Category Archives: Life as a Spoonie
I am gobsmacked. Straight up, holy Scooby Snacks, you name it, shocked! It turns out that everything that happened in March, which caused this “massive progression”, was completely different than originally thought.
Back in early March it was believed that I contracted H1N1 with a very nasty and acute sinus infection following, which triggered a huge progression in my Fibromyalgia. Nope!
My awesome doctor started me on Tamiflu as a preventative the day I was exposed to H1. Yet I still presented with difficult flu symptoms, so it got chalked up to my immune system laughing at attempting preventative care. Since the week on Tamiflu, as of June 9th I finished my last pill in my fourth course of heavy duty antibiotics and still have the same weird symptoms that are like a sinus infection mixed with something weird. It turns out that the Tamiflu worked. While at the hospital, just days before the announcement of Covid, I actually contracted it. The presentation of symptoms were of a medium case of Covid that didn’t require hospitalization (I know, I’m amazed by this too!). Following this was the start of what has been anecdotally called “post Covid syndrome”.
It threw my health into a bigger tailspin than anyone could figure out and made my Fibro absolutely unrecognizable after my getting to the point of knowing every warning sign of what was about to happen, from having it for so long. And without my realizing it my symptoms got so bad that I believed I had progressed so rapidly that I was actually dying.
My amazing concierge doctor noticed the change in me and immediately ordered Home Health, since I had absolutely no quality of life anymore and was on bedrest almost around the clock. I had so many falls that one went so bad that I fell and hit my disability handle and hurt myself pretty badly. I had a body and symptoms that I couldn’t recognize or identify.
Home Health (HH from here on out) stepped up FAST. Within just a couple days I had both my nurse and PT Evaluators here to establish symptoms, goals, and all that good stuff. During the PT Eval he looked at me and said that he’s treated Fibro for many years and this wasn’t the presentation of a Fibro progression that he’s ever seen. It sounded more like the after affects of Covid than H1 or Fibro. Say what?!
That night, once the Fibro brain fog lifted as it usually does if it’s nighttime, I went down the research rabbit hole. I went to all my trusted sites from when I worked in Neurology first. They led to this, which led to that, and then to several epidemiologists, and finally to one epidemiologist who also focuses on ME/CFS (Fibro’s official initials nowadays). He started a list of post Covid symptoms that general population has been reporting, plus the extremely weird symptoms and changes that ME patients have been reporting, along with their “recovery” stories. Their Fibro had undergone dramatic changes that made it unpredictable to them too. And I had almost, if not all (it’s daytime, so happy brain fog time), of the post Covid symptoms.
This explained why super heavy hitting antibiotics couldn’t kick my symptoms for the first time. It explained how I could suddenly get bouts of difficulty breathing and get the barking cough back, and it suddenly disappear as fast as it came on. The increased falls, even more acute fatigue, unpredictable new symptoms that were attributed to Fibro, pain that my usual pain regiment can’t even take the edge off of, and even the massive swing of depression despite having finally gotten stable with the right antidepressants. We threw the proverbial kitchen sink at this and I couldn’t get better, so of course I thought this was it. So I just waited for someone to accidentally expose me to Covid and finish it off. No one expected that I’d survive it.
I survived. I have Fibromyalgia with a laundry list of other Invisible Disease comorbidities and I had a case that didn’t even get diagnosed as Covid until I was in the negative testing phase. And everything I have been suffering since St. Patrick’s Day fits absolutely perfectly with this syndrome of after effects.
HH is still a Godsend and although tiring, has all ready improved my life (not just with this whole revelation), and I’ll continue to learn how to manage, but from a massively different perspective and now with hope. We actually have long-term goals again. We’re celebrating. We’re learning how to adapt, especially since I may not get back to my cruddy pre-March “normal”. And we have to be super careful that I don’t get exposed again, since there is absolutely no idea if I can be reinfected or develop something else from exposure. We don’t even know at what point I technically stopped being contagious, but thank goodness I was all ready under quarantine for H1N1!
But a sickly gal with Invisible Diseases is a survivor. I’m so damn thankful and proud of that. My body pulled through on its own for the very first time. And who knows, maybe having Fibro helped fight it? “This is my territory to terrorize, so back off!” I know, absurd, but it makes me smile to think of my Fibro smack talking a pandemic trying to take me down. *grin*
So to the other Spoonies, have hope. I know very well how that seems impossible, but I’m proof that we can do this. And I’m here if you need to talk, have questions, or want to see if maybe your weird new symptoms match. And guess what? The government is finally starting to notice us and see that they need to help us. This pandemic is expected to slam a lot of people with Fibro and other post-viral Invisible Diseases. That makes us an even bigger portion of the population and they have to see us after this. We CAN survive and they WILL have to research how to help us. I’ve always believed that with every bad thing there’s at least a tiny silver lining. This horrible situation will finally bring us hope. Suicide and progression aren’t all that we face anymore. HOPE.
I think we could all use this message right now. In this time of fear, grief, depression, and isolation, most of us have had time to evaluate our lives, circumstances, and even self worth. Many are struggling with having had the time to stop and actually reflect, and we often end up with some dark thoughts. So please remember that YOU ARE WORTH IT. You always were.
I’ve spent my entire life seeking approval and recognition. I felt like a failure because I became disabled and usually can’t do things that garner acknowledgement and praise. I have had to leave my career and now end two business ventures.
I put a lot of work, time, creativity, and my precious little bit of energy into my bath and body business, and often my products never sold or were commented on, and it hurt. I felt like I had failed at another thing in life. Now I realize that I sought recognition and praise, when I really needed to be proud of myself without requiring others to say it.
There’s a difference between being humble and knowing your self worth; knowing that you are worth it. I read this and it just clicked suddenly, and I hope it does for someone else reading this, too. Whatever you do, even if it’s taking a rest day because you’re out of spoons if you’re a Spoonie, or you put yourself at potential risk of illness by being an essential worker, you are awesome. You are awesome just because you are and hopefully this helps you to be proud of yourself without waiting for someone else to say so, to make you feel it. While you ponder this, if you are needing this message, I acknowledge you – that you’re awesome and worthy. I know that you are stronger and better than you realize, regardless if you’re successful, good looking, disabled, a nerd, searching for the right career, or just taking it day by day. We are worth it.
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.
Yay! No more H1N1 self quarantine! I came by that status the hard way, though, as any Spoonie probably would.
I couldn’t get over the symptoms after I posted about my delayed recovery and realized that I most likely had a sinus infection that was causing the fever (which is a way different fever than normal people get and the unaware are so disbelieving of that), which kept extending the self quarantine as possibly still contagious. So I contacted my doctor in hopes of getting an antibiotic, but the continued symptoms and my immune system issues really concerned my doctor, so she referred me to a colleague in KC, K, who works with a facility that works with the CDC, and I had to do this online questionnaire. After review they decided that they felt I was high risk for having COVID and wanted me to go to the facility at KCK for testing during this certain time frame.
While this response was making its way to me, I began to present with an acute dry cough, wheezing, and shortness of breath, with a lot of pain from pulled muscles due to the coughing (and the fibro having fun, I’m sure). The only way I could breathe easier was by laying on my side almost flat and not moving, especially not being reclined or sitting up facing forward. It got bad enough that L called a Topeka hospital (no way I could make a ride in a truck to KC with this going on!) and had to go through an online triage basically. They decided I needed to get to the respiratory center they set up as quickly as possible. We weren’t really sure what this new center was that was created to respond to this outbreak, so we packed my “go bag” that is prepared any time I may be at risk of staying in a hospital (you learn to plan ahead when you have a chronic illness). Well, I laid on my side on the bed, trying to dress, and he added the last minute items to the bag, since I had one ready for a possible trip during the whole H1N1 thing.
So, we quickly (okay, very slowly because I could barely walk without falling to my knees coughing) went to the address the nurse gave. It was a mini tent city erected in front of the hospital’s north clinic. People direct you to drive into the first tent and direct the flow of vehicles, while workers move between the vehicles doing their assigned tasks, such as one for symptoms, another for vitals, etc. With each worker the driver is directed to the next area for the next triage area, with directions to keep windows up, patient is masked except when asked to remove it, etc. It’s kind of hazy, but I think at the second tent is where the doctor did the drive up exam. He confirmed that it sounded like a bacterial infection (sinusitis), but with my high risk status with L being among the public at times and my compromised system that was even further compromised, I got to have an H1N1 nasal swab and a COVID swab, for good measure. In less than ten minutes the H1N1 test came back negative and the self quarantine was no longer needed then. He prescribed an intense antibacterial prescription and we moved forward to the next swab section. The H1N1 was like a small bendy bottle brush jammed up the top of my nose and I kept wiping under my nose, thinking I had a bloody nose. I laid sideways on the console while waiting for the next worker and it hit me how surreal the whole experience was. And then SHE came to the window. He rolled down my window and she asked me to pull my mask down, and told me instinct would be to pull back, but don’t, so I pushed my head back into the seat cushion. Good thing I did because that thing removed mucus somewhere near my eye socket, because that tear duct immediately started streaming. *laugh* Holy biscuits and gravy! She closed the test container and said to go ahead and leave.
As we were leaving it hit me how bizarre of a situation we had found ourselves in and saw firsthand how intense this Pandemic’s treatment is, even in our neck of the woods. Medical workers in varying degrees of protection, from droplet protocol all the way up to a sealed suit with breathing unit, and seamless triage the whole way, with preparation to send suspected cases to quarantine. Sitting in the tent city was like something from a science fiction movie or alien visitation thriller. It was a mixture of feeling like a zombie checkpoint and a prep station for scientists interacting with some unknown alien craft.
It was definitely the safest exam I’ve ever had, despite it all, because I wasn’t exposed to any additional conditions, which is a first. It was definitely an unexpected and intense event in my life, so I can mark such an occasion off of my bucket list (I’ve lived an odd life with incredible and strange occurrences in it, so I wanted to make sure to have one more on my bucket list. Lol). And both nostrils really hurt, but I could breathe through them both for the first time in weeks, since they swabbed everything in my sinuses up to near my brain, it felt like. *smile*
I’m now on my fourth day of the antibiotic and responded well almost immediately, so my usual post-illness sinus infection got really bad at one of the worst times in this century. I’m thankful for the incredible workers who are on the front line of this and it increased my awe of their bravery by 100%. While I stay laying down to ride out the massive side effect of nausea that my Marinol doesn’t come near stopping, I’m still waiting for the other test results, but my cough has resolved except when I try to actually do something. I have an incredible other half that braves exposure to get my prescriptions, foods that will help or may stay down until the current prescription dose’s nausea lets up, and takes care of keeping me settled. It’s funny that in all the marital advice I was given almost 16 years ago, no one ever said that you can fall even more in love with someone when the times get bad and your partner decides to weather through those times with you. In the meantime, I got us an annual subscription to BritBox, slept nearly 24 hours straight at one point, and we had a reclined “date movie night” streaming a rental movie early this morning. *laugh*
I wish there was something profound I could share, beyond my experience, but it really just boils down to having gratitude for those that are at risk working near others or in medical/ emergency services, those that keep working for us to be home and upset that we have the time off that we usually wish for (although everyone would prefer for vacation to be taken on their terms, paid, and hopefully one in which they can fully enjoy themselves, of course), and also gratitude for the technology that helps keep us connected. Drop a text, share silly pics on SnapChat, do a Zoom chat, or even call (*gasp*!), and then we aren’t alone in this. It is a scary world right now, with a lot of grief along this journey, but humanity has survived other threats before. Kindness, respect, and gratitude are our best bets for making it through this as better people who will someday recount how awful 2020 started out, and how we, as a collective, made it through.
Stay safe and reach out. Isolation breeds depression quickly, which is just as dangerous IMO. If you feel alone and you don’t have others to reach out to, you can reach out to this (possible) stranger and know that someone will be there to chat with through this. I know how deadly depression and isolation are, so please don’t hesitate to reach out, even if you don’t know me personally. My world grows infinitely better with each new friend. 🙂
Recently I became unable to move by myself. I became over fatigued while trying to do a little bit of housework, so after hanging laundry I laid back on the side of the bed, with my legs hanging down. My legs and ankles are my worst trigger areas, and my claim for disability strongly rested on my need to have my legs elevated to reduce pain, on top of the fatigue. And I knew I was getting worse. I’ve known since about October that my symptoms have progressed. I couldn’t bring myself to believe how far until I tried to stand up and couldn’t even try to lift my leg without screaming.
Thankfully L was still home, instead of working, and came when I called. At first it seemed like an annoying “my hip locked up” kind of thing, but whenever we worked to get my legs to move, it was either a case of excruciating pain or inability to move. He got my left leg bent and close to my body, and then cleverly freed his hands by leaning his body into my leg to hold it in place. With one hand under my back and the other holding my right leg, he managed to turn me on my side. Poor guy probably still has ringing in his ears from my scream, but it was his clever manipulation that enabled me to then begin to move my leg. He did socket manipulation to make sure I didn’t have anything wrong in my hip itself, plus it helped loosen the tightness from the inflammation that was all ready flaring up. After some work, we were able to get both legs bent without assistance and got me into a mostly standing position.
For days I had a lot of pain, obviously when walking, but also trying to sit or lay, and found that I could actually sleep or focus on something like reading (instead of the pain), if I lay in the fetal position on my inflamed side. My whole thigh and connected muscles ached, but when my inner thigh and really low back got intense, we realized the pain wasn’t responding to my meds because it was mostly likely from my nerve. I was pissed off at myself for not thinking that such a simple thing as laying back for a moment to recuperate to take the laundry basket back to the laundry room could cause a problem, especially when I have my legs elevated at least 80% of the time, if not more. When L went to work was the worst though. That’s when the dark thoughts about what could I have done if it happened now, since I didn’t take my phone with me while just hanging laundry up. If I’d tried to slide off the bed, not only would that be quite a way down with the deeper mattress that we have, but I probably would have struck my head on the cabinet across from my side of the bed (it’s a narrow passage around our bed, since it’s a small room with a king bed lol). I finally faced that my body would have left me trapped in place, which turns out to be a huge fear. I’ve always found Alzheimer’s terrifying since working in a Neuro office, because these poor patients were trapped, and then auditing medical records and reading about patients who showed mental activity during neuro testing but were otherwise in a coma, unconsciously made my fear worse.
I’ve been afraid of my illness progressing until I’m on permanent bedrest for a while now, with the memories of what I’d seen and read behind one of those closed doors in my mind. (If you’re a new reader, I often compare life experiences and traumas as doors in a hallway in the brain. Things I don’t like to face or have trouble with are behind closed doors, and I’ve worked for the past two years to open and work through everything in each room I open. Apparently I have more closed doors than I had realized though.) There is another Spoonie that I follow on WP and have watched interviews of on documentaries and he has progressed to this, despite the fact that his body was in WAY better shape at onset than mine has ever been, and it makes me cry every time I read his posts or watch his decline in subsequent interviews. So I’ve known the likelihood of someday reaching that stage and have been afraid, but have worked hard at not acknowledging my progression or my fear. Every so often I’d break down privately and after watching one documentary with me L finally learned about my fear. We both set it in our minds to a later time to deal with, I think, although I am “death positive”, as mortician Caitlin Doughty from Ask a Mortician, calls it. (Btw, she is phenomenal and I highly recommend at least watching her interviews and her “Confronting Your Death” YouTube episode, and checking out Order of the Good Death.) Anyway, as a way of being positive and leading the best life I can while I can, I made a kind of bucket list of experiences I want to share with L and “my created family – biological and emotional”. I’ve worked hard, especially with the help of one of my best friends, to accept using my wheelchair the next time I go to an event, like when L and I went to Branson last Fall. Yet, somehow I shoved the reality of my symptoms worsening behind a door. While laying in bed recovering the door opened, though.
I’ve always acknowledged that Fibro has stages and some super lucky people even get to go into permanent remission of their symptoms. Nobody acknowledges that there are last stages though and I began to wonder why is this different from other diseases? Cancer is one condition that is openly labeled with stages, among others. Are doctors afraid to label Fibro stages because it’s an invisible disease or because it has unknown origins? Maybe because each person has their own journey and my “good” day could be a horrible day for another Fibro sufferer? I became angry that my doctors all emphasize that a person can get hit by a car and die any day, so live each day to whatever my fullest is without worrying about my progression, but none acknowledge that I was progressing to the next stage. I also got really mad at myself for closing my fear and knowledge that I had all ready progressed behind a door. I was mad that I hadn’t been strong enough to actually face it or even admit it to myself, let alone others (and believe me, this is a super hard admission to write about). My “episode” scared those close to me and I think we all had to admit that things are worse than I had been admitting or allowing others to see.
I don’t feel that it’s fair for my doctors to refuse to acknowledge that I’ve entered a new phase or that it’s terrifying to have progressed. It doesn’t feel fair to just say “I have Fibro along with the commonly associated conditions”, when saying “Stage 3” or something like that could emphasize to “normal people” that I have more needs and worse symptoms than others. They’re used to having the stage given as a measure for their compassion, willingness to assist, or even their concern. Why don’t we have the right to have recognition? Why do we always have to fight for every aspect of this often disabling chronic disease to be recognized and acknowledged?
So, I decided that I can be angry and still live the good life while acknowledging my progression. I’m going to get a bold haircut (for me), dye my hair a dramatic color (full on ruby, here I come!), and I’m going to try to at least get the outline of my half sleeve tattoo done; all hopefully soon. In the meantime I’m making plans for how to get assistance when I’m alone and don’t have my phone in the room when I have something happen. I’ve made my decisions for how I want my death and body to be handled. I’ve started making plans for the few items that are important to me to be passed along to those I care about (just a small tip: talk to those you want to inherit something. See if they actually want it. Too often we leave behind things that the recipient has no desire to receive, so if it means enough to you to leave that item as an inheritance, talk to them first). I’ve even started to give some of “my treasures” to the inheritors, because I don’t want to add to L’s responsibilities even more, especially knowing that further progression without dying means he will have to take on more of a caregiver role. In the meantime I’m still setting goals for my good enough days, when I can do a little or sit guiding someone, such as making more product and getting my small business going again. That’s one of my biggest goals for this year. A friend has agreed to be my business helper whenever it works for us both and actually looks forward to it, so I’ll get a small piece of “me” back. What I can do in my daily life is limited, but I have the power to make the most out of every minute of them, no matter how tired I am or how much I hurt.
We all have the chance to leave a legacy, even if it’s just a small one. Mine is a tiny voice to raise awareness about this disease and fight for equality for us Spoonies. Like they say in my teen favorite musical Newsies, “Bryan Denton:
Sometimes all it takes is a voice, one voice that becomes a hundred, then a thousand, unless it’s silenced.” Mine is one of the voices joining the others to help get Fibromyalgia fully accepted and to get the needed research to help others. I may absolutely hate admitting how sick I’ve gotten, especially outside of my very small circle of people that I’m honest about it with, but I can be thankful that I have a way to be one of those voices; to be part of the change.
A lot has gone on since I last posted and I don’t think most would be of much help to another person, so I haven’t bothered sharing any, since I’ve always wanted this blog to inspire or help others. However, I learned a very valuable lesson in the past week.
L surprised me with an amazing trip when Branson, MO started their Old Time Christmas season, which I’ll write about and share amazing photos of later. We knew that my being around people and being active (there’s a special old time, craftsman type of theme park there, where they keep old talents like blowing glass and blacksmithing alive, plus I believe the award for the most Christmas lights in the world), would be hard on me. This was kind of my goodbye trip to going as a “normal” person, so to speak.
We’ve gone there off and on through the years since we honeymooned there, fifteen years ago. One can never predict the course of an illness though and mine is stealthily taking away my ability to walk much, even with my cane, so on my list of “before I’m wheelchair bound” bucket list I had down Branson. Since I’ve progressed so dramatically within the past 15 or so months, he secretly planned to fulfill one of my biggest hopes. We knew I’d catch a cold being around sick people, since for some reason as a society we do not believe in staying home when sick, and that it would be physically difficult on me, despite the luxury accommodations that he splurged for to help me. Shortly upon coming home though, as my body was gearing up to get really mad about the trip, we met our neighbor’s litter of accidental puppies.
They’re noisy, but they are the cutest puppies and so darn sweet underneath it all. We developed puppy fever and wanted to expand our family again, knowing that we will never try to adopt a human again, so the more fur the more love in our home. *smile* As I was partway through my after trip symptoms we fell for two puppies out of the group and decided to go for it.
We went through that whole new puppy craziness of buying tons of things to take care of them, since everything of Bo’s was donated when he passed, and real life set in. The little girl and boy had neither been truly housebroken, as we thought he had implied, so it was puppy pads, paper towels with Lysol, and blocking off the kitchen or crating, believing a few days and we could move to the next stage, like we did with Bo. These little ones have so little interaction that they have massive separation anxiety though, so I had to literally be in sight and usually within their reach or there would be crying. We tried the whole “ignore and they’ll cry themselves to sleep” technique, especially with crating for brief periods, but the noise! Instant migraine and when the boy would hit top pitch, somehow it made both elder cats toss their cookies immediately. Triple the fun!
Long story short I ended up living in the sectioned off kitchen, taking tiny naps when they would nap (but as every sick person knows, it takes forevvvver to fall asleep, so more than an hour was mind blowing), and becoming very hurt by their playful nips and puppy claws, plus not being able to relax in my “accommodation” spots, which are set up to minimize pain and help my body rest. For the first time ever I looked in the mirror in the bathroom (a bathtub makes a great playpen for pups, let me tell you, especially in a tiny bathroom) and I actually saw my illness begin to physically manifest. There are tons of supportive memes that Spoonies share of how we would look if our illnesses weren’t invisible, with a body covered in bruises, sores, etc. I saw two black eyes, skin that just looked…wrong, and bruises. My glands along my throat had swollen and I ended up coughing up some interesting stuff, while most of the rest of my body started shutting down until I was in such low-spoon usage that I didn’t change clothes for days and ended up laying on kitchen mats because my body couldn’t take sitting upright anymore. My veins are growing less prominent under the surface of my skin thankfully, but it was kind of creepy to see the bluish lines running along my entire body.
Add to it that housebreaking never caught on well, although I made a tiny dent, and the cats went into a tail spin of bad behaviors, including trying to beat the muzzles if a pup got close enough. To be fair, with the bite force these little babies have, I was scared of what would happen if one got hold of one of the cats, too. At least the cats swatted without front claws when the pups got in reach (done for medical reasons, not without considering their health and the research behind it, trust me).
It became a nightmare situation made all the harder because I spent nearly every minute with them, except when L kept himself up when he got home from work, to take care of them so that I could get undisturbed sleep. I fell in love with the wiggling bundles of wee and wild tongues. But the hard decision had to be made to either return them or find care while he worked and slept, because I was going to be hospitalized. The returning was a disaster within itself, even though it was less than a week later, and the only thing that tipped the scale was me actually showing an outsider just how sick I looked.
The worst is that the neighbor still hasn’t taken the litter where he said he was and every day they get put in their pen periodically, crying away with the parents, especially since it’s so dang cold. And if either of us are outside, the two remember who we are and want us, because they knew love for that little bit of time with us. Which makes it hard to stay strong, but being terrified of the alternative helps dampen it, admittedly.
So, there’s the back story to this change in perspective that I developed. When the war (puppy) zone got picked up, cats realized they could roam freely again and had access to Mom, and I went on bed rest, suddenly nothing ornery that the twins did, or the squabbling between the older and younger generations, bothered me. I’ve actually found myself laughing at the feisty antics of Zane stealing little things and taking them around the house to beat around (and try to shove under the oven like everything else lol). I separate squabbles, but I understand where they stem from and do it calmly without anyone getting in trouble. The “Trouble Twins” aren’t so bad when the perspective has been tweaked.
I’m hoping to cling to this lesson and learn to apply a change in my perception to that bucket list I’ve made. I still want to do as many things on there with L that I can before I’m permanently bed bound, but it’s not before I’m in a wheel chair. That’s just my pride and fear of considering myself “less than”, when it’ll actually enable me to continue trying to live my life to the fullest. I’m going to try to challenge my perspective on a lot of things and see what I can improve; in my life, in my character, and hopefully my relationships. Seeing the world through the eyes of a chronically ill person can be a little tinted, or jaded, so I’m hoping to do better about how those I care about perceive my actions and being a lot more understanding of how difficult it is for them to understand such a bizarre condition.
I once read and didn’t really grasp the saying until now: “Instead of asking why me, ask what can this teach me”.
When I became disabled at such a young age I was still at the point of life where I measured my value by my salary, my career position, my good impact and service to the community, and even my housekeeping skills in trying to balance being a working wife. I’m not sure if that would have ever changed if I hadn’t become disabled, but I’ve struggled a lot with self worth, because I didn’t change my criteria for value even when my life and abilities changed so dramatically. I’ve carried so much guilt for so long over things that are completely out of my control, all the way down to being unable to do housework or even change my clothes sometimes.
Instead of viewing my bath and body products as a creative outlet that also meant that I could help others, I measured it as a ruler for success. If I couldn’t have my career, then I should make a success out of a home-based business, especially one that allowed me to be creative. However, it has never been successful enough to even turn a profit (partially because I was always experimenting with new ingredients that were thought to be helpful for various ailments, or buying new scents to see if they might fit in, or whatever else caught my eye, so my supply purchasing kept me well in the red *laugh*), and I judged myself a failure.
I failed at keeping my health, at being the wife I expected to be, at becoming a mother, keeping house, cooking, and even making my own business at least break even. More health issues have been draining me, I’ve been on bedrest a lot lately, and we’ve changed up my treatment plan to see if the new plan will help improve things (3-4 months before we know…seriously. You tell someone who has no idea what tomorrow will be like that it’ll be 3-4 months before we know if this works; that’s an eternity! Silver lining time – I get to hope that things will improve around Christmas!). With everything I became extremely angry. I became mad that my illness has taken so much from me, that the adoption didn’t work out, that our basement flooded when we had a big storm and lost power for an extended time so our pump couldn’t get the water out, that I felt I couldn’t make any extended plans (even flexible ones) because I have that stupid mortality clock ticking in my head, and super angry that I felt like a waste of tax payer money that was just waiting to die. That’s the brutal truth.
Thankfully I saw my amazing disability therapist a couple of weeks ago and not only did she have my blog posts to be able to gauge my emotional state, but she really got to the heart of my angers. Fear. That mortality clock is ticking because I’m afraid of what awaits me when my condition worsens, but she pointed out that healthy people die every single day, so my clock isn’t any louder than even hers is. And I, and those close to me, have learned how to make accommodations for how my illness has changed my abilities, so we’ll just change a bit more for anything that comes my way. My greatest fear though, it turns out, is my lack of being able to contribute and be of service; having absolutely no value anymore. It’s going to be a long work-in-progress to change my definition of what makes me valuable, but being of service has always been my top priority, and she said something so unexpected and profound that I’m still reeling, honestly. She wanted to know what I’ve been doing for a creative outlet since I haven’t been able to make products, because being creative is a huge part of my therapy and massively beneficial for my mental health, and I had trouble explaining my twist on digital photography (my photography on Second Life), so I showed her my Flickr photostream.
I had just posted a series playing on the movie theme of Gidget©, plus pictures of my little SL family, a scene recreated from the latest version of A Star is Born©, and my random ones with learning how to experiment with a special lighting program and editing. She looked through them with this beautiful look of awe, as if she was in a museum, and asked me if I realized just how much I contributed with my photography. She said they were like paintings that were hung up for tons of people to see (since it’s a digital forum) and I get to evoke feelings in the viewers, just like regular artists do, such as nostalgia, joy, and amusement. I literally got teary eyed over the concept, since I could equate that to how it was when I competed with my poetry and had people thank me for what I wrote about.
She went on then about looking at the value of what I give to the others in my life and even in my blog; how I work to help or enrich lives, no matter what my illness is currently playing. She said I also need to work at seeing myself through the eyes of others and seeing the value that they place on me (yet another one that’ll take me awhile *grin*). I have felt a huge shift in my internal attitude and a big, nasty, pile of guilt has fallen off of my shoulders. I may not be able to contribute in the ways that I want to, or deemed that I should, but I’m developing a creative talent that has the ability to provide joy and comfort to others. I was so angry at what was taken away that I didn’t see this blessing that God had given me to replace the vacuum. I didn’t see that even with my old criteria for value, I have value. I may not volunteer or do big acts of service, but I can still contribute and be of service to God by helping others. It’s a huge honor to me to think that my fun little Gidget© photo shoot on SL is just as meaningful a work of art in a gallery or museum. It’s quite an honor to be disabled with a chronic invisible illness and find at least some of my value again.
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.
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!