I know I’ve been promising an update blog for ages and haven’t been following through. Sorry about that; my energy levels have been fluctuating and most days laying around binge watching stuff or gaming is about all I have any real desire for.
It’s been a long while since I’ve gone into any detail about what’s been going on with me, I mean I’ll do posts here and there about this appointment or this problem, but nothing really in depth. Part of that was just plain laziness, and part of it was out of a desire to not jinx myself.
Some months ago, I had Supartz (hyaluronnic acid) injection series in both of my knees - one shot a week for three weeks per knee. This has actually greatly improved my issues with my knees, especially considering the rather disastrous results of the corticosteroid injections that were tried prior that made the pain so much worse. My pain level in my knees has dissipated, initially by about 70% during the peak of its efficacy, but now as time has passed and weather has gotten wonky, I’d rate it as about a 50% pain relief which is still nothing to sneeze at by any means! Also, for some reason, this has also stopped my knees from subluxing and dislocating, which is a very, very welcome, if unexpected, result. It’s been a great change in my life to have my knees maxing out at a 6 on my knee pain scale at their absolute worst when prior to the Supartz, they were living there as their normal.
Another significant improvement is my migraines. My pain doctor had, back in August, given me an epidural. I hadn’t had another severe migraine until one last month, and the minor migraines I did get were very short lasting and more than tolerable compared to the 10 days of hell they were. I have also completely weaned off of the Topamax thanks to the epidural. I am going to be having another one soon as a result of the migraine last month - he wants to ensure that I don’t have more significant flares - and I never thought looking forward to needles being stuck in my neck would be a thing.
As of May 20th, I have been a non smoker; I’m more than proud of this particular achievement as it’s an addiction I had had since the age of 16, and really was my only addiction.
(Also, Turk and JD, my gerbils, are both in good health, if now living in separate habitats due to fighting.)
Now for the not-so-great. The degenerative discs in my thoracic spine have been giving me hell, leading to severe muscle spasms in my upper back, at times outright debilitating and nauseating pain, and pain that, oddly enough, radiates into my arms - this is usually a cervical spine problem, not thoracic, but as my pain doc says, my body can’t ever make anything easy. This has thrown the brakes on the next step of rehabilitation for my hips, knees and lumbar spine as I was going to go for aqua therapy, but doc now wants a new MRI of my t-spine as the most recent was 2 or 3 years ago, and we’ll see what we’ll see from there.
I’ve also been having a lot of sinus headaches due to the Sjogren’s causing chronic sinusitis and sinus infections, so that’s always fun, and as a result my eyes have been giving me problems as well - though I’m not 100% certain it’s all due to my sinuses, and will be getting another eye exam soon to ensure all is well with my eyes, as autoimmunes as well as Ehlers-Danlos like to attack organs like the eyes and ears.
My energy level has been in the toilet, and I’ve been doing my best to rectify that, but with little result. I have been eating healthier - well, as much as one can eating microwave meals (healthy choice steamers mostly) - but my appetite is fickle when I’m so tired. I honestly would love to get more raw foods and yummy vegetables into my diet, but prepping and cooking as a spoonie with a fatigue flare is laughable. I’m just glad flash freezing works well and I know that the vegetables in my steamers are nutritious. So I have that going for me.
All in all, the next few months is going to be a long process of diagnostic testing and treatment experimentation, followed by the long road of rehab, but I’m hoping I’ll eventually achieve a more pain-free life; something I wouldn’t have dared hope for not long ago, but my pain doc and the ideas and solutions he has come up with have given me that hope again. It’s kinda nice.
~Jade
Showing posts with label EDS. Show all posts
Showing posts with label EDS. Show all posts
Monday, July 2, 2018
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. :)
Wednesday, November 16, 2016
Finding Ways To Live
I'm very sorry it's been so long since I've posted on this blog - and moreover since I've done a post relating to chronic illness! Everything else seems to have kind of taken over, but I have a secondary blog for that, now, so there's that, ahaha.
There truly is one recurring theme, or would, perhaps, the better term be phrase? That I see amongst my fellow Spoonies, and that often is, 'I just want to find a way to live my life.' And isn't that really the gist of it all? Even for lifers like me, who genuinely have very little to no memories - if ever they had a life before, for those born with their illness(es) - of life before illness, finding ways to live their lives in the face of chronic illness is truly a constant and ongoing struggle. Some illnesses are more obtrusive than others, some are progressive, some aren't, and some people seem to have more and more illnesses just heap onto their heads like mounds of snow as they slide down a hill in an avalanche of 'what the hell just happened?'
Maintaining any sense of normalcy can be hard, or even impossible, on some - if not many or any, for some of us - days, yet I think it's the one thing we all strive for, the one thing we all fight for on this battlefield in the war we wage with our own bodies every second of every day. Sometimes, finding ways to simplify getting around can feel like giving in - using assistance devices, for example, often makes me feel as though I'm "caving in" to the pain and weakness in my knees and hips from the Fibro and EDSM (Elhers-Danlos Syndrome Hypermobile-Type). The days I have to use the little motor scooters in the stores? Even worse.
Lately, accomplishing anything has been the biggest challenge for me, my heart hasn't been cooperating with wanting to do much, and I begin to greatly wonder if I have Postural Orthostatic Tachycardia Syndrome(POTS, for short) as my symptoms alter and alleviate depending on, you guessed it, my position whether sitting, lying down, or standing. I plan on bringing up a tilt-table test with my cardiologist when I see him in December.
Still, in spite of this, I still try to find ways to deal, to stay active, whether it's finding exercises I can do in bed (pull your minds out of the gutter, now, LOL!) on my absolute worst days, or pushing through the pain and fatigue, which in and of themselves are often overwhelming, throwing on ACE bandages and joint braces, and exercising anyway until my heart starts to throw a fit. A body in motion stays in motion and inactivity is the root of many evils with the Spoonie body, in a lot of cases. Sometimes these exercise bursts just wind up being one-woman dance parties to work up a good sweat - it's silly, it's fun, it's good cardio, and usually I throw some weights in my hands and get some upper body strength training in in the process (when I can find the blasted things.)
But there are always, always those days where the physical and mental symptoms combine to kick me onto my ass where I can't seem to will myself to do much but read or binge watch some Netflix. You know what? Those days are okay, too. Because that, too, is a part of finding a way to live with my illness. Those days of listening to my body and mind and giving them what they need are just as important as pushing through everything with my proverbial middle finger in the air to the pain, because our bodies need that downtime, too, far more often than those of able-bodied people.
All in all, we all have to find ways to live with our illnesses, not just survive with them. If you find ways to accomplish tasks, if you find ways to do things you enjoy, if you find ways to laugh and smile throughout the day in spite of your illnesses, you aren't just struggling, you aren't just surviving, you're living, and that is something to be damn proud of.
There truly is one recurring theme, or would, perhaps, the better term be phrase? That I see amongst my fellow Spoonies, and that often is, 'I just want to find a way to live my life.' And isn't that really the gist of it all? Even for lifers like me, who genuinely have very little to no memories - if ever they had a life before, for those born with their illness(es) - of life before illness, finding ways to live their lives in the face of chronic illness is truly a constant and ongoing struggle. Some illnesses are more obtrusive than others, some are progressive, some aren't, and some people seem to have more and more illnesses just heap onto their heads like mounds of snow as they slide down a hill in an avalanche of 'what the hell just happened?'
Maintaining any sense of normalcy can be hard, or even impossible, on some - if not many or any, for some of us - days, yet I think it's the one thing we all strive for, the one thing we all fight for on this battlefield in the war we wage with our own bodies every second of every day. Sometimes, finding ways to simplify getting around can feel like giving in - using assistance devices, for example, often makes me feel as though I'm "caving in" to the pain and weakness in my knees and hips from the Fibro and EDSM (Elhers-Danlos Syndrome Hypermobile-Type). The days I have to use the little motor scooters in the stores? Even worse.
Lately, accomplishing anything has been the biggest challenge for me, my heart hasn't been cooperating with wanting to do much, and I begin to greatly wonder if I have Postural Orthostatic Tachycardia Syndrome(POTS, for short) as my symptoms alter and alleviate depending on, you guessed it, my position whether sitting, lying down, or standing. I plan on bringing up a tilt-table test with my cardiologist when I see him in December.
Still, in spite of this, I still try to find ways to deal, to stay active, whether it's finding exercises I can do in bed (pull your minds out of the gutter, now, LOL!) on my absolute worst days, or pushing through the pain and fatigue, which in and of themselves are often overwhelming, throwing on ACE bandages and joint braces, and exercising anyway until my heart starts to throw a fit. A body in motion stays in motion and inactivity is the root of many evils with the Spoonie body, in a lot of cases. Sometimes these exercise bursts just wind up being one-woman dance parties to work up a good sweat - it's silly, it's fun, it's good cardio, and usually I throw some weights in my hands and get some upper body strength training in in the process (when I can find the blasted things.)
But there are always, always those days where the physical and mental symptoms combine to kick me onto my ass where I can't seem to will myself to do much but read or binge watch some Netflix. You know what? Those days are okay, too. Because that, too, is a part of finding a way to live with my illness. Those days of listening to my body and mind and giving them what they need are just as important as pushing through everything with my proverbial middle finger in the air to the pain, because our bodies need that downtime, too, far more often than those of able-bodied people.
All in all, we all have to find ways to live with our illnesses, not just survive with them. If you find ways to accomplish tasks, if you find ways to do things you enjoy, if you find ways to laugh and smile throughout the day in spite of your illnesses, you aren't just struggling, you aren't just surviving, you're living, and that is something to be damn proud of.
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