Mindfulness. It is just amazing how big of an impact our thoughts can have on our bodies, on our ability to heal. It’s important that you fill your mind with optimistic or positive, healthy thoughts and your life with all of the things that have always brought you joy, all of your hobbies, and the people who put a smile on your face.
Today’s technologies allow for incredible connections; there is a huge online presence of “spoonies” (as we call ourselves) all over instagram and facebook, both individual pages and group pages! This resource is a HUGE gift to those of us who suffer from severe illnesses that leave us homebound or bed bound with little to no social interaction, but there are cons to this as well.
When you surround yourself with individuals who are sick, and you are sick and have been for a long time, it begins to feel normal. You start to forget what it feels like to be healthy, to be a functional, productive person. When you start to feel that way you know it’s time to reevaluate your perspective, remind yourself of what makes you feel like YOU. Not sick you, not healthy you, but YOU.
Be mindful, know your limits physically and mentally. Will all of these posts from other sick chicks – some of them trending towards competitive over who is worse off, some who seem to thrive off of the attention from being sick – make you focus too much on the sickness? Does life revolve around illness? Because it doesn’t have to; no matter how sick you are, you are more than your illness.
There’s a lot more to mindfulness than this, but it’s a start. I encourage you all to focus not on your illnesses, not on symptoms and treatments and bad doctor visits, not of scary unknowns and dooming diagnoses, but on all of the aspects of your life that were there before illnesses, that exist independently from illness, that bring you simple pleasure, joy, distraction, love. Positivity. Light.
My name is Rachel, I’m 22 years old and live in Virginia. I have an incredible family and two dogs who are the light of my life, and I’m currently living at home on a “break” from college. I’m a recently self discovered artist, I love painting and photography, and I also have a blog. I love working out and swimming both competitively and for fun, my favorite places being Smith Mountain Lake or swimming holes in the rivers, I was born to swim 🙂 I also love driving the back roads with my music and the wind in my hair, I’ve always wanted a convertible. I plan to have a beautiful wedding dress; in fact, if there’s no husband by 35years old, I plan to go try on dresses and wear one because I CAN. I want to travel. I want to live.
I’m Rachel, I’m 22 years old, and I’m a chronic pain patient.
I’ve been sick for six + years, and I have a myriad of chronic illnesses that leave me feeding tube and central line dependent for all “food” and fluids, and with severe nausea and crippling pain every day. There are many days when I struggle just to leave my bed and walk around the small upstairs floor of my home. I sometimes go weeks without leaving the house aside from appointments or my mom driving me to see a sunset or flood or snowy site. I’m often unable to paint or work on my blog due to the pain in my hands and arms becoming overwhelming… I often can’t look at my phone or computer due to my sensory overload and my migraines.
As much as we chronic illness patients love to say that “our illnesses don’t define” us, in reality, symptoms like severe, crippling pain can leave you unable to move, unable to walk, unable to accomplish the simplest of tasks, including self-care/hygiene without the help of a loved one or a caretaker. It causes “painsomnia” aka insomnia caused by severe pain, which in and of itself can be debilitating. The pure exhaustion from being in such high levels of pain can also take over your whole self, body and mind, it can be a scary time if you aren’t able to get relief even just for a couple of hours a day.
I often tell people that I feel like this is a life sentence for the innocent. I feel like sleeping beauty, stuck in her tower waiting for her prince, but I’m stuck in my room and there’s no end in site. I’m the sick girl in the middle of nowhere, but I’m lucky to have parents who work so hard for me.
this is a life sentence for the innocent
Do you have children? Grandchildren? Siblings? Can you imagine watching one of them have a quick yet long term deterioration of their health, and left with daily struggles and little to no relief? Because you’re not doctors or pharmacists so I have trouble understanding why you get to determine who gets these meds and how much we can have….If you aren’t a doctor and you aren’t a patient or someone who has experienced this first hand, what gives you the right?
Last month my pain management doctor and I decided to change my pain management plan after 6 months of consistency, in part to my body’s ability to build up tolerances to medications with lightning speed and in part to the new restrictions on pain medications. With my high, high tolerances and severe, daily chronic pain, it can be extremely difficult to treat, and sadly, it’s about to get harder. Due to the acts of those who abuse drugs, most of whom are not even chronic pain patients, this battle to manage chronic pain and improve quality of life is becoming nearly impossible for those of us on this side of the crisis – those of us who use our medications as prescribed and take them only to help us function on the bad days.
It shouldn’t be so hard to get medications that can improve your quality of life, I struggle so much with that thought, why would they take away these medications when they can help us make life livable?
I hope that the government and the insurance agencies will one day realize how ridiculous this all is, and that they’re stealing whatever potential that I or any other chronic illness patients like me have for relief and a more “normal” lifestyle, taking away the ability to pursue my dreams and my goals without the fear of my pain becoming too much. In this process they’re also taking a doctor’s ability to do their job to the fullest extent right out from under them as they are no longer able to treat patients to the fullest extent or in the way that is best fit for that patient.
There are so many things I want to do in my life. Like any 22 year old, I have goals and dreams and desires, but I also live a life most people my age don’t even know exists, a lifestyle that most can’t even phantom. Sometimes I can’t even imagine what I would do with myself if I were to make it back to society, but I know I’d quickly pick it back up and value every day, every moment, more than any healthy person could.
More on the restriction/ a great article https://www.statnews.com/2018/03/06/cms-rule-limits-opioid-prescriptions/
Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.
Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉
My family asked me if I really had energy for this, and here is what I told them,
“No, I don’t have the energy, but this isn’t about energy. This is about desire and determination.”
Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.
Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”
After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.
I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.
I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂
I think it’s reasonable to say that most individuals over the age of 15 living in the US today have at least heard something about the opiate crisis. Opiates are bad. Narcotics are addictive. They ruin lives and have a high risk for overdose. Opiates are a gateway drug and lead to use of street drugs & illegal self-medicating. (5th-10th grade health class, yah?) That’s what we learn about the opiate crisis, bad bad bad.
Opiates/narcotics can be dangerous…if used incorrectly or illegally. But for people like me, who are living with multiple chronic pain conditions, this opiate crisis is affecting our treatment plans and more importantly, our quality of life & ability to function.
That said, and all dramatics & sarcasm aside, for those of us living with chronic illnesses, the opiate crisis is not the same crisis that you hear about in the news or in a doctor’s office…
My opioid crisis involves trying to make the very limited quantity of pain medication last the whole month, every month….
and then I have to trek back to the doctor to try to advocate for myself and my needs when a change in dosage or medication is needed– I’m really shy/bad at confrontation and in person advocacy so this is a big stress for me.
My opioid crisis is struggling to make each dose last long enough; dealing with a connective tissue condition and genetics that make my body metabolize pain medications too quickly has made treating my pain very hard, high doses of pain meds are hard to get with all of the new FDA laws that are in place due to recreational users and ODs, which of course have nothing to do with my case, but laws are laws and now it’s been made my crisis, your crisis, and that of every addict or legal pain patient who uses these meds.
My opioid crisis involves choosing between being able to function during the day or being able to sleep at night. I’m an artist and a writer, but I can’t paint or write because of the pain in my hands, wrists, and arms. I can’t stand too long, sit still, or lay down without having severe pain in my back and hips. When does the pain end? What is more important, sleep or being productive and (semi)functional during the day?
My crisis means facing the consequences of others’ actions; I don’t abuse drugs nor do I purchase them illegally or without a prescription. I use pain meds because I am unable to really live without having a way to try to manage the pain, no different than how I work to manage my nausea or my migraines, any of my symptoms that can affect my quality of life.
My opioid crisis may not be “normal,” but it’s real. I know so many other girls going through these trials, we are lucky to have each other, but the stress and the guilt and the disappointment from disappointing doctors and failed treatments or lack of access to medications can be overwhelming. There are no words to explain how deeply the system can affect us– and not just because of opiates.
I would love to find something aside from narcotics that would relieve my pain effectively. I want to paint for hours with no shooting pains in my arms, hands, or back, and I want to type without my wrists feeling like they’re black and blue with bruises every time they hit the laptop/keyboard. I want to sleep all night and run a full bag of tube feeds without waking up in too much pain to sit up.
I don’t want to be on narcotics. I have so many goals, and none of them include narcotics, but they also don’t include severe, widespread joint and nerve pain. I also understand why there are strict rules on medications like narcotics. I wouldn’t want them to be easily available to everyone. But that doesn’t mean that those who are truly, legitimately suffering– whether it be acute (post op, injury, car wreck) or chronic (fibromyalgia, arthritis, ehlers danlos syndrome, CRPS, etc.)– should have to continue to suffer when there are actually medications that could make a difference!
Not all of my conditions have treatments. Not all of my symptoms can be managed. So if I find something that helps, and I have doctors saying it makes sense, why does it have to be so damn hard to get a hold of these medications? This system is just mind boggling sometimes.
I want to be a person, not a patient, not a statistic in a research study, just Rachel.
I may be sick, I may be a professional patient, but I’m also a person, but sometimes I feel like less than that when doctors, nurses, or insurance agents treat with disrespect, have biases against me before even seeing me or getting to know me, or neglect my physical or mental health because I am a challenging, serious case on the inside and a young, blonde, smiling 22 year old on the outside; invisible illnesses, especially in young women, often lead to many instances of mistreatment from medical professionals.
I’m almost never late to appointments. I have never missed, skipped, or forgotten an appointment. I email doctors with updates, questions, and reminders so that I can keep things going as efficiently as possible. I fill my meds, do my feeds, and try pretty much every alternative therapy suggested. I treat doctors with respect, no matter what. Not to sound stuck up, but I truly can’t think of much I could do to become a better patient, but honestly, that’s not my job in all of this. I am the patient, and I pay for these doctors to help me.
The idea of “doctors working for me,” is something I had never thought of before about a year ago when someone said it to me after I had a doctor say some hurtful things to me; I don’t work for the doctors, they work for me. They have no right to treat me with any less respect than they expect me to have for them or than they would have for another doctor, a friend, or a family member.
In fact, they should be treating me with great respect even if I’m not being extra outgoing or outwardly friendly. I don’t get paid to be sick. I don’t want to go to the doctor all the time. I’m often traveling hours to see them for just 10-15 minutes and they’re often not even able to help me or offer me anything new, so if I’m upset or not talkative, it’s just out of disappointment and frustration with my situation.
But doctors have chosen to be there, to help people. They choose their specialty, choose where they work, what age they work with, and they get paid very well for what they do. But just because they get paid and because they went through medical school doesn’t mean they are better people or even that they know what’s right.
Having invisible illnesses is hard. Many of these conditions are rare and under researched, doctors in small towns and even doctors who work in highly respected hospitals but aren’t specialized just don’t know these conditions. I’ve been to endless doctors who can’t pronounce the names of my conditions, don’t know what they are or what the symptoms are, or think they know and insist they know but are downright incorrect.
Sadly, a lot of girls with conditions like mine deal with doctors being rude or curt, abrasive, neglectful, biased and judgmental, and even abusive. Whether doctors are just having a bad day or whether they think they can speak to us in hurtful ways just because we are young or pretty, appear healthy, or smile and laugh like “normal” people and aren’t bald or in wheelchairs 100% of the time, I don’t know, but I do know that their actions and words can affect us for a long time.
When we are treated so poorly by people we have put our trust into, it isn’t just upsetting for a moment, it often affects our ability to put our trust into doctors and the medical system in general. Sadly, the only way someone like me can live at all comfortably is by seeing a multitude of doctors and working very hard to find treatments and medications that help minimize symptoms. We’ve put our lives in the hands of these people, we literallycannot go on without them. There is no excuse for them to treat us poorly, but when they do, we lose trust for them and we lose what faith we had in the system.
Doctors can go home and take off their white coats and eat dinner with their families, never having to think again about how that day went or what a patient said or did, but we go home and have to deal with the consequences of appointments for days, weeks, months. We rely on doctors and nurses and insurance agencies not just to be alive, but to have any comfort on a day-to-day basis. It’s not an option whether or not to have doctors or treatments, so if we lose one doctor, we have to work hard to find another one who is as good or better and willing to take on a tough case.
Conditions like mine mean you sometimes have to be both patient and medical expert, which is frustrating and exhausting. I don’t ask my doctors for magical treatments or cures that aren’t out there yet, but I do ask them to treat me with respect and dignity. I’m a person, not just a patient.
Well y’all, I have some great news. About time, right? Let me start by saying that I’m thrilled with this news. It’s incredibly exciting for me as well as for my family, but, I am writing this post and explaining this news to you because although it is wonderful news, and it is what I’ve been waiting for forever, it’s not going to be a walk in the park, piece of cake, cure all for me… it’s a complicated treatment that is not widely used for my condition but nonetheless, my best shot.
A couple of days ago I got the news that my IVIG has finally been approved, and not just for one dose, but for 13 rounds. We’ve waited over a year and seen 3+ specialists in order to make this happen, it’s been a crazy battle to get to this point. On Monday 2/19 I will have my first round!
IVIG is IV immunoglobulin therapy. Essentially it is meant to reboot your immune system and help alleviate or reduce the symptoms of autoimmune or immune conditions. For me, the catch is that I do not have the typical conditions that IVIG is currently used to treat. There are many trials going on with how IVIG can help different conditions, gastroparesis included, but there’s no FDA approval for IVIG as treatment for it yet. That said, this is my only viable option left and because I do have an immunodeficiency, I was finally able to get it approved.
Throughout this process I’ve heard a lot of “slim possibility,” “doubtful,” “statistically…” “honestly…” “be prepared for disappointment…” and all of the other phrases doctors use to tell you they don’t think things will work…
BUT, we heard someone say, “it’s worth a shot,” and here we are today, after a long fight, ready to start a new trial.
IVIG is something my family and I decided was our best chance for change. Not all of my doctors agree, but when do they ever? It’s not a treatment widely used for gastroparesis or EDS/Dysautonomia, but because my immune system is involved, there’s a chance my GI system could respond in some way to it. My motility specialist is the one who suggested it as one of my last 3 options for treatment; today, this is the only one of those three options that I have left.
We don’t expect miracles. In fact, I try not to make expectations at all. I hope it works. It would be incredible. But if it doesn’t, I don’t want to be crushed. I’ve been warned by doctor after doctor that it is likely not going to help, so I’ve pretty much got that in my head, but I also have my own hope and positivity in there thinking maybe this is going to be it. I’m not a blind optimist, but I do have hope. It may be hard for some of you to understand that combination of emotions and feelings, but I’m glad it is, because it means you’ve never had to be this sick, and for that I am thankful.
I wrote this update because I know you all care, I know you all want and deserve an update, but I also needed to share with you how this process is going for me. It’s not going to be an easy treatment. It’s not a miracle drug. It’s not a guarantee of success or relief. It’s a treatment that is extremely hard on the body. It has major side effects. It’s a long shot. But it’s my only shot.
IVIG is what I’ve been fighting for and waiting for for a year. I’m so, so relieved that the fight for approval is over, but that doesn’t mean my battle is over, it’s onto the next step now. My family and I have worked so hard for this; hours of phone calls, emails, paper work, doctor visits, denials, tears…what a journey it has been, and now the journey continues. It will take at least 3-4 months to see any results even if this treatment does work. All great things take time.
What I need in this time is for my support team to just be here for me. I will update if there are any improvements or changes, I will update on how the treatment is going and if I am having any side effects or complications, and I will do my best to post regularly so you know whats happening in general. Try not to set expectations, have no disappointment, no pity or sadness if I see no results, no explanations of why it hasn’t worked or reassurances about when it will, just be here for me.
All I need is love. Support. Laughter. Company. Friendship. Exploration. Care. Distraction.
I’m sick and treatment is hard and unpleasant, but I have my ways of coping and I am still a person and sometimes I just need to be Rachel.
**Happy Feeding Tube Awareness Week! This is the first new post, keep your eyes open this week for more posts including but not limited to : Tips for Tubies, a project update, New tubies: Products to start with and where to get them, more on my personal experiences, and a special video! It’s also a great week to buy a painting or send a donation to Newbie Tubie Care Packages, so click here if you’re interested in more information on that :)**
Next month, in March of 2k18, I will celebrate both my 22nd birthday and my 3 year tube-iversary. In March of 2015 I was in school at UVA where I celebrated my 19th birthday on March 8th and then was admitted to the hospital the next week with a blood infection from my central line, which was keeping me nourished and hydrated at the time. On March 24th I was again admitted to the hospital for surgery to place my first long term feeding tube, a GJ tube that went through my stomach and into my intestine where I get my feeds.
Although I’ve had gastroparesis since high school, I never could have imagined that my case would become so severe, leaving me with a feeding tube(s) that could be part of my life indefinitely, taking me out of school, and changing the way I was able to plan for the future. When I first got my tube, my doctors hoped it would only be for a few months or maybe a year if I was really struggling, but we had no idea that my “flare” was about to become my new normal. Instead of having a few months of worsened symptoms like I had in the past, I waited a year… and then another year… and now another year with no relief.
After I finished my first year of college my health was at an all time low and I wasn’t able to go back to school in the fall. My tubes did help my nutrition, but I never tolerated them well enough to get in as much feed as the doctors wanted me to, never enough to gain a lot of weight back. It’s been three years on medical leave now; my classmates, my friends, will graduate in the spring and I won’t have had another day to be there with them.
My parents and I worked so hard to find answers, anything that would bring even partial relief; our original goal was that I could go back to school, but after a year and a half of incredibly severe symptoms and the addition of 3-4 new diagnoses, our goals became things like, “getting Rachel out of the house more… helping get her able to volunteer or babysit sometimes,” and at my worst times, it’s just “getting Rachel more energy and less pain/nausea so she can get out of bed…” From the Fall of 2015 through Summer of 2016, I saw at least three different specialists who are top in the nation on my conditions. Sadly, there are only a few medications that are used for gastroparesis, most of them not even FDA approved, and they can have nasty side effects.
My last (and current) motility specialist is at the Cleveland Clinic and is considered to be one of the top specialists in the world on gastroparesis and dysmotility conditions. He did extensive testing to find a root cause of my GP and to try to find a treatment option, but what we found out is that my gastroparesis had gotten so bad that the numbers were matched with only one other girl’s testing as the second worst cases in CC records. I actually met the other girl online and have been able to talk to her and compare notes and, sadly, she’s still struggling in huge ways—she could use your thoughts/prayers.
Because my dysmotility (lack of motion, “motility”) has moved into my intestines and almost stopped my colon’s motion (colonic inertia), my options are very limited. I had one viable treatment option that we were told was a long shot at working, but it’s my best/only shot. We have been working for over a year now to get IVIG (IV immunoglobulin therapy) approved, it has been a long and tedious attempt that has involved 3 doctors and multiple infusion centers, lots of disappointment, and plenty of reality checks. There isn’t a great chance of it working, but it’s essentially my last major treatment option, so it’s what we have to keep fighting for.
Last year around this time, a few months before, I started having a lot of trouble with my GJ tube flipping up into my stomach leaving me unable to do feeds. Because it was happening 2/3 times a month, I was getting malnourished and dehydrated and had lost even more weight—my all time low. It was decided that I needed to have a jtube placed, one that goes straight into your intestine, not through the stomach first, but it took us awhile to make that happen.
It took me almost another year to get that surgery done due to my malnutrition and some complications with doctors and finding a surgeon who would take on my case, but on October 18th I had surgery for my new feeding tubes. There were some complications during surgery as well as in the week post-op, and recovery was long and extremely painful. But, during that time I came up with my plan for my new project, Newbie Tubies, and now that has come to life and is such a wonderful part of my life.
My first mini- art show; this is both a pain distraction therapies and my #1 fundraiser for Newbie Tubies.
My first package sent! Now I’ve sent over 20!
I may not have ever been able to imagine my life turning out this way, but I have learned, been inspired, shared my knowledge, and seen things in a new perspective. I couldn’t do it without the support of my family, I’m so, so blessed to have parents who are willing to do anything needed to care for me and help me be comfortable.
Being a tubie is just a part of me now, and I’m more than happy to share all I can about that for Feeding Tube Awareness Week. <3
When I was little I could only wear my socks inside out because I couldn’t stand the feeling of the seam rubbing on my toes. We tried buying “seamless” socks, but let me warn you, they still have seams, they’re just really, really thin. I would fuss and cry and refuse to put on tennis shoes because the feeling of that seam rubbing on my foot caused me extreme discomfort, if not true pain. Back then, my family thought I was just a crazy kid who hated socks and couldn’t have any bumps in her hair for a ponytail, but none of us had a clue what was really going on.
You may wonder why the heck it matters that I hated socks as a child, but I’m getting to that. “Overstimulation” is a term that most people don’t often think of in reference to adults, but its something that greatly affects me in my every day life. No, I don’t have ADHD and I don’t have autism, but my Dysautonomia functions in the same area of the brain as ADHD and Autism and can affect the same nerves in my frontal lobes that would be affected if I did have ADHD or Autism.
Because I have both Dysautonomia (dysfunction of the autonomic nervous system) AND chronic migraines, plus both chronic joint pain and fibromyalgia, my sensitivities have just kept growing and growing. It started with socks and small sounds that I just could not get over—people chewing loudly, my window fan making the smallest clicking or rattling noises that no one else could pick out, or birds waking me up by cheeping outside of my window, giving me headaches and starting my day out in a funk on beautiful spring mornings. Now, I hear everything, and it echoes in my head making not only my migraine worse, but causing me pain throughout my whole body.
I’ve had headaches for as long as I can remember; in 5th grade I was complaining to my parents and my doctors about painful, daily headaches, but since I was around the time of hitting puberty they figured my hormones were starting to change and it was due to that. It wouldn’t be until about 5 years later that I saw my first neurologist and finally started making some progress towards figuring out exactly why sounds and lights and touch could be so hard for me.
I was diagnosed with Dysautonomia/POTS and chronic migraines. They called me their guinea pig because I was their youngest patient to date and they just couldn’t figure out all of the pieces, but my neurologist helped get me on a good migraine medication that helped minimize symptoms for awhile, until I started building up tolerances and developing new symptoms. It only took about a year to be sent to new specialists at a different hospital, and eventually higher level specialists in a new state, and then even higher level doctors in a specialty clinic over 7 hours away.
Six years later and my migraines are still not managed and my sensitivities to sound, noise, touch, and even smell are more sensitive than ever. When you hear someone say, “migraines are more than just a headache,” it’s no joke. Just my family members eating cereal or soup and having spoons hitting bowls repeatedly is enough to send me into full body pain. Having the TV on and conversations going overwhelms me so much that I end up fully zoning out and having no clue what the person is saying to me. I can’t be in the same room with my own family when there are certain noises or activities and that is extremely upsetting both for me and for them. It’s taken time for them to realize it’s a real, explained symptom for me and it is still hard for me to grip without feeling a lot of guilt and sadness.
Today, my nerve pain and sensitivity keeps me from wearing jewelry on my wrists or neck. On bad days, I can’t stand to have my hair touching my neck or the cord of my heating pad rubbing against my leg in bed. On worse days, I don’t want to be touched or even touch my own skin because my body feels like one giant bruise. I can’t put lotion on, get dressed, take a shower, or do any daily self-care tasks without being in pain on these days.
I carry earplugs and have a noise machine to try to block out the sounds that cause me distress or pain. I hate these sensitivities because they steal so many moments, so many memories from me. They cause my family anxiety and stress and they cause me frustration, pain, guilt.
Overstimulation and hypersensitivity aren’t anything to take lightly or shrug off if someone opens up to you about their struggles with either/both, try to listen and understand and if there’s something you can do to help make that person comfortable, try to do it. Changing something small like how loud your music is or whether you eat with a metal spoon or a plastic spoon doesn’t matter in the big picture, but being able to share that extra moment with a loved one or a friend because of that small effort can mean so much more than you may realize.
It has been way too long since I’ve posted. I’ve been struggling with symptoms affecting both my mind and my body and I just haven’t had the brain power/energy to finish a post! My illness is a physical illness, but it stems from my brain and my autonomic nervous system so I have both neurological and physical symptoms, many of which are “invisible” to anyone who doesn’t know about them.
I’ve written before about how my Dysautonomia causes severe brain fog—this includes problems with word finding and sentence formation, short term memory loss, trouble focusing/short attention span, and a lot of day dreaming/zoning out. Right now my Dysautonomia is flaring because I had a virus and I’m not getting the full 2 liters of IV fluids I am supposed to get because of a back order that is in place due to the hurricanes that took out a major supplier in Puerto Rico.
Not only is this flare causing me to have extreme brain fog, but I’m having other symptoms as well such as falling asleep or losing consciousness while sitting or standing due to lack of blood flow to my brain. This is a common problem for those with NCS (one of the types of Dysautonomia that I have) but it is not only terribly annoying and embarrassing, it’s debilitating and limiting because I can’t drive or plan anything that involves standing or sitting for too long, and it’s hard to be around other people because I can fall asleep mid-sentence or even worse, in the middle of someone else’s sentence! Let’s just say I won’t be going on any first dates any time soon 😉
Because of my flare of Dysautonomia as well as an increase in severity of my migraines, I also struggle with overstimulation or hypersensitivity to sound, noise, touch, and smell. Overstimulation is something that a lot of people would think of in relation to autism or ADD in children, but it’s something I, as an adult, struggle with every day. Any loud or repetitive noises or bright, colorful, or flashing lights can send me into a terrible episode of overstimulation that leaves me in full body pain and spasms as well as with a migraine that doesn’t respond to medication. Some days my skin hurts to the touch like there’s a bruise spread across my whole body. Before my diagnosis my family thought I was just crazy and picky about noises, but now we know my brain really just can’t handle a lot of these noises, lights, etc.
Winter is always a challenge for me because I deal with intense pain flare ups due to the cold, lots of migraines, and my GI system always gets even worse than normal once I hit November/December, this year just seems to be throwing a few curve balls at me with the neurological symptoms being so significant on top of the normal flares.
Luckily I’ve learned how to adapt and work around most of these symptoms so I’ve still enjoyed getting ready for Christmas and our Christmas day was lovely and (relatively) peaceful. It’s so nice having my family home for an extended break—having company and my care team here makes things both easier and much more fun J
I hope to start being able to use my brain a little more so I can update on some more things and also share more about my Newbie Tubies Project and how I’m hoping to get that going by the New Year!
Its really easy for my mind to go towards thinking about how my illnesses have stolen any predictability about my future; how they took me out of school, have forced me to accept that I may never have my “dream” job or may not even be able to work a “real job” at all. For someone who loves to plan and always wanted to know what was next, living in such uncertainty can be daunting. I fear living a life lacking companionship and never getting to fall in love or find my true soul mate, but then I’m reminded that my illnesses have brought to light so much in myself that I never would have discovered if I hadn’t gotten so sick in the first place.
Instead of focusing on the things I likely won’t be able to do, I’ve started to consider all that I CAN do. I’ve discovered so much about myself that I didn’t even know was there; I have new passions and I’ve discovered talents I had no idea were hidden within me until I got sick and I have a new understanding and a new level of empathy both for the people and the world around me.
Ive strengthened relationships with my loved ones and lost many people who weren’t able to stick by me through my trials, I’ve broadened my outlook and see things in such a new and brighter perspective, and I’ve found passions that give my life more meaning than just being the “sick girl,” no matter what my body has in store.
Although I can’t eat, I’ve developed a relationship with food through cooking meals for my family. I love creating new recipes and trying new techniques with home made goods. Some people are shocked by my love for cooking, but it’s something I’ve always loved and now it’s a way for me to “enjoy meals” with my family.
I’ve rekindled my passion for photography and developed a love for painting– this one I don’t think anyone would have expected. I’ve never been the artist of the family, and although I can’t draw anything, I do have an eye for color, and I’ve found some painting techniques that work for me. Because I’ve discovered these passions and because people (not just my parents 😉 ) started buying my paintings, it has given me hope that even if I can’t graduate from college or work as a full time behavioral therapist like I had hoped, maybe there’s something more out there for me.
I’m blessed to have a community here at home as well as through chronic illness support groups online that support me in every way they can. I’ve had so much support from my local community and I’m so so thankful for each and every one of you. I also have a truly amazing family that does everything from help me with medications/treatments, drive me places, and help with any other around the house/medical things I need and they also help me be able to follow my passions and set me up for success. Not everyone in my situation is so lucky.
Chronic illnesses are exhausting and isolating, they take away so many parts of our lives that we use to identify ourselves. If you’re going to survive it with some sanity, you have to make a choice to not let your illness be the only thing that defines your life– it is always part of what defines you, but if you don’t have other distractions and passions, you’ll just about lose your mind.