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Perspective

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”.

Value

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.

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.

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