Exhaustion Comes In Many Forms

I'm having one of those nights that I think we've all had at one point in time or another. Where a wave of completely crippling exhaustion washes over you and you can't recall ever feeling so tired in your life. But at the same time, you really can't think of a proper word for it; tired or exhausted seems to fall short. 

Tonight, for me, this exhaustion goes beyond just physical exhaustion, though its presence is certainly felt. I feel emotionally, mentally and spiritually exhausted as if something has squashes all of the energy out of me like grapes in a juicing vat.

 I know part of the mental and emotional exhaustion comes from the inundation of just... absolute awfulness on the news, and on social media. The constant conflicts that I find myself wandering into simply by civilly voicing my opinion. Of having to constantly defend my right to have my opinion, to believe what I do, to exist. 

I suppose it's only natural spiritual exhaustion would follow, when surrounded with an environment of so much hate and anger and turmoil.

As to the physical exhaustion, that I've done to myself. I've been borrowing spoons for nearly three days now, as my dad had to have an operation and will not be allowed to do his normal household stuff for two weeks. So on top of what I typically do, to which I have down to a science of spoon cost, I now have quite a lot more to do on top of it, and I'm at such a huge spoon deficit right now I don't know how I'll ever pay it back any time soon. 

My body is letting me know quite severely that it's unhappy with what I've been doing via a drastic uptick in pain, so even though I want to sleep - desperately need to, in fact - I can't, because painsomnia is a bitch like that. 

But really, I'm the only one who can pick up most of his slack while he's down. My mom already runs her ass off doing stuff, adding more onto her shoulders would not only be monumentally unfair but I'm certain it would have her on crutches at the very least in no time. 

As to my brother.... he could help, certainly. But he doesn't. Or at least has yet to. We'll see in the remainder of the two weeks, but I don't have high hopes. When it comes to pitching in with housework he tends to have more excuses than a pregnant nun in confession. I don't deny that he is in pain. But who the hell isn't, in this house? I fight back tears while I clean the kitchen and sweep the floor, and then don't bother fighting them when I take our dog out to do his business because it's the one place no one will notice them. But to him, his pain is always the most important and the most severe, screw anyone else. 

It pisses me off to no end. 

Anyway. I just. Needed to rant and vent a little bit. Thanks for reading and if you're a new viewer to my blogs, feel free to peruse older posts. 

Jade

My Thanksgiving

This may seem off topic, and I suppose it is in the direct sense, but I think it's important as a spoonie to take time out now and again to remember the things I'm thankful for, especially on my worst days. Thanksgiving is the time of year, whenever and wherever it's celebrated, that people typically take time out of their day to share what it is they're thankful for. While this isn't a tradition at dinner in my house (owing mainly to two brothers who can't take such things seriously) I've decided to do a blog post instead. 

I'm thankful for my family, first and foremost, who supports and stands by me come what may. We may not always get along with each other, but when the chips are down, we always have each other's backs - and fronts - and we stick together through thick and thin. Words can't describe how much their support has gotten me through, and undoubtedly how much more it will continue to do so. 

My friends, of course, come next. There aren't many that I have in the offline world and those that I do I very rarely see. But those online are as good as gold, and I wouldn't trade a single one of them for a mint of money, because they too have gotten me through so much; many without even knowing it. Posts that make me laugh when all I want to do is cry, posts that inspire when I want to give up, even just a well-timed hello when I'm feeling alone, all of that and more has pulled me through some serious darkness and back into the light again. Thank you. Really and truly, from the bottom of my heart. (Also, thank you for putting up with my random bitch-fests about various aches, pains, and injuries on Twitter LOL.)

The family pets get their own segment - they are, of course, considered family by all of us, but I wanted to give them a specific little paragraph here. We have Pepper (whose name is short for Black Pepper [yeah, I know. We didn't name him.]) who is a Chiweenie - a half-chihuahua, half-dachshund, Turk, the brown and white gerbil, and his brother JD, the silver and white gerbil. Each one of these furred angels has brought special joy and love into my life. 

Pepper has been with us for I believe six years now, come Cinco de Mayo. He is our second dog, his predecessor, also a chiweenie named Bandit, had passed about a year before. His intelligence and unceasing attempts to talk put us in stitches, especially when he manages to actually audibly pronounce words well enough to be understood (not even joking; he's said mama, love you, night night, yes, no, time for school  [what we say when it's time for his training] and several other things - typically in cadenced growls of varying pitches and tones, but the way he uses his tongue and snout to alter the sounds makes him clearly understandable.). The way he understands what we're saying well enough to cut us looks or react in other fashions is usually good for a laugh too. But there's also how he reacts to knowing we're in pain or not feeling well, by lying with us and trying to lick at where we're sore, or snuggling against us and not wanting to budge when we're sick.  That's not to say he doesn't get into his fair share of mischief, especially as he has an apparent fetish for tissues both used and new, but overall he's a well behaved pup full of love and laughs, and he's been a blessing in this house. 

Turk and JD are in a class of their own - as gerbils they're a fair bit different than a dog, as you'd expect. But they're more intelligent than one would think, and watching their antics, whether it's Turk's constant architectural redesign or JD's incessant desire to be running on the wheel (when he isn't eating) and occasionally getting going so fast he does a full revolution on the wheel and flings himself out, they each have their own distinct personalities. They're quite loving creatures in their own way - not only with each other in how they snuggle and groom one another - but with the people in the house as well. They're always happy to see us, often hopping happily up onto their hind legs when they hear a familiar voice and running to stand atop the cabin where we always pet them from, and eager to give us gentle little nibbles on our fingers and snuggling into our hands - though JD still has to learn his own strength with his nibbles from time to time. Their curiosity and eagerness to interact and explore the world and everything in it is fascinating to watch and more often than not amusing, and the trust they put in me when they let me hold them and run along my hands and arms, trusting me not to let them fall, is, quite honestly, breathtaking. 

Next on the list comes my doctors. Without them I don't know where I'd be other than in even more pain than I can imagine and certainly much less mobile than I am now. Their persistence in not only finding treatments that work but testing to diagnose and find out what may or may not be wrong, their perseverance when results are negative and treatments don't work, is incredible. They never give up on me or my broken body. They never stop trying. They never stop working on thinking of new things or alternative therapies or medications that might work as an off-label use. Every now and again, they get a winner, and their genuine joy and satisfaction when I report something actially alleviating symptoms is heartwarming. It renews my faith that they genuinely want me to get better just as much as I do. Even if we all know I may not ever get fully better, we work towards getting me as better as I can be, and I'm reassured in and eternally grateful for the fact I know I'm not alone in that fight. 

Last but most certainly not least, I'm thankful for everything that I have that I know I'm so fortunate to have. A warm home. Food. Clothes. A comfortable bed. Clean drinking water. Books to read and the education to know how to read them. Everything. There are millions on this planet that have so much less than I do. Who are lucky to have even one thing I've listed in this paragraph. I haven't forgotten them this thanksgiving. I don't forget them any day of the year. They are constantly in my thoughts, as cliche as that is to say. I wish I could do more to help beyond what meager donations to charitable organizations I can give. 

After Thanksgiving dinner, many will leave the table to go shopping, some in rather violent altercations, for Black Friday deals. I always found this hypocritical. But I'm not here to chastise or guilt trip those of you that do this, because I know that for some of you, these sales are the only way you can afford to shop for the holidays. 

But I would like to make one request of those of you reading: Shop for them, too, if you can. Toys for Tots and other charitable drives help the less fortunate every year. If you can even manage to donate one thing, you're bringing a child a smile. 

Thank you for reading, I hope you and your families have a very happy Thanksgiving, and blessed, happy holidays thereafter - whatever it is you celebrate.

Jade

The Truth About The Opioid Crisis

With the influx of articles and blog posts about the Opioid Crisis, some may say that I'm bandwagoning here by writing this post, but honestly, I've been planning to write it for some time. My next-to-last blog post touched on the subject, dipping my toes in the water, if you will. This one is going to be a bit more in depth, and much more personal. I'm not going to throw out a bunch of tables and graphs, but I will give some statistics. And I will give the truth. The government and propaganda would have you believe that anyone on prescription opioid medication is abusing them. The statistics do not support that.

What statistics? (Note: rather than using two numbers [e.g. between x and y percent] I will go with a median number to simplify the statistic unless it's a margin of 5 or more) That only about 21 to 29 percent of patients prescribed opioid medications misuse them. Only 10% develop an abuse problem. Only 5% transition to heroin.

While it's true 80% of heroin users first abused prescription opioids, only 5% of that 80% had them prescribed to them in the first place. 

The truth is, this opioid epidemic is a heroin and illicitly manufactured fentanyl epidemic. The overwhelming majority of patients who are prescribed prescription opioid do not abuse them nor become addicted to them. Yet we are being punished for the minority that does. We are being punished for people abusing street drugs because we responsibly use prescription medication that happens to be in the same drug class.

And now the death toll is rising. But here's the thing, dear reader. The rising death toll I'm referring to isn't overdoses. It's suicides. Yes, you read that right. A steadily growing number of chronic pain patients are committing suicide because they are being cut off of the one thing that makes their lives bearable with little to no hope of reaching that point again. They're committing suicide because they HAVE no hope, because they're seen as drug addicts, as junkies looking for a fix, not as people in unbearable amounts of pain who are crying out for help and being told they just need to suck it up and stop looking for drugs. They're committing suicide, dear reader, because the fear of death is far outweighed by the agony of life they're experiencing without proper pain management. The pain management many of you who don't live with chronic pain are cheering to be taken away. 

You're killing us. We are sick. We are in levels of pain that you could not even imagine and frankly, I don't WANT you to be able to imagine. And that pain never stops, it never goes away. It's there with every breath we take, even in our sleep, it's there. 

I have dreams where my pain permeates them. I get torn apart by animals or my bones broken by falling rocks and wake up with a start... Only to realize the pain of the dream is still there. Because it's real, and often I can't move for several minutes because of the level of pain I'm in. It's all I can do to force myself to breathe because even that is agonizing. But after a while, sometimes as little as five minutes and sometimes as long as an hour, I can move a little. And then a little more. Bit by bit I coax my spasmed muscles and throbbing, swollen joints into movement and manage to roll over to reach my bedside table where I can finally take a pain pill and a muscle relaxer. Fifteen minutes later, I can finally take a full breath without feeling like knives are scoring down my back and across my ribs. I slowly work the stiffness out of my joints and muscles, and another hour or so later, I can finally get out of bed and with the support of a cuff crutch, make a slow journey the 15 feet to the restroom and back before I have to rest again as that short trip has exhausted me from the pain, and I know that the rest of my day is going to be primarily spent in bed trying to fight off pain with heat, various topical analgesics, and medications. Rare are the days I'm well enough to go out and enjoy myself. They happen, and I make the most of them. But they're rare. Because pain management has such a tight leash on it that my regimen is completely inadequate.

I'm not telling you this to earn your pity. I don't want it. I'm not being hyperbolic either. None of this is an exaggeration. God knows I wish it was. 

I'm telling you this so hopefully you can understand, just a little bit, what living with severe chronic pain is like. Why people like me need opioid medications to get by, to try to have a relatively normal life. The restrictions in place make properly treating us difficult if not impossible, and it's only getting worse.

Please, help us. We're using our own voices to speak out, but without the help of people like you, reader, people who don't suffer but who have compassion and empathy, who understand that chronic pain patients are not drug addicts, our voices may not be enough. We need your help in this fight. We are fighting for our lives. Literally. Some of us have already lost that fight. 

Help the rest of us win.

So Tired of Being Tired

Truthfully, I don't usually post many blog posts from my phone, much less spontaneously with the sole intent of complaining about a fact of Spoonie life rather than with a purpose of conveying a point. This is one of those exceptions, because, really, I need to vent a little.

I've been caught in a Fibro flare for several weeks now. I can't say it's unexpected; the change of the seasons tend to bring them on, and when you add on the fact I got normal-person sick on top of it, it was a perfect Spoonie storm. I could honestly live with the pain; pain is a constant background noise in my life that regularly shoves itself into the foreground, demanding my attention like a toddler throwing a tantrum until I attend to it and it reduces back to that background noise state. It's never totally  -gone,- it's just varying levels of presence.

The exhaustion, on the other hand... that's what makes this suck. People hear the term chronic fatigue and assume you're just tired all the time and need to sleep more. I wish it were just that. The fatigue is completely crippling. I can count probably on no more than both hands how many times in the past few weeks I've had the ability to get out of bed to do more than use the restroom or make a quick-and-easy snack or small meal. Some days even holding my phone is exhausting. Chronic fatigue syndrome also causes aches, itself, in the joints and muscles, it causes sore throats and headaches, even fevers. For all intents and purposes, it's a bit like having the worst flu you've had in your life.... but it doesn't go away.

I spend so much time sleeping, but I wake up as exhausted or even more exhausted than before I went to sleep. Then there are the days I'm dealing with either insomnia or painsomnia, so the sleep that at least seems to keep me going is denied, and the fatigue is bolstered by pure mental, emotional and physical exhaustion the likes of which makes my muscles tremble and my stomach churn with nausea, and my mind blank with white noise because thinking is too difficult and too demanding of my ever-dwindling store of energy.

When I'm on Twitter and I don't interact much beyond likes and retweets, it isn't personal. It's because it's too exhausting to type; to do more than scroll and tap either like or retweet and carry on. That's my way of reaching out beyond my fatigue into the social sphere with what little I can offer.

I'm only 30. I shouldn't feel this way. But I do. And there are many people older and younger who share this situation with me. We are the invisible people to the outside world; we rarely go out because of how drained we are. We miss out on life itself because we're putting our energy simply into existing, into surviving, into trying to make it through one day at a time.

Life slowly passes us by... and we can't do anything about it but watch it as it goes.

I'm tired of being tired. I know you are, too. We are all tired together, being drained by that invisible energetic vampire trying to suck our lives away. Knowing we aren't alone in this... It helps some. Knowing there are others feeling what we feel - physically, mentally, emotionally... it reduces the sense of isolation this brings on. But nothing will eliminate it completely. Nothing but a cure.

Few scientists seem interested in that. We usually aren't in a popular category - our illnesses typically won't kill us. They aren't contagious. So why should they bother trying to cure illnesses like chronic fatigue, fibromyalgia, ehlers-danlos, etc.? It's not like we're going to drop dead. We'll just exist in a Half-Life of pain and fatigue as the world passes us by. Best not to bother about us, right?

I know. That was bitter. And I'm ignoring the progress that -has- been made in fibromyalgia and cfs research. But damn it, I've been dealing with this for most of my life - coming up 21 years! And it isn't getting any better. Not for me, not for any of us I think. Progress may be progress and Rome wasn't built in a day.... but it seems, from my viewpoint, that people aren't aware - or don't care - about the invisible illnesses that take their toll on the millions that suffer with them.

That needs to change. Desperately.

We want our lives back.

I want a life for the first time!

And it isn't just up to those of us that are ill to fix it. We can't do it on our own. We need you, too. We need help, we need awareness, compassion, and empathy.

We need a cure.

My Doctor Is Not My Drug Dealer!

More than once in the very recent past, I've encountered people - one of which claiming to be a doctor, himself - who accused me of "conning my doctor into being my drug dealer" because I am prescribed an opiate medication. I know for a fact I'm not the only person who's had to deal with idiocy like this, and for my fellow Chronic Illness Warriors out there, I feel your pain; figuratively and literally.

For the rest of you, let me drop a bit of a truth bomb on you first and foremost about my conditions and the medications I'm on, and then I'll delve into some truth about the "opioid epidemic."

Those of you who regularly follow my blog will be reading information you're already, at least in part, aware of. Bear with me.

I first became chronically ill when I received a whiplash injury at ten years old. Spinal cord injuries are not uncommon in triggering the onset of dormant fibromyalgia. I had always been very active as a child, but as the pain levels in my body increased, my activity level decreased. Doctors then had no idea what to make of it. Fibromyalgia was still seen as a trash bin diagnosis, and it wasn't yet as common knowledge then as it is now that children can suffer from it as well as adults. It began the stage of my life I call the merry go round of doctors. I had more and more tests done, everything from xrays, mris and ct scans to full blood panels. One doctor would say I had arthritis and another would say I didn't. The only consistent finding, it seemed, was my elevated ANA. For the uninformed, the ANA test tracks inflammatory - and typically autoimmune - processes in the body. Thus began another round of tests for Lupus and other autoimmune conditions.

Years down the road, I am now approaching my 31st birthday, and my diagnoses are as follows, assuming I leave nothing out (it's a lot to keep track of): Fibromyalgia, Chronic Fatigue Syndrome, Autoimmune Thyroiditis (Hashimoto's, hypothyroid), Hypermobole-type Ehlers-Danlos Syndrome, Type 1 Chiari Malformation, Tenovitis, Synovitis, Tenosynovitis(yes, those are actually three separate things), total loss of lordosis (normal curve) in the cervical spine, Degenerative Disc Disease in the thoracic spine, arthritis in my neck, knees, and likely back, hips and shoulders, scoliosis, chronic migraines, chronic severe muscle spasms, irritable bowel syndrome, highly suspected to have Sjogren's Syndrome, depression, and anxiety.

To be honest I'm not completely sure I didn't miss something up there, but I did my best. As it stands, I'm taking topamax for both my chronic migraines and my cervical arthritis, I'm on 2800mg of gabapentin currently not only for nerve pain but to combat my insomnia and anxiety, I'm on lexapro for my depression, two different muscle relaxers that I alternate every four hours to keep the spasms under control, my thyroid medication, continual birth control due to the insane amount of pain my cramps cause along with the hypotension and anemia that goes along with my monthly, and 5/325 hydrocodone three times a day. Which, especially given I've been taking opiates off and on since I was around 16, is a low dose. I can't take NSAIDs like ibuprofen or aspirin as they give me lower GI bleeds, and oral steroids cause the same. There is little that can be done for actual pain medications that aren't opiates, and frankly, my GP and now pain management physician would not prescribe them if they were unnecessary to mitigate the overwhelming amounts of pain I experience.

I have been receiving local steroid injections when possible, but you can only get so many of those in a year. Being on an opiate medication does not make me a junkie, it does not make me a drug seeker, and it does not make my doctor a drug dealer. It means I am in pain and I need pain relief.

The "opiate epidemic" is, frankly, poorly titled. The better term is a heroin epidemic. The overwhelming majority of reported figures are of individuals using illegal street drugs, or abusing medications that were not even prescribed to them in the first place. Actual pain patients do not abuse their medications; if anything we tend to take fewer than what is prescribed out of hypervigilance in not running out on a bad day or if our prescription gets cut off. Very few people who are prescribed opiates become addicted to them; addiction is a genetic anomaly in the brain. In a room of roughly 100 people, about 4 have the potential to become addicted, if I'm remembering my figures correctly here.

People are trying to punish responsible patients who are ill - and the doctors trying to help them - for the actions of people abusing street drugs. It isn't right, and it is in no way fair.

We pain patients are in no way drug addicts. We are however drug dependent. There is a difference. Addiction is in the brain. It runs your life. Dependency however is when that drug makes you able to live your life. No one calls a diabetic insulin addicted; they call them insulin dependent. So too with pain patients. We depend on medications to make our lives livable, to some degree. Without Pain medication many of us cannot carry out our day to day activities - Even simple things like showering or cooking a meal is too much because the pain we are in is debilitating.

This isn't about pain patients being junkies looking for a fix. This is about pain patients asking for the right to live our lives as closely to normal as we can.

Are you really going to sit there and tell us, "No?"

Anorexia - The Ongoing Struggle

Anorexia is a disease that many - if not most - people have heard of. Unfortunately, very few people that have heard of it truly understand it. They seem to think it's something that easily goes away, or it's silly little girls who just want to be pretty and thin. The truth of it would shock them.

I first developed anorexia when I was 14. I had put on quite a bit of weight due to an increase in physical pain causing a decrease of physical activity - And an increase in emotional eating. I was, to put it bluntly, fat for my age. I wasn't obese, but I was well outside of a healthy weight.

After a visit to an orthopedist brought about the discovery of mild arthritis in my spine, as well as disparaging remarks about my weight, I was sent to physical therapy. The therapist, we'll call her Sharon, was thorough and efficient as far as therapy goes, but she made constant, snide remarks about my being a "couch potato" and how fat I was. I started eating less until I was barely eating anything at all - And that was only because dinner was a family affair and I couldn't get away with missing it or eating nothing.

I lost weight fairly steadily after that. I inevitably shrank down to 95 lbs at 5'7 and maintained that weight until my thyroid crapped out in my early 20s. But even at that meager weight, even though I was told my ribs could easily be counted, when I looked at myself, whether down or in a mirror, I saw that same fat girl I used to be.

I still do.

I've maintained a healthy weight for the better part of a decade now, hovering between 128 and 135. But in the past couple of months, owing to an increased appetite from continual birth control, I'm up to around 143 lbs. It's the heaviest I've been since I was put on my thyroid medication, and the truth is, I'm terrified. Not at the weight gain itself exactly. But because my brain is already rebelling. That fat girl I see is getting progressively fatter even though I know, logically, she isn't what I really look like. Already it's a struggle to make myself eat when I feel hungry rather than trying to starve off the weight I've gained.

This isn't because I feel like being skinny is prettier. This is because of the monster that has made its home in my brain that never goes away, and it's gotten stronger with the extra pounds. I have to fight to keep it at bay, to eat every bite of the fuel I know my body needs to stay strong and healthy.

Anorexia is a monster. It's a horrific disease that will try to control every second of your life. And it doesn't give a damn if you're male or female. Yes, it does effect more women than men, but men get eating disorders, too, and gents, I see you. I feel your struggle and your pain. You aren't alone.

Anorexia can be permanently beaten by some. But for many of us, it's a lifelong struggle. It has been for me for the past 16, almost 17 years. I don't know how I'll beat it, if I ever will. I don't know how many battles I'll win and how many I'll lose. But so far, I've won more than I've lost, and I'm proud of that fact.

I'll keep fighting every day, because I know the second I stop fighting, it's going to win. I can't let that happen. 97 pounds was as much of a victory as it gets; it's never going to put me in a hospital. And it will never put me in the ground.

We've got this, my fellow anorexics. We can beat this. Our health, our lives are at stake.

Chronic Life, Chronic Thoughts

I don't use the term 'chronic thoughts' lightly in this title. I also don't, exactly, mean it in the sense that they're thoughts specifically dealing with any particular chronic illness, but rather chronically recurring thoughts that crop up of their own accord, cause me to fixate on them for a length of time, and eventually taper off again.

I'm sure I'm not the only Spoonie that feels this way, or that has these sorts of chronic thoughts, especially after a round of testing. Some of you may be aware that I recently had a thyroid ultrasound, and the ultrasound, while finding many small nodules and cysts and two quite large cysts/nodules (each is 1cm), none of them, per the report, are suspicious.

The problem is, I haven't been able to get the alarm bells in my head to stop ringing. I last had an ultrasound about 5 years ago, and there were only a couple of tiny nodules then. I've been on thyroid hormone treatment since my dx of hypothyroid/thyroiditis, but recently I've been experiencing a lot of pain in and around my thyroid, as though it's trying to push itself out of the sides of my neck. My voice is getting progressively more hoarse, and swallowing is becoming a bit more bothersome, as though I'm trying to swallow around something lodged in my throat, and my energy level is in the toilet.

My T4 is in the normal range (I'm not sure why T3 wasn't tested) however my TSH is extremely low - 0.040 (Normal is 0.270-4.200). My symptoms would indicate, if anything, my thyroid is being under-treated but the blood work would suggest either over-treatment or a pituitary issue (which is one reason why I've an appointment with an endocrinologist this month.)

I'm not usually one to worry after I get an 'everything's okay' report from a scan. But this time, I can't stop worrying. It's a persistent niggling in the back of my mind that at times rises to a near panic. The last time I had an unshakable worry about my own health, it was just before they'd caught the hypothyroidism. Now I'm left wondering if perhaps they'd missed something on the ultrasound, or if they should have done a biopsy on one or both of the large nodules. If there may be cancer they didn't catch on the scan. All sorts of fun thoughts.

To that end, I have an appointment with an ENT this month as well, for a second opinion. The pain in my throat is so bad sometimes that I can't sleep at night without an ice pack across it. It's, honestly, getting pretty ridiculous. If he even suggests a thyroidectomy I'm going to jump on it. It's not as though I won't be taking thyroid hormones the rest of my life, anyway.

The hard part, really, is getting my brain to stop running itself in circles, to stop re-thinking the same thoughts over and over, the same obsessive whirlwind of worries that I can do nothing about. It's hard not to worry, which is the weird part, for me. I don't usually actively worry over my own medical issues - it's business as usual for me. But this time... I can't stop, and that's the biggest red flag of all, to me, that there's something wrong.

We Spoonies are usually pretty in tune with our bodies. We have to be, really, to be able to get through the day. To know what's chronic pain and what's an injury. So it makes sense, also, that we would be able to know when our bodies are trying to tell us something that we can't feel, I think.

A Question For Vegetarians/Vegans

Firstly, I apologize for any spelling errors, grammatical mistakes or words that simply don't belong. I'm writing this post on my Droid and autocorrect is a bitch as we all know lol.

That being said, I have a question for former meat-eating vegans and vegetarians. Well, I suppose it's a series of questions technically. Can you recommend any good meat-replacement products? I mean like... veggie bacon that tastes at least somewhat close to bacon. Veggie burgers that taste close to beef. Veggie chicken ... you get the idea.

I would like to eliminate more meat and animal products from my diet, and while I can't go fully meatless (my IBS screams at a vegetarian diet and will have me dehydrated in no time from the amount of time spent on the toilet, and also seems to interfere with the amount of iron and calcium I absorb from plant based food as I tend to become both anemic and calcium deficient in spite of eating foods rich in both and taking supplements) I would like to go as close to it as I can. I want to do this not only for my health but for the health of this planet. I'm not fool enough to think that one person ceasing to eat meat or only rarely consuming it will have any impact upon the number of animals killed for meat production, so saving animal lives isn't really on the list of the whys. I do hope that in the long run the joint effort among all of us that are quitting or cutting down will reduce the number of animals raised and thus reduce greenhouse gasses, but that's just a hope.

Anyway. I've tried boca burgers and found them pretty okay but not great so I could use suggestions there. Veggie bacon that doesn't taste like smoke flavored vinyl would be amazing. I've yet to try veggie chicken or vegan cheese (is that even a thing? If so where the hell do I get it?) So suggestions for those are welcome too.

All in all, I'm aware that it won't taste the same as the real deal, but close or at least tasty enough to substitute is good for me. I know meats tend to cause inflammation in the body too and I have enough of that already lol.

Thanks in advance!

My Monster

Tonight is another fight with my monster - depression is again clawing at my heart and my rationality.  It takes everything I have to fight it. Depression takes every bit of common sense, of reason, of logic, of hope and optimism and stamps it out as if none of it had ever existed, and it pulls me down into a deep, dark pit of pain, despair and hopelessness. Sometimes it overwhelms me to the point of total apathy and I'm, for a time, thankfully numb to the pain. I say thankfully because, truly, those moments of apathy are a welcome reprieve from the clawing I feel inside my chest like a true, physical pain.

Sometimes I cry, other times tears escape of their own will through no intent of my own while I lie staring at the ceiling or into the dark of my room, and other times my body is wracked with silent sobs that are so intensely violent my back suffers jolts of sharp, stabbing pain like some great beast is trying to wrench its way out of me through those sobs. Why silent? I don't know. I've never really been able to bring myself to make a sound when I cry during heavily depressive phases. I think, if I'm totally honest, it's partly shame. I'm ashamed of the mental pity party I have that elicit the tears. The thoughts I have both at the time and in hindsight seem so stupid and petty and petulant to me when so many are suffering worse that I don't want anyone to overhear my tears and ask me what's wrong, because then I might have to speak them aloud and I don't want them to hear how stupid my brain is being. So I suffer my depression as I suffer my chronic pain - in silence.

I know this is dangerous to do, should I ever start to lose my fight, but I assure you were it ever to reach that point I would speak out. I promise. And perhaps even now I should. But I really do feel utterly stupid for how my brain thinks when I'm like this. I know my mom would never judge me, but she has enough on her plate.

The truth is, a lot of it is just... genuine loneliness. Aside from my immediate family, I have no friends offline. Everyone I know is all over the place, globally. The nearest in Ontario. I can't drive, so it's not like I can go out and find places to go to meet people and do fun things. And I don't live in a major city so Uber is out of the question, not to mention I can't afford it anyway, really.

My entire future is one gigantic question mark, and most days, I just...can't deal with that. I sit here and wonder, almost every night, about what kind of future I'll have. Will I ever get married to a decent man(unlike my emotionally abusive and manipulative ex husband), and if so when and how the hell am I supposed to meet him in the first place? Will I have kids, and if so, how many? I'm turning 31 in December and the ol' oven has a shelf life before the proverbial D20 roll stars getting riskier. Not to mention if I do have kids, what are the odds that they'll have chronic illnesses that I have? Do I even want to have biological kids in that case, even though it's something I've always wanted? Or a that just being selfish as fuck when I'm putting their health at risk and so many kids are out there needing a good home?

Thoughts like those are just a few of many that race through my mind when the monster's on my back. And I can't make it stop. I don't know how. I just have to grin and bear it until it finally lets go and I can breathe again.

I don't know what to do.

About anything.

And that is the most terrifying and haunting thought of them all.

My Chronic Life

I've touched on a lot of topics on this blog, some personal and others just my views on things. I've given glimpses here and there about how my illnesses affect me, but I've never really gotten in depth about it, shy of the times I've had an emotional breakdown.

Those of you that follow my Twitter know I'm gathering information to do a comprehensive post on Ehlers-Danlos Syndrome, and as I'm wanting to make it as informative as possible, it's taking quite a while to do so. In the meantime, I wanted to do another Spoonie post, and thus, I decided to confront the one post I've been afraid to write. The one about my own chronic life.

Why have I been afraid to write it? For several reasons, really. Some silly, some not so. Mainly that I have a constant worry that normies will think my descriptions hyperbole. Given how much genuine ableism is on Twitter, this isn't an unfounded worry. Another worry that I put into the 'not silly' category is other disabled individuals will read it that have more severe symptoms and think myself a whiner, or less severe symptoms and think they are the whiners. I don't write this to be a comparison between myself and other Spoonies out there, but rather just to share my story and my experiences.

A 'silly' category worry is that I'll be writing and think myself a whiner. Which I think we all do at one point in time or another. We think of how many people have it worse and feel we have no right to complain about our lot. But the truth is, we do. Just because someone out there has it worse doesn't mean we don't have it bad, ourselves. Should we be grateful that we don't have it worse than we do? Of course. But that doesn't mean we aren't allowed to feel grief, or sadness, or anger for the hand we've been dealt.

I digress.

My diagnosed illnesses are as follows, and in no particular order: Fibromyalgia, ME/CFS, Hypermobile Type Ehlers-Danlos Syndrome, Hashimoto's Thyroiditis, Osteoarthritis, Degenerative Disc Disease, Chiari Malformation Type I, Irritable Bowel Syndrome, Scoliosis, Chronic Migraine, Chronic Acute Insomnia, Chronic Sinusitis, Tenosynovitis, Synovitis, Chronic Muscle Spasm, Depression, Anxiety (Social and General), Sebhorric Dermatitis, Arrhythmia, Bursitis of the hips

Suspected illnesses/other: Sjogren's Syndrome, Dysautonomia,  history of elevated ANA (hence why I'm on a constant watch for Lupus), undiagnosed issue with knees that causes constant pain and moderate-to-severe swelling, severe loss of lordosis in the neck (my cervical spine is ramrod straight, in layman's terms)

All in all, it's safe to say I have too many acronyms applied to me, lol. I first became chronically ill at the age of 10 after a whiplash injury. Unsurprising as spinal cord trauma often triggers the onset of Fibromyalgia. A following bout of Epstine-Barr Virus when I was 13 only added insult to injury and life rapidly went downhill from there. More than once in my life, I looked like a heroin junkie from the track marks on my arms as doctor after doctor after doctor ran numerous tests trying to find out what was wrong with me. I didn't officially receive my Fibromyalgia diagnosis until I was 18. Eight years after the onset of trademark FMS symptoms. I didn't find out about the Chiari until a few years ago, after neurological symptoms in my hands and arms warranted a cervical MRI. Come to find out after I requested my medical records, the low-lying cerebellar tonsils were noted on a MRI when I was 16. The doctor I was seeing then never told me.

Throughout my life, I'd heard the same phrase over and over again. 'You're too young.' Whether it was to be in so much pain, or to have so many symptoms, or to be given any sort of pain relief. I was too young. I think many doctors thought I was making it up, until at the age of 14 one doctor discovered my 1:640 ANA. I was sent to an internist who, though it had only been a couple of months, ordered a second one. It was 1:1280 by then. Lupus and other autoimmune panels came back negative. No one had a clue what was wrong.

By the time I finally found the doctor I'm now seeing, the doctor I had been seeing before him completely ignored the fact I'd jumped from 95 lbs at 5'7 (a combination of an overactive thyroid and anorexia) to 185 lbs in only a few months. My current doctor (who I adore and have followed from partnership to partnership loyally and would do to the ends of the earth) ran a thyroid panel. An uptake and scan came next, followed by an ultrasound. I had Hashimoto's Thyroiditis. My free T3 and T4 were insanely low, indicating, obviously, hypothyroidism. He got me started on synthroid and not only did I discover my weight shedding and my insane mood swings vanishing, my energy was coming back.

He's also the one that discovered the Chiari, the Sjogren's, and pretty much everything else aside from the HMEDS, which was diagnosed by a rheumatologist that I'm also currently seeing. (I have to admit, it was pretty fun when she was evaluating me for it when I made her cringe by touching my right thumb to the inside of my right forearm! LOL!)

I've tried to work off and on throughout my life. My longest stint of employment was 3 months. Between my chronic migraines and the widespread pain in my body, I call off too often for anyone to keep me employed. If I had a schedule to know when my body would hit a flare and have me bedridden with pain, or when a migraine would knock me on my ass for anywhere from three to ten days in which I'm in bed with a sleep mask on and earplugs in because the faintest light or tiniest sound is excruciating and has me vomiting into the nearest receptacle, that would be a different story I think. But the Spoonie body comes with no such convenient alert system.

On good days, I'm Supergirl. I can zoom around the house, sweeping floors, vacuuming rugs, doing laundry, dusting surfaces, you name it. I'm a one woman cleaning army. But those days are random. Usually instead of good days, I have tolerable days, where I can move around with a moderate level of pain and take care of my own needs, maybe go grocery shopping with my mother, or go to the doctor if I have an appointment that day.

Bad days are spent abed, typically with ice or heat on my knees, neck and head while I watch a show or putz around on Twitter. Those days, I can't even take care of my own needs, aside from making it the few feet to the bathroom and back. Eating is out the window; even if I could manage to fix myself food, I have no appetite to eat, and the nausea from the level of pain I'm in would ensure that it would immediately come right back up. On bad days, I've even had to cancel doctor appointments. I'm literally too sick to go to the doctor. Thankfully, my doctors understand.

I've seen ableists comment that 'well I know people with disabilities that work, you're just lazy.' They fail to understand that not everyone that is disabled has the same disability and the same restrictions. They don't understand that I have to be careful with how hard I cough, or that sneezing is a gamble, or even rolling over has to be done with care. Why? Because every one of those things risks dislocating a rib, or my shoulder blade. It sounds like hyperbole, but it's completely true. I've subluxed (partially dislocated) ribs rolling over before. In bed. I've fully dislocated ribs during coughing fits with bronchitis.

Having hypermobile EDS means that the most normal, every-day activities risks joint dislocation for me. I can be walking and suddenly my ankle will roll of its own accord. The only thing I can do during those moments is pray that my ankle, knee or hip doesn't dislocate on the way down. Hypermobile EDS means that I'm 'double-jointed.' For some, the extent of the hypermobility is limited to certain joints. But my hypermobility is wide-spread; it extends to every joint in my body. Hypermobility is caused by the tendons and ligaments being too loose to properly support the joints to keep them from bending further than they should, or to keep them from dislocating. Which makes hyperextension very easy, and dislocation hilariously simple to achieve on accident.

It also means I'm doomed to the inevitability of arthritis in every hypermobile joint, in the long run. I already have it in my neck, in my shoulders and in my hips, as well as in my knees to a small degree, though they're not certain as to the full extent of what's going on with my knees. They're an enigma to them as much as myself.

Fibromyalgia is another one that's misrepresented by TV ads and what have you. You'll see ads for Lyrica or something and it's like 'take one pill and life is great again!' Yeah, no, that's not how it works. Let me clear something up straight away here; fibromyalgia is different for every patient. Every single one. It's a syndrome, which means it's a conglomeration of symptoms and the range of severity of these symptoms is variable from patient to patient, and not every patient will have every symptom or even the same symptoms. My experience with fibromyalgia is one of widespread aches and pains, and a constant feeling of having a sunburn all over my body. Sometimes that feeling of being sunburned intensifies into being wrapped in electrified barbed wire. Fibro-fog is a term many people have likely heard; it's a common symptom of fibro, where we deal with a period of mental fog. It can make us forgetful and/or disoriented, and we tend to do some pretty silly things during these times.

My most memorable was as follows -  I went to get a bowl of cold cereal. We keep our cold cereals in a cabinet at the end of the kitchen, and our sugar bowl on a near by rolling cart that our microwave is on. I fetched both of these things as well as the milk from the fridge as it was nearby. I took care of making my bowl of cereal, and put the sugar in the fridge,  and was trying to fit the milk into the microwave and was getting extremely frustrated with it not fitting before I realized what I was doing and laughed at myself. I put the cereal away and returned the milk to the fridge. I only found out that the sugar was in the fridge several hours later when my brother asked why the sugar bowl was in the refrigerator.

Times like these, we can only laugh at ourselves. There's really no other choice, if you don't, you'll likely wind up crying at how ridiculously frustrating it is trying to get your brain to cooperate and perform the most simple of tasks.

All in all, daily pain of varying intensity is my life. There isn't a single second of any day, even good ones, in which I am completely pain free. Pain medications (even narcotics, like the Norco that I am now on) don't eliminate the pain, they just take the edge off, but believe me, that is a wonderful improvement. I use various assistance devices to get through the day, especially if I have to be out and about, whether it's braces on various joints, one or both arm-cuff crutches, or, my nemesis, the motor chairs in stores. (I hate those things...and the judgmental looks people give me when I have to use them.)

I understand that living in constant pain is a hard concept for able-bodied people to understand. Pain is fleeting for you. It's temporary. It goes away when an injury heals, or after a few moments when you stub your toe, or when you take Tylenol for your headache. But for most of us, it never, ever goes away completely. Every second of every day, we are in pain somewhere. It never stops. It never goes away. It interferes with our lives in every aspect.

And it leaves us exhausted.

Chronic Fatigue Syndrome is a big one that many of us have, and that truly adds insult to injury. You hear the term Chronic Fatigue Syndrome and you think 'oh, you're just tired.' No. Chronic Fatigue Syndrome, or, as it's now known, myalgic encephalomyelitis, is more than being tired. It's being constantly exhausted and that exhaustion never goes away no matter how much we sleep or rest. It often comes with aches and pains of its own, as well. I have both insomnia and CFS, and it is absolute hell. It's bad enough sleeping and waking up just as exhausted as when I went to sleep. It's worse feeling more and more exhausted because I can't sleep for as long as 72 hours before I finally manage to crash out.

It's been found that people with chronic illness, especially those with chronic fatigue, are functioning in a perpetual state of exhaustion that would be comparable to a normal person not sleeping for three days and then attempting to function normally. This sounds hyperbolic, but, again, it isn't.

Some of us - myself included - get so exhausted or in so much pain that we can't even shower or bathe daily. And if we express this while talking amongst ourselves because we know that we'll find a sympathetic ear in one who can understand, oft times someone else will horn into the conversation with how 'disgusting' it is.

While I feel happy for those of you that can shower daily, or eat daily, or do anything else normal on a daily basis, we can't. Not always. So instead of calling us out on how "lazy" and "disgusting" we are, try imagining living in a body that is constantly at war with and attacking itself. That is constantly exhausted and in agony. And that we do what we can, often seeing to the most important things first, because we know we have to pick and choose what gets done every day. Sometimes, a poor man's bath (washing up with a cloth in the stank zones) is the best we can do because we just don't have the spoons to do more, having used them on more important ventures. Sometimes, we can't even do that. Your judgment is not necessary nor desired. It's just rude and completely lacking in compassion.

The fact is, I am constantly exhausted, I'm constantly in pain, and my body is literally attacking itself with its own immune system. There isn't thing one I can do about any of it. I wish I could. I wish I had a different body. But I don't. I don't know why I have the body I do, with the problems it has. But I do. I make the best out of it, but sometimes, my best is just getting out of bed to go to the bathroom and coming back to take a nap because walking a grand total of 30 feet was so fucking exhausting that I need one. And you know what? I'm getting okay with that.

I've had doctors judge me, I've had strangers judge me, I've had family judge me. I'm not going to be judgmental of myself in a negative manner. Not when I'm in as much pain as I am already. If the best I can do isn't good enough for anyone else? Screw them.