy.

I’m weeks away from turning forty and two connections are gone, while one struggles even harder, and all three are or were younger. It’s honestly messed with my mind and feelings a bit. I suddenly exchanged the biological clock of motherhood for the very loud clock of mortality. And trust me, I know how melodramatic that sounds, and even how morbid it seems, but I’m being honest. When my big relapse started, I truly thought that as long as I was careful while sick, I’d be mostly in remission by forty. I’d miss those milestones most people hit during their thirties and just delay them closer to my forties instead. That very loud ticking in the back of my mind has made me realize that those possibilities are pretty much beyond my reach now. And I’m trying to learn to be okay with that.

My jacked up mind gave me suicidal ideation most of my life (welcome to another symptom that they’re just starting to associate with us realizing there’s something wrong with our bodies before the doctors do). With the adoption journey, the breakdown, and all the work on my PTSD, I finally broke free of most of that and want to live as much as I can. I then realized that I’ve been living for remission while being afraid of the normal aspects of life, because they might make me sicker, and that would ruin my chances of remission by forty. And I wonder if those women who committed suicide gave up when they realized that they were afraid of getting sicker, too.

I wonder what “dignity in death” is to me.

I want to live. I want to live MY life, with my husband, family, and friends. I want to make and capture as many memories as I can before that clock consumes me. For a while now I’ve felt like I was so lucky to have such an eccentric and diverse life between the first onset as a child into my late twenties. I lived and experienced more than a lot of people do in their whole lives, and I’m so thankful for that.

I’m totally glad for those people that feel like their career completes them; happily, yet still a little jealous I admit, for those people who celebrate all of those beautiful moments their children experience as they grow up; and find it beautiful when a couple has weathered all life threw at them and now shuffle hand in hand down the sidewalk in the park, to their favorite bench, where they feed the birds every day that they feel well enough.

Probably deep down most of us want at least a taste of all of that. And we all mourn when terminally ill teenagers fall in love, knowing that they can’t even allow themselves to dream of wanting even a little bit of any of those lives. How many shed a tear for people who just can’t fight their hardships anymore? When did we start to judge them for not trying harder, when it’s really not so different than those terminally ill teenagers, in the end? Those people tried to live, but they were robbed of a lot of their lives and dreams, too. Some people never get to grow up, some never get to experience the easier lifestyle of first-world living, and some slowly lose every bit of themselves that they took pride in or used to do that brought them so much joy. And it sounds horrible to anyone that isn’t suffering or having to be a caregiver, but sufferers are sometimes jealous of dementia. Sometimes we long to forget what it was like to be independent, to truly live in the moment without worrying about how it’ll affect the next week, or to stop hearing the tick of that clock once it starts. It seems selfish and morbid, but there’s the glaring truth, making me want to hide from being someone who could seem so horrible, especially after working for a neurologist and watching family members succumb to the illness. I have a hard time facing that every day brings at least 15 pills into my body and brings me closer to the likelihood that I’ll be hooked up to tubes to administer my meds, not to mention to feed me, since it’s getting hard to eat, and that the bed we hoped would be Kiddo’s will probably be given away some day to make room for the rolling hospital bed that I may have to live in at some point. All while that damn clock ticks without any alarms to warn us of how much longer we have before the next step in the battle starts.

So I put a swirling pearls design scrapbook sticker around the shaft of my cane. I got an Echo Show for myself and my nieces, so I can truly see and hear them grow up until I’m too sick to want them to see me this way, started planning happy moments that I can experience with my husband while I can, and made myself be brave enough to write this. It’s one of the few times that I’m brave enough to try to explain, to leave my thoughts and feelings of my experience for those I love, and maybe even dare to hope it helps someone else in some small way.

I don’t know when that clock will tick too loud for me or where the line in the sand is for me to find my dignity in death. And I can’t say if dying naturally with all sorts of bodily failure, with my husband as my caregiver, will be my version of dignity. Or if my dignity will be a quiet moment wrapped in towels and one of his flannels, so I can envelope myself in his scent one last time, with a bottle of pills and a last conversation with God, trying to keep from being any more of a burden. It’s the one thing my illness can’t decide for me and one thing that I don’t give a fig about being judged by others about. It’s the one thing that is 100% mine. And while I can, I’ll muffle the ticking of that clock and try to live. I owe it to the part of me that keeps fighting this illness, and I owe it to every moment I get to steal despite all that has been stolen from me, and want to honor those extra moments for those that couldn’t fight anymore.

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!

Fibro Insight

I had a required physical (ironic, but required to get my meds, even though I was just there two months ago for a regular visit). Anyway, the prodding and such caused a nice little flare, and as I sat reading emails one came in from a Fibro newsletter I get. They decided to do a post of Spoonies sharing pictures during symptom flares or how they cope with the visible symptoms. Yet somehow some people still don’t believe it’s a real condition and that there’s a community that really needs help. This is a group that have massively high suicidal ideation and risk rates. So I thought I’d share more information about it that might help others understand it a bit better or have a resource to share if they’re a Spoonie and trying to find examples to help people see behind the mask.

The Mighty post has a lot of examples of the visible symptoms that we tend to hide. They have tons of resources on their site and their newsletters are always comforting, in a way, because sufferers know that someone believes them and that it’s okay to not wear the “I’m okay” mask that we try to keep in place all of the time. Unfortunately I don’t have the umph to get on my computer, so the link will change the page directly to their site, instead of this post, so please remember to come back for the rest. 🙂

There is also an interesting study here that was done a few years ago in two countries, and then another country later, with a control population, chronic low back pain, and Fibro sufferers, that studied the rates of ideation and risk, with Fibro being sadly very high.

So, if you have a friend or loved one who suffers, hopefully these will help you understand what they’re going through and trying to hide from the world. I hope it not only raises awareness, but also more compassion. One of the most hurtful conversations that are surely meant to be helpful is that “my friend’s sister’s cousin had that and got better by…”. Sometimes, if you’re lucky, the illness and symptoms go into remission. Other times you relapse and that might become your new normal. That seemingly uplifting comment undermines their work of having a healthy mindset for coping and increases that ideation risk, because they feel so alone and misunderstood. If you feel like reading a bit more about awareness, I have a section dedicated to that on my Pinterest Fibromyalgia board (the side bar link takes you to my profile and I keep things pretty organized, so it’ll be easy to find a lot of pins to help others understand Spoonies better).

Thank you for helping me be strong enough to remove my “I’m okay” mask sometimes and helping me raise awareness. It is truly empowering and that’s one of my key habits to develop for this year. Y’all are awesome! 😀

National Fibromyalgia Awareness Day

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. 
  

The Ice Queen

I try to put a cheerful or amused spin on my illnesses, or downplay them, most of the time. In following support groups and Pinterest boards I’m starting to realize that maybe Fibromites have gotten a little too adept at these survival techniques, and maybe that’s part of why most people just don’t understand how we can be suffering so much. One of the blurbs really captured this so well and I wanted to feature it tonight, especially since I’ve been trying to be brutally honest lately about what I go through.

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I’ve been called “The Ice Queen” more times than I can count and what most don’t realize is that a lot of the time I’m barely holding on to get through the day. Breaking down makes others uncomfortable, sometimes makes me sick, and makes me feel like I’m losing control of one of the few things I can still control, so I’d rather stay The Ice Queen most days. The girl in the mirror is covered in invisible bruises and staring into the darkness that she’s afraid may fill the rest of her life; screaming in desperation to be heard by just one person, yet no sound ever carries. The people outside the window, living life out in that big world, bustling about to make the most of their day, while chronically ill sufferers are often watching, longing to be out there with the “normals” instead of trapped by the prison of their bodies.

Hopefully someday we can all learn to quit sharing those polite white lies that makes an easier conversation; avoiding the bare truth that is uncomfortable for both sides. Maybe if we try just once today to be honest about our vulnerability we will get a step closer to truly understanding one another.

Helpful Tips for Reaching Out

I fully intended to post something else tonight, but I’m in pain and thought this would be a perfect time to share a pin that came through a chronic illness board that I follow. I don’t like to talk about my pain, because it never fully goes away. Seldom is it below a 6 on a 1-10 scale, which is hard for most to comprehend, and a lot of people don’t believe that it’s real, even doctors. A coping mechanism that a lot of chronic pain sufferers develop is to blow off the question of “how are you?” We often say “the usual”, “it’s all good”, or just totally evade answering. Most of the time people don’t know how to handle a true answer and often it makes them uncomfortable. If you are sincere in wanting to reach out to someone in your life that suffers, then try even one thing from this list. The fourth one is a great one. If you do most anything from this list you will be a shining star in an otherwise nonstop darkness, so to speak. Just believe in them and be there. We usually don’t think you’d actually want to be there, or that we must be so boring to hang out with, so we pull back. Someone reaching out, even just in a text to say “I’m thinking of you” or “I just want you to know that I’m here for you if you need something” can sometimes truly be the difference between life and death for them. It’s hard to see the life all around beyond the constant struggle to make it through each day. Bless the person who originally posted this and you for reading, and especially if you ever try one.

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