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.
Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts
Sunday, November 5, 2017
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?"
Thursday, July 20, 2017
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.
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.
Tuesday, December 6, 2016
Spoonie Problems Vol. 1 - Sleep
Sleeping as a Spoonie can be a major problem. I don't need to tell ye Spoonies this, but for the non-Spoonies reading, well, be prepared to be informed, LOL.
There's the times where we're exhausted from depression but cannot sleep due to anxiety gnawing away at us. There's the times where we're battling a flare and are completely worn out, but the pain keeps us awake. So in essence, we desperately need sleep to help reduce the pain, but the pain keeps us awake so we can't sleep to reduce the pain...vicious cycle. When we -do- finally manage to fall asleep, often the sleep is broken by aches and pains waking us throughout the night, or by vivid and unpleasant dreams. Or some combination of the two.
If one has IBS or some other digestive disorder, sleep also becomes problematic because you never know when you'll be making a mad dash for the toilet because of something you ate that was perfectly fine yesterday to eat that your stomach says 'nope, not today!' on.
Then there are those times where you're just awake, for no good reason whatsoever. You're completely physically exhausted in every way possible, even just moving your arm feels like you have a ten pound weight attached to it. But your mind is so wide awake, it's like someone gave the hamster on the wheel in there a boatload of sugar. Your thoughts may or may not be racing, that part can vary, but, you're just. Awake. No matter how hard you try, you can't sleep. You can lie in the dark for hours on end and just be awake, driving yourself crazy because you're so damn bored and frustrated you want to scream and bash your head into a wall. You may be able, eventually, to snag a couple of hours of sleep. Or this may go on for as many as 72 hours or more before you can finally crash out; for myself, I tend to have cycles when these fits occur. I'll not sleep anywhere from 24-48 hours, sleep for anywhere from 6-12 hours, and repeat the process for as long as two weeks before it finally breaks and I can get regular sleep again.
Many chronic illnesses come with sleep disorders; Fibromyalgia, Elhers-Danlos Syndrome, Lupus, Chronic Fatigue Syndrome, and Sjogren's Syndrome all do, just off the top of my head. Somehow they futz with our internal clocks, some people more than others, as not every patient is the same, and in my case, sleep aids do next to nothing to help except turn me into a zombie after the 1-2 hours I sleep.
And truthfully, no matter whether we sleep on a normal schedule or a wonky one, we still tend to wake up drained, as though we barely slept at all. We don't get much restorative sleep when we sleep, so our bodies don't get the same amount of healing time during rest as a normal person, leading to that fatigue when we wake up. The only time I don't wake up feeling exhausted is when I manage to sleep a solid 12-14 hours two or three days in a row. Those times are rare, but they happen, and I wake up feeling actually rested for a change by the second or third day.
Currently I'm sitting here, having slept about 9 hours, feeling like I haven't slept in days. I'm barely holding my eyes open, moving is a feat in and of itself, and the day is far from over. I'm in the middle of a Fibro flare that's been going on for probably 3 months now, and while it's had its brief lulls where it's been more tolerable, the fatigue has been ever-present and absolutely overwhelming. I think it's been brought on by having been doing too much for a while, and extended by getting sick off and on throughout the flare. I'm hoping it'll let up soon, so I can start feeling remotely human again. It'd be a nice change of pace.
I hope you're doing well, Spoonies, and that your bodies are being kind to you; and that you are being kind to yourselves. :)
There's the times where we're exhausted from depression but cannot sleep due to anxiety gnawing away at us. There's the times where we're battling a flare and are completely worn out, but the pain keeps us awake. So in essence, we desperately need sleep to help reduce the pain, but the pain keeps us awake so we can't sleep to reduce the pain...vicious cycle. When we -do- finally manage to fall asleep, often the sleep is broken by aches and pains waking us throughout the night, or by vivid and unpleasant dreams. Or some combination of the two.
If one has IBS or some other digestive disorder, sleep also becomes problematic because you never know when you'll be making a mad dash for the toilet because of something you ate that was perfectly fine yesterday to eat that your stomach says 'nope, not today!' on.
Then there are those times where you're just awake, for no good reason whatsoever. You're completely physically exhausted in every way possible, even just moving your arm feels like you have a ten pound weight attached to it. But your mind is so wide awake, it's like someone gave the hamster on the wheel in there a boatload of sugar. Your thoughts may or may not be racing, that part can vary, but, you're just. Awake. No matter how hard you try, you can't sleep. You can lie in the dark for hours on end and just be awake, driving yourself crazy because you're so damn bored and frustrated you want to scream and bash your head into a wall. You may be able, eventually, to snag a couple of hours of sleep. Or this may go on for as many as 72 hours or more before you can finally crash out; for myself, I tend to have cycles when these fits occur. I'll not sleep anywhere from 24-48 hours, sleep for anywhere from 6-12 hours, and repeat the process for as long as two weeks before it finally breaks and I can get regular sleep again.
Many chronic illnesses come with sleep disorders; Fibromyalgia, Elhers-Danlos Syndrome, Lupus, Chronic Fatigue Syndrome, and Sjogren's Syndrome all do, just off the top of my head. Somehow they futz with our internal clocks, some people more than others, as not every patient is the same, and in my case, sleep aids do next to nothing to help except turn me into a zombie after the 1-2 hours I sleep.
And truthfully, no matter whether we sleep on a normal schedule or a wonky one, we still tend to wake up drained, as though we barely slept at all. We don't get much restorative sleep when we sleep, so our bodies don't get the same amount of healing time during rest as a normal person, leading to that fatigue when we wake up. The only time I don't wake up feeling exhausted is when I manage to sleep a solid 12-14 hours two or three days in a row. Those times are rare, but they happen, and I wake up feeling actually rested for a change by the second or third day.
Currently I'm sitting here, having slept about 9 hours, feeling like I haven't slept in days. I'm barely holding my eyes open, moving is a feat in and of itself, and the day is far from over. I'm in the middle of a Fibro flare that's been going on for probably 3 months now, and while it's had its brief lulls where it's been more tolerable, the fatigue has been ever-present and absolutely overwhelming. I think it's been brought on by having been doing too much for a while, and extended by getting sick off and on throughout the flare. I'm hoping it'll let up soon, so I can start feeling remotely human again. It'd be a nice change of pace.
I hope you're doing well, Spoonies, and that your bodies are being kind to you; and that you are being kind to yourselves. :)
Monday, November 23, 2015
Handicap Placards and Spaces
Handicap Placards and Spaces
Handicap placards. Not all spoonies have them, but many - likely a majority - do. But with that placard, that handy little blue parking space that becomes so crucially important to us especially on harder days, comes a lot of myths and expectations from the able bodied world.
People expect those with handicapped placards to look a certain way, or perhaps walk a certain way. They expect them to be in a wheelchair, or have a cane or crutches, or to use a walker, or perhaps to limp or waddle. They expect them more often than not to be older. So when they're confronted with someone who may be younger and who may do none of these things, they instantly assume that you're using a parent or grandparent's placard illegally.
I've seen links circulating on places like Twitter and Facebook about people that have had notes left on their car or people that have been told off for parking in a handicap spot with their own placard because this person didn't fit that angry person's expectation of a disabled individual.
So, if you're an able-bodied individual reading this post, I urge you to read on with your eyes and mind wide open. Because this is something you really need to understand.
There are many, many people out there with handicap placards that appear perfectly healthy. They don't often use assistance devices, though sometimes they may. They don't always limp, though again, sometimes, they may. From the outside, they may look to be just fine and dandy, perfectly able-bodied, and they may seem like they have absolutely no business having that handicap placard that's hanging off of their mirror.
However, that does not mean they are using someone else's placard. That does not mean that this person is an able-bodied individual. That does not mean that they should park in an abled space. For people such as myself, those extra feet between a disabled and abled space can mean the difference between getting everything on a shopping list and skipping the majority and getting only the bare necessities because of the extra walking. This isn't hyperbole. Those few feet make that much of a difference. We don't park in those spots because we're lazy. We don't park there because it's fun, or because we want attention. We park there because we have to. Because we need to. Because if we don't, the next time we go to that store, our shopping list may wind up being twice as long, or we may have to have to ask a friend or family member to go to the store for us to fetch the items we were too exhausted or in too much pain to get for ourselves. Can you imagine, just for a second, what that's like?
"Hello, Jan? I went to the store earlier today, but I just couldn't manage to finish up my list, would you mind picking up six or seven things for me after you get off of work before you go home to your own family/homework/other long list of responsibilities?"
It's never a good feeling to ask someone who you know is tired, themselves, from a long day at work, who has an evening of housework or familial responsibilities or what have you waiting at home for you, to stop at the store that you were just at to get things you couldn't manage to get. You feel so guilty, you feel like you're imposing, you feel like you're being lazy, and you feel so indebted in ways you know you likely won't get a chance to repay.
It's possible that you may have one or two people that understand what you're going through who would be willing - I say willing there, not necessarily happy, haha - to go that extra mile for you. But for many, that isn't the case. Many spoonies have no choice but to do it all themselves because they are the only people they can count on, because no one else in their circle of friends and in their family gets what they're going through, and nobody understands the fatigue and the pain.
So, in conclusion of that train of thought... those few feet.. can make such an incredible difference in the life of those people. It can make the difference between completing a shopping trip, and feeling like a failure. I know the times I have to call it quits early on a shopping list, I feel like I failed. Like I let my conditions beat me. Logically, I know I shouldn't feel that way, that it's counter-productive. But I do, and I can't help it. I know there are others that feel this way, too.
To those of you out there who are able-bodied and park in handicapped spaces just to be lazy:
Re-read this post. Think it over a minute. Then take a minute to put yourself in the shoes of a spoonie. Think of yourself in a totally exhausted state. I mean ain't-slept-in-days sort of exhausted. Then throw pain in on top of it. Anywhere you please, it's different for everyone. For me, it's my knees, my hips, and my lower back most prominently. Yep, everywhere that sucks the most for walking and standing. My neck and head, too, thanks to my Chiari malformation. So, imagine the tiredness, and then this on top of it:
I have a near constant feeling of aching pressure in the base of my skull that radiates as tension down my neck and into my traps. My back muscles are almost always in knots in spite of being on muscle relaxers, though the lower back is worst for this, and I get random, sharp-shooting pain in my thoracic spine that radiates into my shoulders and arms thanks to degenerative discs, and a firey, electric sort of pain into my behind and down my legs at random called sciatica when my lower back spasms. My hips feel like the sockets of the joints are being ground against with a dull blade every time I take a step, with the occasional stab if I turn funny, and my knees are, no matter how I sit, stand, lay, or walk, in a constant state of aching that never goes away. Prolonged walking and standing makes this aching escalate into a nauseating throbbing, and when I finally sit, it turns into hot pins and needles as the swelling in my knees cuts off circulation from said position change.
This is just on an average day. This isn't even a bad day for me. So I want you to think about that, try to imagine that, and then think about putting someone through that much pain just so you can save yourself a few feet for convenience. For laziness. I save those few feet to save myself from agony, from further exhaustion. I'm not trying to be sanctimonious here, but handicapped spaces are there for the people that NEED them. And we do! There are so, so, SO many people out there worse off than I am! In worse pain, in worse states, that your parking in that spot could potentially even endanger their lives.
So please, able-bodied person, don't park in a handicapped spot, even if you're only going to be a couple of minutes.
Thank you, sincerely, for not parking in a handicap space if you can't legally park there :).
Friday, November 13, 2015
Another Flare or Just Too Much?
Pretty sure I'm hitting a Fibro flare.
The past week or two has been great. I've been getting things done. Cleaning, doing stuff for mom while she's been down the past two months with a pinched nerve in her neck, doing stuff for everyone, kicking ass inside the house, outside of the house, you name it.
The past two days, I've woken up completely exhausted, like I haven't slept at all. Yesterday I had a headache all day for the first time non-cycle related since I reached the top of my topamax titration.
I just can't get moving today. I feel so heavy, like I have weights attached to every part of my body, even my eyelids and face. Even taking a breath is harder than usual. I feel so physically exhausted I don't even have the words to describe it. The pain isn't really there, yet. But if this truly is another flare after my brief remission, I know it will be.
I know I probably overdid it in the two weeks that I was doing so much cleaning and other work. But it was stuff that needed done, and stuff that no one else was physically able to do. Even if it is a flare, though, I can't just stop. With the situation at home like it is, there's too much that needs done that really is depending on me to do it. Mom still has a pretty long road to recovery ahead of her, I think. Dad's war wounds are bothering him more these days. My brother's own disabilities are really limiting his ability to help out around the house. That's three out of four people eliminated.
They do what they can when they can, sometimes they do more than they should, especially dad these days, but thankfully he's listening when we tell him to stop doing something or to take it easy. I kind of have a household riding on my shoulders at the moment, and it's a heavy load to bear, more so with the level of fatigue I'm feeling right now. I know I need to stop and rest. But I really can't, not a lot anyway. There's too much that needs done. I have to push through, I don't have much of a choice.
The only thing that I know to do now is to pray to God that He will give me the strength I need to get through this and help support my family through these rough times. I don't know why He gave me these disabilities and limitations, why He decided I should have these burdens... I was so very angry with Him for so much of my life because of it. But I'm not anymore. I realize that I can help people because of my problems - I can give them advice on what's worked for me and offer suggestions for things that may help. Whatever His plan is for me, I know my disabilities factor into them somehow. I just have to have faith and perseverance to get through the rough patches - and so far, I always have.
The past week or two has been great. I've been getting things done. Cleaning, doing stuff for mom while she's been down the past two months with a pinched nerve in her neck, doing stuff for everyone, kicking ass inside the house, outside of the house, you name it.
The past two days, I've woken up completely exhausted, like I haven't slept at all. Yesterday I had a headache all day for the first time non-cycle related since I reached the top of my topamax titration.
I just can't get moving today. I feel so heavy, like I have weights attached to every part of my body, even my eyelids and face. Even taking a breath is harder than usual. I feel so physically exhausted I don't even have the words to describe it. The pain isn't really there, yet. But if this truly is another flare after my brief remission, I know it will be.
I know I probably overdid it in the two weeks that I was doing so much cleaning and other work. But it was stuff that needed done, and stuff that no one else was physically able to do. Even if it is a flare, though, I can't just stop. With the situation at home like it is, there's too much that needs done that really is depending on me to do it. Mom still has a pretty long road to recovery ahead of her, I think. Dad's war wounds are bothering him more these days. My brother's own disabilities are really limiting his ability to help out around the house. That's three out of four people eliminated.
They do what they can when they can, sometimes they do more than they should, especially dad these days, but thankfully he's listening when we tell him to stop doing something or to take it easy. I kind of have a household riding on my shoulders at the moment, and it's a heavy load to bear, more so with the level of fatigue I'm feeling right now. I know I need to stop and rest. But I really can't, not a lot anyway. There's too much that needs done. I have to push through, I don't have much of a choice.
The only thing that I know to do now is to pray to God that He will give me the strength I need to get through this and help support my family through these rough times. I don't know why He gave me these disabilities and limitations, why He decided I should have these burdens... I was so very angry with Him for so much of my life because of it. But I'm not anymore. I realize that I can help people because of my problems - I can give them advice on what's worked for me and offer suggestions for things that may help. Whatever His plan is for me, I know my disabilities factor into them somehow. I just have to have faith and perseverance to get through the rough patches - and so far, I always have.
Friday, November 6, 2015
Depression: The Roller Coaster Aspect
A lot of people without depression don't realize that for the majority of us, there's an almost bi-polar aspect to it. No, I'm not saying that it IS bi-polar, or that those with depression are bi-polar, nor am I in any way trivializing or marginalizing bi-polar disorder. I was actually misdiagnosed with bi-polar disorder when a combination of birth control pills and undiagnosed/untreated hypothyroidism had my moods swinging so fast not even I could keep up. (I was very nearly committed at one point during an emotional extreme.)
What I mean by this, is how at one moment, you can be just fine, having a good day, you're happy, laughing, the sun is shining, the birds are chirping, you can hear Louis Armstrong singing in the background. That kind of a good day, you know? Then for no reason, and completely out of the blue, all of that disappears, and your mood goes downhill so fast you'd think it was an avalanche.
For me, it feels like there's something alive inside of my chest, clawing and chewing away at every good feeling until it leaves an empty hole there. It isn't numb, at least not all the time - there are moments of apathy. But it's just...a very heavy emptiness. Nothing is interesting, nothing is fun, no matter how much it normally is. Sometimes I cry, most times I don't, because it's really not a feeling that, in and of itself, is inherently sad. It's just... a nothing that weighs as much as an elephant, sitting right there in the middle of my chest, and it more often than not evokes this feeling of intense frustration and anger that tends to cause me to lash out at those around me for the stupidest things, though for the most part I've learned how to control that, and my family has learned that, when I'm going through this sort of mental problem, to keep their heads down so to speak.
Then, just as quickly, that low can disappear for the same non-reason as it appeared and it's right back to Louis Armstrong again. Sometimes it can disappear after just a few minutes, sometimes hours, sometimes days, or weeks...months.
The thing is, depression doesn't just present as sadness. It can present as anger, as frustration, as intense apathy, as ennui... there's so many faces that depression wears, and it can change its face so much and so fast, half the time I'm tempted to call it Jaquen H'ghar.
I've developed a lot of coping mechanisms over the years to help deal with these lows. I do something productive, whether it's knitting or sewing, or I clean if I'm physically up to it. If I'm having a really good day, physically, I work out or do something labor intensive. Today, I went out for about two hours and raked leaves. I got about 3/4 of our yard done. I know that doesn't sound like a lot for two hours work, but we live on nearly a half acre, and we have nine oak trees and a birch, as well as a maple in the side yard that often blows leaves into our front yard. Lots. Of. Leaves. I'll eat chocolate and binge-watch my favorite TV shows (usually Supernatural; watching "my boys" battle literal demons and monsters, and their own figurative demons, helps me with my own). But sometimes, those coping mechanisms just don't cut it.
Today has been one of those days. Raking leaves really did help for a couple of hours... but then I started the slide downhill again. Chocolate and Supernatural didn't help, so now I'm watching Doctor Who. I can't really knit, as I'm making myself a scarf, but I'm almost out of one of the yarns I'm using, and I need to get more before I can really do much more work on it. So as it stands, I'm sitting here with that monster clawing at the inside of my chest again and there's nothing that I can do to fend it off.
I could try working out, but after working so hard outside, I'll likely in a fair bit more pain than my normal level tomorrow, any more physical stress and I risk triggering a Fibro Flare that'll last weeks if not months, and right now is not a good time for me to be out of commission. My family needs me physically capable of picking up slack for various reasons, and I can't - no. I WON'T let them down, no matter what.
So, that being the case, I'm at a loss. I have no idea what to do to help pull myself out of this slump, and it seems all I can do is just wait for it to pass. I hope to God it does so soon. I'm fairly certain my antidepressants need increased, and I'll be making an appointment with my doctor or his NP as soon as I can to see to that. I should also, or perhaps, first, get my thyroid levels checked; low thyroid hormones can trigger worsening depression, too.
So, if anyone reading this has depression and experiences the same thing I'm going through... you aren't alone in this. I go through it, and so do many others. We're in this together, even if we're thousands of miles apart. We're fighting this same giant beast that wants to destroy us. I'll always keep fighting, and I have no intentions of letting my story end with 'I gave up.' Some days that's harder than others, but I'm so incredibly fortunate to have the love and support of my wonderful and amazing family and friends behind me. I took them for granted for a long time, but eight months without them made me realize just how lucky I was to have them, and have them so close. I'll never take for granted having them right here with me, fighting the same fight I am - the fight against the pain, the fight against the inner monsters, and the fight against anyone who dare say our pain, be it mental or physical, isn't real, because it damn sure is.
What I mean by this, is how at one moment, you can be just fine, having a good day, you're happy, laughing, the sun is shining, the birds are chirping, you can hear Louis Armstrong singing in the background. That kind of a good day, you know? Then for no reason, and completely out of the blue, all of that disappears, and your mood goes downhill so fast you'd think it was an avalanche.
For me, it feels like there's something alive inside of my chest, clawing and chewing away at every good feeling until it leaves an empty hole there. It isn't numb, at least not all the time - there are moments of apathy. But it's just...a very heavy emptiness. Nothing is interesting, nothing is fun, no matter how much it normally is. Sometimes I cry, most times I don't, because it's really not a feeling that, in and of itself, is inherently sad. It's just... a nothing that weighs as much as an elephant, sitting right there in the middle of my chest, and it more often than not evokes this feeling of intense frustration and anger that tends to cause me to lash out at those around me for the stupidest things, though for the most part I've learned how to control that, and my family has learned that, when I'm going through this sort of mental problem, to keep their heads down so to speak.
Then, just as quickly, that low can disappear for the same non-reason as it appeared and it's right back to Louis Armstrong again. Sometimes it can disappear after just a few minutes, sometimes hours, sometimes days, or weeks...months.
The thing is, depression doesn't just present as sadness. It can present as anger, as frustration, as intense apathy, as ennui... there's so many faces that depression wears, and it can change its face so much and so fast, half the time I'm tempted to call it Jaquen H'ghar.
I've developed a lot of coping mechanisms over the years to help deal with these lows. I do something productive, whether it's knitting or sewing, or I clean if I'm physically up to it. If I'm having a really good day, physically, I work out or do something labor intensive. Today, I went out for about two hours and raked leaves. I got about 3/4 of our yard done. I know that doesn't sound like a lot for two hours work, but we live on nearly a half acre, and we have nine oak trees and a birch, as well as a maple in the side yard that often blows leaves into our front yard. Lots. Of. Leaves. I'll eat chocolate and binge-watch my favorite TV shows (usually Supernatural; watching "my boys" battle literal demons and monsters, and their own figurative demons, helps me with my own). But sometimes, those coping mechanisms just don't cut it.
Today has been one of those days. Raking leaves really did help for a couple of hours... but then I started the slide downhill again. Chocolate and Supernatural didn't help, so now I'm watching Doctor Who. I can't really knit, as I'm making myself a scarf, but I'm almost out of one of the yarns I'm using, and I need to get more before I can really do much more work on it. So as it stands, I'm sitting here with that monster clawing at the inside of my chest again and there's nothing that I can do to fend it off.
I could try working out, but after working so hard outside, I'll likely in a fair bit more pain than my normal level tomorrow, any more physical stress and I risk triggering a Fibro Flare that'll last weeks if not months, and right now is not a good time for me to be out of commission. My family needs me physically capable of picking up slack for various reasons, and I can't - no. I WON'T let them down, no matter what.
So, that being the case, I'm at a loss. I have no idea what to do to help pull myself out of this slump, and it seems all I can do is just wait for it to pass. I hope to God it does so soon. I'm fairly certain my antidepressants need increased, and I'll be making an appointment with my doctor or his NP as soon as I can to see to that. I should also, or perhaps, first, get my thyroid levels checked; low thyroid hormones can trigger worsening depression, too.
So, if anyone reading this has depression and experiences the same thing I'm going through... you aren't alone in this. I go through it, and so do many others. We're in this together, even if we're thousands of miles apart. We're fighting this same giant beast that wants to destroy us. I'll always keep fighting, and I have no intentions of letting my story end with 'I gave up.' Some days that's harder than others, but I'm so incredibly fortunate to have the love and support of my wonderful and amazing family and friends behind me. I took them for granted for a long time, but eight months without them made me realize just how lucky I was to have them, and have them so close. I'll never take for granted having them right here with me, fighting the same fight I am - the fight against the pain, the fight against the inner monsters, and the fight against anyone who dare say our pain, be it mental or physical, isn't real, because it damn sure is.
Thursday, November 5, 2015
The System Has Made Me A Cynic
Sorry it's been so long since I've posted.
I finally, FINALLY, after over a year now since I first filed with the aid of a lawyer.... actually I think it's been over a year since I was denied and subsequently appealed, received a notification from Social Security that I have a hearing date scheduled for January 20th.
While this is, generally speaking, good news, I'm not exactly jumping for joy.
The truth is, I've been living with this horse hockey my body throws at me for 18 years, and in all of that time, every benefit I've ever received from the government - be it local or federal, and really, the only ones I've ever gotten approved on have been local, being foodstamps and, until more recently given the change in laws here, Medicaid - has been fought for tooth and nail. Food stamps weren't as difficult as Medicaid. Getting Medicaid for the first time, I was denied, and had to appeal with assistance from a group that worked through a hospital to help people such as myself.
Now, with the change in laws here, you can't really get Medicaid if you aren't a mother or aren't receiving Social Security benefits.
I've been trying for years now, literally, years, to get Social Security. I've applied and appealed, and applied and appealed again. Every time, I was denied. Every time, they say I'm healthy enough to work. They don't live in this body, they don't live with my brain. How the hell can they know I can work based off of a 10 minute physical exam from a doctor that has no rapport with me, and whatever they decide is worth listening to in medical records, which apparently is nothing at all?
The system here really isn't at all fair. I would honestly love to work. I really would. But it's just not a realistic undertaking. Employers don't want someone who will be erratic in their availability, and who has so many doctor-ordered restrictions.
The appeal hearing will be different in the sense that I will be able to speak for myself, I'll be able to offer my side of the story, they'll have a face to go with all of that paperwork, and they can get more insight other than just what's written down. In spite of that though... I just can't muster any real optimism. I can't.
Those of you reading this that know me well, you know how big of a deal that is. I'm forever the optimist, the positive one, the everything happens for a reason type. But this? I just feel like it's a higher step to stand on before I get knocked down to the bottom of the stairwell again.
You're probably wondering why I even bothered trying if I don't think I'm going to win. The truth is... I'm trying because I have to. Because I don't really have any other choice or any other options available to me at this point in time. I have to keep fighting, even if it's a futile battle, and hope that maybe sometime, somewhere down the line, someone will hear my voice over the din and actually listen and understand.
Who knows, that may even be this judge that I see in January. I doubt it. But, maybe.
The thing is, all of these denials, all of these hoops I've had to jump through for every little scrap the government wants to give me... it's sucked the positivity and optimism out of me when it comes to anything related to things like that. It's just... I'm going 'well, I may as well do it, I've got nothing better to do, right?'
I know that sort of attitude won't help. I know that sort of energy won't help. But I literally cannot help it. I try to have faith that it'll work out, and I pray constantly that it will, but there's only so many times I can get kicked in the teeth before I start putting my hands up before the boot can reach me.
I finally, FINALLY, after over a year now since I first filed with the aid of a lawyer.... actually I think it's been over a year since I was denied and subsequently appealed, received a notification from Social Security that I have a hearing date scheduled for January 20th.
While this is, generally speaking, good news, I'm not exactly jumping for joy.
The truth is, I've been living with this horse hockey my body throws at me for 18 years, and in all of that time, every benefit I've ever received from the government - be it local or federal, and really, the only ones I've ever gotten approved on have been local, being foodstamps and, until more recently given the change in laws here, Medicaid - has been fought for tooth and nail. Food stamps weren't as difficult as Medicaid. Getting Medicaid for the first time, I was denied, and had to appeal with assistance from a group that worked through a hospital to help people such as myself.
Now, with the change in laws here, you can't really get Medicaid if you aren't a mother or aren't receiving Social Security benefits.
I've been trying for years now, literally, years, to get Social Security. I've applied and appealed, and applied and appealed again. Every time, I was denied. Every time, they say I'm healthy enough to work. They don't live in this body, they don't live with my brain. How the hell can they know I can work based off of a 10 minute physical exam from a doctor that has no rapport with me, and whatever they decide is worth listening to in medical records, which apparently is nothing at all?
The system here really isn't at all fair. I would honestly love to work. I really would. But it's just not a realistic undertaking. Employers don't want someone who will be erratic in their availability, and who has so many doctor-ordered restrictions.
The appeal hearing will be different in the sense that I will be able to speak for myself, I'll be able to offer my side of the story, they'll have a face to go with all of that paperwork, and they can get more insight other than just what's written down. In spite of that though... I just can't muster any real optimism. I can't.
Those of you reading this that know me well, you know how big of a deal that is. I'm forever the optimist, the positive one, the everything happens for a reason type. But this? I just feel like it's a higher step to stand on before I get knocked down to the bottom of the stairwell again.
You're probably wondering why I even bothered trying if I don't think I'm going to win. The truth is... I'm trying because I have to. Because I don't really have any other choice or any other options available to me at this point in time. I have to keep fighting, even if it's a futile battle, and hope that maybe sometime, somewhere down the line, someone will hear my voice over the din and actually listen and understand.
Who knows, that may even be this judge that I see in January. I doubt it. But, maybe.
The thing is, all of these denials, all of these hoops I've had to jump through for every little scrap the government wants to give me... it's sucked the positivity and optimism out of me when it comes to anything related to things like that. It's just... I'm going 'well, I may as well do it, I've got nothing better to do, right?'
I know that sort of attitude won't help. I know that sort of energy won't help. But I literally cannot help it. I try to have faith that it'll work out, and I pray constantly that it will, but there's only so many times I can get kicked in the teeth before I start putting my hands up before the boot can reach me.
Monday, August 3, 2015
Growing Up Chronically Ill
I started having chronic pain at the age of ten, thanks to a whiplash injury triggering the onset of Fibromyalgia. Chronic pain became a fact of life for me; needless to say, I kind of grew up pretty quickly because of it. I have no recollection of what it’s like to be a ‘normal kid’ or a ‘normal teen.’
At the age of 7, I was pulled out of public school for home schooling - my immune system was crap; I attended one more day in the first semester of first grade than I was out sick, if that gives you an idea. So, I had very little socialization with kids my own age, and at 16 I went to an adult education facility to work towards my diploma as opposed to a GED. Around here, that basically means I was suddenly thrown into a crowd of dropouts and people that were expelled - generally not a good crowd. That went about like you’d expect, and I wound up, after legal trouble, getting my GED.
Now, I told you that story to tell you this one.
I’ve worked two jobs in my whole life. Just two. The longest one lasted about two months, and even that had multiple call-offs which lead to my being fired, the shortest one lasted a week because, hello crap immune system, I got sick, and had to call off multiple days in a row thanks to not being able to talk (it was a call center job.) Boom, fired.
I’m now 28. No job experience, extremely limited in what I can do for work - by doctor’s verification and where applicable, orders, I can’t sit for very long, or stand for very long(15-30 minutes). I can’t lift anything over about 15 pounds, I can’t squat habitually, I can’t kneel, I can’t climb ladders or stairs. All of these things are detrimental to my health. I also can’t look down or look up for extended periods due to what’s called a Chiari Malformation - a part of my skull didn't form right and a small part of my brain, the cerebellar tonsils, have herniated down into my neck. Bending my head down or leaning it up applies pressure and tension in this area and triggers extreme migraines as well as other neurological symptoms.
I have Reynaud’s Syndrome which causes my hands and feet to randomly go ice cold, blue purple and black, or sometimes bloodless white, and be completely numb. As if the Chiari didn't cause me issues with my grip let’s throw that in there too. If I worked a desk job, they’d need extra insurance against people having their eyes put out with the pencils and pens I would accidentally throw when trying to pick them up - although I don’t think there are many insurance policies that cover ‘pencil in the eye.’
I have arthritis in my knees, degenerative disc disease in my thoracic spine, scoliosis, the list goes on.
Take all of this into consideration, and please, if you have ANY ideas… tell me what the hell I’m supposed to do for work. Because according to FSSA and the government? I’m not disabled. There are jobs out there I can do! WHO THE HELL IS GOING TO HIRE SOMEONE WHO IS GOING TO CALL OFF ANYWHERE FROM ONE TO TWELVE TIMES A MONTH?! AT RANDOM?! AFTER BEING FINE THE DAY BEFORE?!
Do you see my issue here? Do you see why I’m so continually pissed at the government for making me fight so hard for disability? The state government for taking my food stamps because I’m not working 30 hours a week?
This has been my life since forever, only it’s been getting progressively worse. I have very little self worth because hey what the hell am I contributing to anything? I can’t even earn my keep, I can’t even contribute the $200 a month from food stamps to cover my food in lieu of rent to my parents!
How in God’s name am I supposed to feel anything but utterly terrible about myself about things that aren't even my fault when my government is telling me I can do things that I can’t do? That I've never been able to do! I can’t even provide the necessities of life to myself! Everything I have my parents have bought for me - my food, my clothes, my phone, my furniture (except my bedroom set that I inherited from my grandmother). There are things that I literally need to try to improve my quality of life that I can’t get because I don’t have the money and neither do they!
I just don’t understand how the government can look at the 2″ and change stack of medical records and tell me I can work, tell me I’m just being lazy, tell me I’m not worth the barely-able-to-be-lived-on monthly stipend they would give me.
I also don’t understand how they don’t understand what that does to me. It makes me question my own sanity, whether I really am just crazy, that maybe all of this pain that I’ve lived with for 18 years is all in my head and I’m just screwed up enough to believe it’s real and if I just snapped out of it everything would be okay. But God I know that’s not true. I do. It just. I can’t. I don’t know what to do anymore. I’m in tears as I’m writing this because it just hurts so much. I don’t know what life is. I don’t.Because I've never had the opportunity to really live it.
And I don’t know how to deal with that, either.
(P.S. I apologize for the somewhat disjointed A-to-Q-to-C nature of this post, my brain is just as much all over the place as this post.)
Wednesday, July 29, 2015
Chiari Migraines & Other Things
I don't know how many of you have a Chiari Malformation - I know something like 1:1000 people have it. I'm fortunate in the fact I have a Type 1 Malformation; the herniation of my cerebellar tonsils isn't as severe as it could be, but I'm also highly symptomatic. I deal with neurological issues in my arms and legs (nothing like throwing an object you went to pick up), extremely painful, light-and-sound sensitive migraines, the works. The migraines can last anywhere from a day to a week or more. Sometimes after a week long migraine I'll get one day of reprieve, and boom, here comes another one.
The irritating thing about Chiari migraines is the fact that there is very little to do about them. I've tried different pillows, different medications, applications of heat or cold, nothing seems to fully treat or prevent them. I'm finally starting to come out of a migraine that was so severe the idea of drilling burr holes in my head to ease the pressure with my dad's power drill was highly appealing. The slightest sound was deafening, the tiniest light excruciating. I couldn't let anything touch my head without intense pain.
Even without having Fibro, without having IBS, CFS, Hypothyroid, HMS(Hypermobility syndrome), depression... the Chiari Malformation would be more than enough to knock me on my ass on the regular. And these government people keep telling me I can work? I can't even shower every day! I can't even EAT every day! Hell, I don't even get to sleep every day no matter how crippling the fatigue and exhaustion is.
I would love to have these people hooked up to one of those simulated pain machines while being kept awake for 3-4 days to simulate the fatigue, mental confusion, brain fog, and exhaustion so they can get an idea of what it's like for us Spoonies to try to do anything. They have so little empathy, and so little sympathy. It isn't entirely their fault I know. To normal people, pain is temporary. But how can they sit there and ignore the doctors saying I can't work? The thick medical files showing my symptoms, their progression, the limitations of my condition..? I don't understand. It's so frustrating, and so disheartening at times. Invisible illnesses are always difficult to bear, because to the rest of the world, we seem fine.
I'll always keep fighting, though - fighting to accomplish things, fighting to be seen and heard, fighting for understanding, fighting my depression - because the day I stop fighting is the day this myriad of acronyms I've collected wins. I'll never let that happen; not as long as I have the will, the ability, and the strength to do anything about it.
The irritating thing about Chiari migraines is the fact that there is very little to do about them. I've tried different pillows, different medications, applications of heat or cold, nothing seems to fully treat or prevent them. I'm finally starting to come out of a migraine that was so severe the idea of drilling burr holes in my head to ease the pressure with my dad's power drill was highly appealing. The slightest sound was deafening, the tiniest light excruciating. I couldn't let anything touch my head without intense pain.
Even without having Fibro, without having IBS, CFS, Hypothyroid, HMS(Hypermobility syndrome), depression... the Chiari Malformation would be more than enough to knock me on my ass on the regular. And these government people keep telling me I can work? I can't even shower every day! I can't even EAT every day! Hell, I don't even get to sleep every day no matter how crippling the fatigue and exhaustion is.
I would love to have these people hooked up to one of those simulated pain machines while being kept awake for 3-4 days to simulate the fatigue, mental confusion, brain fog, and exhaustion so they can get an idea of what it's like for us Spoonies to try to do anything. They have so little empathy, and so little sympathy. It isn't entirely their fault I know. To normal people, pain is temporary. But how can they sit there and ignore the doctors saying I can't work? The thick medical files showing my symptoms, their progression, the limitations of my condition..? I don't understand. It's so frustrating, and so disheartening at times. Invisible illnesses are always difficult to bear, because to the rest of the world, we seem fine.
I'll always keep fighting, though - fighting to accomplish things, fighting to be seen and heard, fighting for understanding, fighting my depression - because the day I stop fighting is the day this myriad of acronyms I've collected wins. I'll never let that happen; not as long as I have the will, the ability, and the strength to do anything about it.
Saturday, July 25, 2015
The Woes of Medication Schedules and Sleep Disorders
I have to wonder if people that don't have conditions that cause sleep disorders, people without chronic illness, doctors, pharmacists, and those who develop medications realize how difficult it is to try to take your medication as directed when your sleep schedule is completely random. For instance; I take my 'AM medications' - including my thyroid medication and a 12 hour BP medication- at 9 in the morning, and have an alarm set for this purpose. I take my 'bedtime' medications at 9 at night - which includes another BP pill and a medication said to 'take at bedtime.'
Now, the thyroid medication is supposed to be taken on an empty stomach, and the 'bedtime' medication I believe is meant to help me get to sleep as well as its intended purpose of alleviating nerve pain. Fantastic.
But the problem is, sometimes I'm just getting to sleep at 9 AM, and just waking up, or having recently woken up, at 9 PM. If I were to take the thyroid pill on an empty stomach in that case, I'd have to go 8 waking hours (as that's generally the recommended time for an 'empty stomach') without a bite of food, and I'm hypoglycemic. Not happening. Then for the bedtime medication, it makes me groggy for several hours after I take it, regardless of caffeine intake.
This makes it so ridiculously frustrating for me. I know the thyroid medication is most effective on an empty stomach but I can't go that long without food, and even though the bedtime medication does make me groggy, I can't get back to sleep - God knows I wish I could.
Sometimes I honestly will lie in bed trying to sleep for 5-6 hours, crying half of the time out of frustration. 'Why can't I just be at least remotely normal?' I'll ask myself, and I honestly have no good answer other than 'You lost the genetic lottery.'
My schedule is so ridiculously erratic. Some nights/days, I'm lucky if I manage 4 hours of sleep after a 24+ hour stretch of being awake, only to repeat the same span of time or longer of being awake. Typically at that point when I can sleep, I'll sleep anywhere from 9 to 16 hours, only to then be awake another 24-48, and sleep 6. You get the picture.
It isn't that I'm not actively trying to sleep during those long stints. It isn't that I haven't tried taking things to help me sleep; I've tried Melatonin, Valerian, sometimes both at once on top of my bedtime medications, which while it does make me ridiculously groggy like I'm in a lucid dream, I can never actually sleep. It's like my brain just makes up its mind to hop around like a rabbit on speed no matter what I throw at it, and it's dragging me along for the ride, the sleep deprivation and exhaustion causing my Fibromyalgia and numerous other conditions to worsen in response, so not only am I bordering on catatonic half of the time, I'm in fairly severe pain on top of it.
I don't know how many of you reading this - if any of you - can relate, but I hope someone that reads this does, so that you know you aren't alone. Sometimes that's the hardest part; that feeling of isolation and loneliness that you're the only one dealing with something. I'm here to say that you aren't, and I hope by sharing my own struggles here, that I've helped you, even a tiny bit. Feel free to share your stories with me in the comments on any of my posts; I'd love to hear them.
Now, the thyroid medication is supposed to be taken on an empty stomach, and the 'bedtime' medication I believe is meant to help me get to sleep as well as its intended purpose of alleviating nerve pain. Fantastic.
But the problem is, sometimes I'm just getting to sleep at 9 AM, and just waking up, or having recently woken up, at 9 PM. If I were to take the thyroid pill on an empty stomach in that case, I'd have to go 8 waking hours (as that's generally the recommended time for an 'empty stomach') without a bite of food, and I'm hypoglycemic. Not happening. Then for the bedtime medication, it makes me groggy for several hours after I take it, regardless of caffeine intake.
This makes it so ridiculously frustrating for me. I know the thyroid medication is most effective on an empty stomach but I can't go that long without food, and even though the bedtime medication does make me groggy, I can't get back to sleep - God knows I wish I could.
Sometimes I honestly will lie in bed trying to sleep for 5-6 hours, crying half of the time out of frustration. 'Why can't I just be at least remotely normal?' I'll ask myself, and I honestly have no good answer other than 'You lost the genetic lottery.'
My schedule is so ridiculously erratic. Some nights/days, I'm lucky if I manage 4 hours of sleep after a 24+ hour stretch of being awake, only to repeat the same span of time or longer of being awake. Typically at that point when I can sleep, I'll sleep anywhere from 9 to 16 hours, only to then be awake another 24-48, and sleep 6. You get the picture.
It isn't that I'm not actively trying to sleep during those long stints. It isn't that I haven't tried taking things to help me sleep; I've tried Melatonin, Valerian, sometimes both at once on top of my bedtime medications, which while it does make me ridiculously groggy like I'm in a lucid dream, I can never actually sleep. It's like my brain just makes up its mind to hop around like a rabbit on speed no matter what I throw at it, and it's dragging me along for the ride, the sleep deprivation and exhaustion causing my Fibromyalgia and numerous other conditions to worsen in response, so not only am I bordering on catatonic half of the time, I'm in fairly severe pain on top of it.
I don't know how many of you reading this - if any of you - can relate, but I hope someone that reads this does, so that you know you aren't alone. Sometimes that's the hardest part; that feeling of isolation and loneliness that you're the only one dealing with something. I'm here to say that you aren't, and I hope by sharing my own struggles here, that I've helped you, even a tiny bit. Feel free to share your stories with me in the comments on any of my posts; I'd love to hear them.
Monday, April 6, 2015
Chronic Pain: Why Normal People Can't Understand
The fact is when you have chronic pain, not only is it, in essence, difficult for you to understand - 'Why is this happening to me? What did I do to deserve or cause this?' - it is quite literally impossible for people who don't have it to completely understand.
To normal people, pain is fleeting, it's an annoyance, a temporary inconvenience, and a signal that they have an injury. To us, the word fleeting isn't even in our vocabulary when it comes to pain, it isn't temporary, it rarely stops even with medication, and there is no injury the pain stems from. It's just there. Always.
This is a hard concept for people to grasp, they can't imagine constantly being in pain, especially for no good reason. It's because of this that they're so inclined to minimize or trivialize our pain.
'It can't be that bad, stop being a cry baby.'
'I would love to not have to work and spend all day in bed!'
'Pain is a part of life, get over it. If you just got out more/exercised more you'd be fine.'
'I know someone who has x and they work. You're just being lazy.'
These are a few of many things that I've had said to me. What they don't understand is how severe the pain of chronic illness victims actually is. Some of us have broken bones and not realized it until the swelling and bruising kicked in because we just assume pain is related to our condition. This isn't an exaggeration; we are so conditioned to our level of pain that broken bones are only middling on our pain chart.
That's another thing, too. The pain chart. You know which one I mean, the one at the doctor that has silly faces that are numbered one through ten, and they use it to gauge your pain. The problem is, my 5 may be someone else's 10. My 10 might be someone else's 'I would rather die than experience that.' This is what makes chronic pain so hard for even doctors to treat and understand. They can't gauge our pain because we are so accustomed to it we don't have the same perspective on it that others do.
It's so frustrating, and so disheartening that people would rather minimize our pain than try to understand. They can't understand, not really. But they can try. Trying means so much, it really does, because it means you see and understand that we're sick and in pain, even if it's invisible, even if we have our mask and armor on protecting us with our smiles from the rest of the world. Sometimes just listening when we're complaining can help.
But all in all, the best thing anyone can do is not trivialize the nightmare that is being trapped in a body like this. They can't imagine our pain, and I wouldn't want them to, but just by doing something like acknowledging that this truly is a nightmare, that we are in a living hell, you're taking that trivializing away.
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