#i've been chronically ill for like. 7 years now and yet i still try to act as if i'm able bodied and then face the consequences

[horsemeatluvr23]

little sketchbook spread w the last 3 + todays hermit a day doodles !! chronic illness has been kicking my ass this week so these r lower effort than i'd like but,,,,,, practice is practice !!!

[thevirgodoll]

Hi dear, I hope that you are having a beautiful day.

I really want to get your side on this; so I'm depressed and I'm also an overachiver. I've had depression for about 2 years but it has only crossed the boundaries of my head about three months ago when I got rejected from my dream uni and since then my grades have gone downhill and so have both my mental and physical health. I'm lost (because I missed a goal I had been preparing for for almost a decade lmao) but at the same time the I'm getting so close to hitting rock bottom that I'm relived to have a new and healthier beginning.

For the last few years I've dedicated all my time, efforts and headspace to school. It's my senior year yet I barely have friends, non school related job experience, I even lost the ability to sleep at some point. It's been ages since I've bought clothes, I look extra sloppy all the time and I never go out.

I've learnt a lot through this experience but since it's not going my way, I need to keep moving.

Any advice?

Love you and your blog <333

Navigating Depression while in College

This won't be a Doll Diaries for now but I will create one later.

I appreciate you sharing this with me and want to commend you on still trying and even recognizing that something needs to change. I also want to say that something like this isn't your fault and is a completely normal experience. I think a lot of people overlook the mishaps that can happen in college if depression isn't handled...because we are all so goal oriented, the ugly side of it gets pushed down and creates a loop of inadequacy.

Rejection is a typical part of your 20s...I'm still learning how to deal with it myself. I don't know everything, I'm still in my 20s as well.

I do believe, though, that everything happens for a reason and that something I wanted that I didn't get isn't a rejection but a redirection to something greater.

I completely relate to being in a rut and having health issues impact your college career. I have multiple chronic illnesses. I also have severe depressive episodes and ADHD. I've also had times where I wasn't able to make the best grades in the world.

What got me together was:

going to see a therapist (my school offers it for free)

learning that meds was a good option for me (it isn't for everyone, but it was for me)

getting diagnosed with mental disorders (helped me understand myself better and give validation to what was going on)

developing a consistent routine in all areas (easier said than done)

learning how to love myself as I am while also knowing things must change and taking accountability

having days where I let myself go and relax instead of being productive 24/7

I'm also in my senior year after losing years my experience due to my health. I had to medically withdraw twice so trust me I get it.

While I've lost time due to my health, I realized I can only control right now. My health problems were a sign to slow down.

Why worry on what could've happened? Thinking anything of that nature is a disservice. Introspection is good, but introspection can become rumination after a while. Learn to have a limit.

I do recommend treating yourself and getting out and doing things. Figure out what style of clothes you want to wear, what hair, etc since that's important to you.

Relearn yourself...ask yourself who you are outside of academia because a lot of people lose themselves in it and then have nowhere to turn once it's beginning to end. Find some professor that you can reach out to and confide in to help you, and if not, there's plenty of resources at your school for your program.

Congratulations on reaching your senior year. Focus on yourself, graduation, and becoming the person you want to be. Everything will happen in its due time, and months from now, you will realize that staying in the moment was all you ever needed to enjoy yourself.

Hope this helps ❤️

[itsnotyouitslyme]

Dear Body, I'm sorry.

BLUF: Your body might not be the reason you are sick and it is suffering just as you are. Try to be kind to your body, don't be like me. While on my road trip I did some introspective thinking. Driving is probably where I do my best thinking honestly. While I was pondering life, how to recover from POTS, how it got this far, etc. I thought about something my POTS specialist said during our appointment last week.

"Your cardiac tests are not for a lack of effort. I can see that your heart is doing everything it can, it gave it everything it had." Since I was 17, there has always been a part of me that resented my body and the cage it represented. That resentment has only grown with each piece of my life that has been taken away from chronic illness. It's not that I sit there and think "I hate my body" 24/7 but those thoughts that sneak in about my body being a prison, my version of hell, or how I feel as though my body is decaying while I'm still inside it...that can't be healthy.

I work in mental health, I know it's not healthy.

How do you stop those thoughts when its your body that's betraying you every time you turn around? First I lost energy, then my mind (cognition and memory encoding), had pain that led to intense fear of never having that pain again. I overcame Fibro through stress management and just listening to my body. But by listening to my body, I had to cancel plans or not go on trips when I was feeling poorly...resentment builds.

Then I get diagnosed with Endometriosis, cool my body is just being a jerk at this point. My endometriosis is almost completely controlled by continuous birth control. Every few weeks or so I get cramps like a period but they don't last long at all.

Then I can't have Gluten...I have Celiac and Hashimoto's. The Hashimoto's is not going well. Apparently, my autoimmune response levels is something that my specialist has never seen before and I am being sent to a research endocrinologist. My thyroid medication gets upped every 8 months or so since I've started to need in 2018.

Now POTS and the stupid elevated heart rate issue (I cannot for the life of me remember what he said it was called). The weight gain I've experienced throughout the past 2.5 years, is unreal. It's demoralizing and I feel completely uncomfortable in my own skin.

HOW does someone not end up resenting their body throughout all of this? I think the quick answer is: you can't.

The longer answer which I did not realize until literally 12/23/22 was that my body didn't do this to me, it was also done to my body.

Everything I am going through, everything my body is dealing with can all be traced back to a singular point: Lyme Disease. Unfortunately, I've had two late stage Lyme Disease incidents...that cannot be good for anyone's body.

It sticks in my head "your heart gave everything it had." This entire time I've harbored this resentment towards my body like a dog with a bone collection, just looking for more reasons to add to my collection. This entire time my body has been doing everything it can for me. It's not my body's fault that ticks found me and that I never had a bulls eye rash to notice I was bitten. It's not my body's fault that my doctor's don't listen to me on my first suggestion. None of this was my body's fault and this entire time I've been placing a large chunk of the blame on it's shoulders.

I read peer reviewed research, I know that Fibromyalgia and POTS don't appear out of no where but yet I just kept on with my resentment. I'm not sure why it took me so long to acknowledge this within myself but I am doing my best to have a few moments of self talk with my body to apologize and acknowledge how hard it has been working while under assault from disease but also from my spirit.

I know a few days of love and appreciation doesn't make up for 16 years of gaslighting my own body but I have to start somewhere.

[northwest-cryptid]

Here's the thing that no one seems to understand...

Living with chronic illness/pain, as a poor person; with medical problems like asthma. I am in permanent stealth mode not even intentionally, but because I live with it. You don't know unless I tell you.

I meet people every day who assume I'm just some able-bodied wealthy person who lives a comfortable life. Why? How?

Well you follow me on the website where I vent a lot so you don't often get to see me as I am, but as someone who lives with a ton of life crippling problems and who knows a ton of people who also do. Let me tell you right now that I don't go through my day to day life suffering. We don't like, limp around going "ooooh ow the pain and suffering; ugh I'm miserable 24/7; oh man it SUUUUCKS"

No, you'll find me in VRChat with my friends just fine, sure I'm absolutely dealing with muscle soreness, general neck pains which give me headaches; I'm likely very hungry and my stomach is in a ton of pain from a poor diet of "whatever we can afford" but I'm not going to like... express that all? We're in the middle of hanging out and we're having a great time, why the fuck would I just be like "oh man the thing I experience every day is STILL happening!"

I literally only do that to ask for aid, or to vent my frustration with the world in general on a very specific website (it's tumblr) but in my day to day life? Nah. I once got an ask that was like "buddy do you do ANYTHING other than complain?!" Which, like dude you're following me on the website where I word vomit; but the truth is...

This week I built a few desks to revamp my living space since I've not really unpacked or moved in despite living here for like 4 years. I cleaned my entire living space, I played a ton of Morrowind with my partner (we are playing through as Benny Biggershoes, descendant of Benny Bigshoes; we're an argonian mage it is very silly,) I also jumped into yet another unity project to do a bit of editing on my VRChat avi/world, got a bit of work done in Blender as well; played a ton of Once Human which I'm trying to figure out how the hell to stream since the game lags like crazy but has been a fun ride over the last few weeks. I'm also getting into MWO with some friends, I found some new bands/artists I'm really enjoying the sound of, my favorite DJ released a new track that was actually really solid and I was absolutely loving that. I've been successfully growing more plants in our garden, I even got a small greenhouse in my office now as well as an air purifier which is helping with my asth- oh fuck I can't mention that, if I mention negativity you'll suddenly forget all the other shit I talked about... uh, I practiced more art and made a new OC that's been fun to figure out how to draw since they're really stylized. I also worked a bit on my website which was fun; I'm enjoying figuring out how to make HTML do a bunch of silly stuff that I want my website to have. We've been cooking a lot more and that's been really fun; let's see what else oh right I also invented a new speedrun which I'm trying to get approved on Speedrun.com so that's cool.

Like, my point here is that yea I'm dealing with chronic pain, asthma, various horrible side effects of being poor (literally need to go to a doctor desperately to get meds but it's expensive and I don't have insurance yet, I've been sick with the same infection for upwards of like 4 months now.) It's all become normal, that doesn't mean it's okay, or that I need to be silent about it; not on my personal blog; not in my personal space. Yes I have a life outside of that all, but yes it is a constant in my life. I'd like to minimize that as much as possible.

It's upsetting to people because I don't LOOK disabled, I don't LOOK like I'm suffering, I don't LOOK like I need money. I don't LOOK like you think people in my position SHOULD.

So the people who would revel in my suffering can't, because I'm not; but those who seek to help me out of my suffering also see that I'm not constantly this pathetic wriggling mess and go "well guess they don't need my help, they seem fine!" Which is the worst because this results in me getting no help and also getting a lot of angry random anon hate about how I'm... uh, not allowed to vent about living with chronic pain, being poor, being disabled; living in a place where I can't afford to get on disability or benefits; and generally live in a shitty situation despite making the most of my life.

People don't like it when I'm happy because they think I'm supposed to be miserable, people don't like it when I'm miserable because that's not entertaining and they think of me as some kind of content creator to consume rather than a human being. Then when I play up a character people say I'm cringe, so like; man you really can't win with people ya know?

Fortunately, I'm winning with myself as best I can, it doesn't mean I wouldn't mind a hand up every now and then; it doesn't mean I don't need help, it doesn't mean I'm not still suffering from chronic illness, asthma (which I literally can't even get an inhaler for because I can't afford it), and a nearly 5 month long (as of now) sinus infection compounding with long covid.

Sure I have very real problems, and I gotta vent that sometimes; but I'm also not going to be some miserable sad sack 24/7. You find me in VRChat and you'd never know I have chronic pain that limits my mobility. You find me in an online game or out at the store or you ask me about unity on a forum and you'll never know I'm struggling to do everything that I do. Because it's normal to me, you don't mention how many times you drink water a day to stay hydrated, I don't mention how many times I need to sit down and rest or take anti-inflammatory meds; or pain killers. It's normal, but that doesn't mean I like it.

[heraldtim]

ADHD

So, as has happened every time I try to start a journal, diary, blog, whatever... I write one or two posts, and then I disappear for a long time. Here I am, back from the disappearing. I am trying quite deliberately to not disappear any more.

My bio-kids both have ADHD-- diagnosed and under treatment. (My step-kids probably have it too.) A couple of months ago, my 16-year-old said, "Dad, I think you have ADHD too," and he rattled off the many, many traits and habits I have which point in that direction. I think he was right.

I already had an appointment for neuro-psych testing planned, and we included ADHD stuff. That was 7 hours of tests which I took across two days this past week, and totally brain-frying. I don't have "official" results yet, but it seems clear that I'm checking all of the right boxes for ADHD. There are habits and traits that I've had since childhoood. There are some things that I see now were coping mechanisms for manifestations of ADHD. I was very outgoing up through kindergarten, but then I specifically became much more introverted, because my father would become angry if I was "acting out" or being too loud, or inappropriate in whatever other way he felt was applicable. I never had the "hyperactive" part of ADHD, because I was madly suppressing it for my own survival.

That was the 1980s. As I am rapidly learning, the medical profession's understanding of ADHD is alarmingly thin. Back then, it was just ADD, which is sort of ironic, because the definiting characteristic was: (mostly) boys who were out-of-control hyperactive. Until the mid 1990s (what??) many physicians still stated publicly that ADHD did not exist and was simply an excuse for poor parenting and bad behavior. Until the 90s? WTF???

Since my son "diagnosed" me, things have been incredibly difficult in ways that are almost comically typical ADHD manifestations. All the stuff with which ADHD patients often struggle over the course of their lives, I seem to have piling up on me in the last few weeks (in addition to recovering from surgery, and trying to homeschool one chronically ill child who is current sleepint 12-16 hours a day and only has half a brain the rest of the time).

Trying to rearrange my office-- rearranging furniture has always made me happy, and it turns out ADHD brains really like those kind of changes (as long as they are forewarned). Where did i put the power cord for this, that, and the other thing when I took them all off the desk to move it? Why won't the damned computer recognize this stupid monitor instead of that one? I should never have started this, the project is too big and I'm too week/crazy/disorganized/full-of-back-pain/depresed/etc. I literally had the old "I can't even do this simple thing. See how useless I am? Everyone would be better off if I were dead" thought this afternoon.

I am going to a massage-- it's a luxury that I'm going to have to quit, or at least cut down on, with a quarter of my income gone. I'm counting down the days until I no longer have to pay alimony. Unfortunately, that will be right about the time that my bio-kids turn 18, finish high school, and head out on their own (if they want to... I mean, I'm not going to kick them out, at least not immediately). So... I'll have the money to do all the things I always wanted to do with them, right when they leave me. That's another train of thought that's leading me to the "better off dead" station.

I really have been very non-depressed over the last few months. My therapist actually suggested we "discharge" me from her care, since I was doing so well. What changed? Why is everything suddenly so hard?

I will write more soon. I know this is just a rambling mess. The purpose is just to get all of the (crazy ADHD) thoughts out of my head and written down so my kids, and hopefully their kids and so on, can maybe find something useful or helpful in it. So maybe when I die, I can leave behind a little something.

[nerdygaymormon]

I'm... scared... of your blog. It goes against a whole lot of what I was taught to believe and follow growing up. But, at the same time, I've been hurt deeply by that... doctrine... and I've only just begun to see and understand the extent of that damage. So... what if this is what my wounded and weeping soul has been searching for... since I can't pick up any "official text" without having a violent physical reaction that is drowning in pain and fear? 1/?

I can't even get near a chapel or temple without reacting. And I can't bring myself to confide in any of my local bishopric or ward members. As a result, I've been suffering alone. I know I need therapy because this is some deep, messed up shit, but I have not been able to find a compassionate professional and I'm not want to continue the search. I've neither the funds nor the energy. 2/?

I'm 34yo born and raised in the Church. Three years ago I experienced something that made me question heavily whether Gd still loved me because I for sure felt damned. And that event caused the floodgates to open, I suppose. I've not been active for years due to chronic illness and being treated like some sort of sub-human because of my disability. I used to maintain a current temple recommend but not anymore. 3/?

I think I'm asexual. And the more and more I think about this, the more and more it explains some aspects of me that I thought were broken. (No desire to date as a teen, no feelings of sexual attraction to anyone, confusion about terms like "infatuation" and "crush", confused and disgusted by sex and the world's obsession with it.) But, at the same time, the more and more I grew to like this term, the worse my feeling of being Rejected by Gd became. 4/? 

But, even before I adopted the term, I began to feel unwanted and damned because of a history of attempted molestation at 5 years old and being taught that I was 'chewed gum' amongst other doctrines that insisted that my every decision and move was responsible for the sexual purity of the male mind. I felt violated in almost everything that I wore that I felt "pretty" in because I was under the belief I was a walking sin. 5/?

I say I'm scared of your blog... yet I read through several posts last night, body shaking and nauseous with fear and guilt. And here I am, unloading in your askbox because I'm so desperate for someone to talk to who won't judge me like I've been judged all my life. The last time I went to church, I ran out of Sacrament in tears, hyperventilating in my car for several minutes. I have not been back since. 6/?

I want to believe that I'm still loved. I want to believe that I'm still wanted. There is a vicious war going in within me, complicated by chronic and mental illness, that I've lost my sensitivity concerning Gd. I can't tell if or when He's talking to me because the constant anxiety, fear and pain drown out the more 'subtle' emotions. And the maladaptive coping mechanisms I've developed likely don't help either... 7/?

Thank you for listening... if you have anything insightful that you think might help, I'd like to read it. (I hope all these messages stayed anonymous...) 8/8

———————————————————————

Wow, the feels. You said so much. I recognize you’re in a hard place. 

—————————  

Don’t worry, you managed to stay anonymous. I know when sending multiple asks it’s to forget to push the anon option.

—————————  

Congrats on figuring out you are asexual (ace). 

I think discovering a lack of something is difficult. There’s all these hints along the way but then once you figure it out, it all makes sense, everything fits.  

Don’t be afraid to change your labels. We use words to describe how we understand ourselves. If the way you understand yourself changes, it’s fine to change your labels. 

—————————  

Having a chronic illness can be difficult, it can take over a life as you organize things around it. Having a disability also can be challenging, especially if it’s one that is visible to others because they often view you as your disability. 

The thing is, you have a personality that wants to be displayed, I can tell that just from these messages you sent me. As people spend time with you and get to know you, they will start seeing you and not your disability. 

—————————  

Things that you described about your feelings and reactions make me believe therapy would help. I’m no mental health professional, but I wonder if you have have the symptoms of PTSD (church caused you trauma) and an anxiety disorder. 

If you have insurance that will cover some sessions, look for a provider that takes your insurance. If you don’t, I know that therapy can be expensive. 

About 2 years ago I needed to see a therapist and I checked at my local university. They had a psychological services clinic where Ph.D. students could gain experience, so the price was reduced, and my therapy was overseen by professors who are up-to-date in their field.  

If you can’t get to therapy now, and if you want to go to church, it helps a lot to have someone you know that can go with you, like a security blanket. It makes it less scary to enter that space. 

If you don’t have someone like that, try contacting the missionaries, explain you haven’t been to church in a while but want to come back. They will be so happy to greet you in the lobby and have you sit with them. And if you want, they will introduce you around to others. 

—————————  

Tbh, I was very surprised at how you describe my blog. I didn’t realize someone would view it the way you did. 

It’s true that I think our church is wrong on LGBTQIA+ topics. This is because of a few things:

1) I feel the spirit let me know that God loves me as I am, a gay man, and that I’m not broken. This is how I’m meant to be. 

2) What we learn about our Heavenly Parents and how they love us and are fair and just, and they treat us the same and view humankind as alike. I can’t believe they would set up a whole group of their children to fail and not have a path to return to them.

3) Jesus stood with those who were on the margins, He spent time lifting others and taught us that real religion is helping others, especially those who are downtrodden and on the margins. 

4) The Church doesn’t show LGBTQIA+ people as a part God’s Plan. The Church doesn’t know what to do with us. And it’s not a good space for queer people so most LGBTQIA+ members leave. This is not good fruit and it’s not what I think God would want, for whole groups of people to not feel welcomed.

I don’t reject the principles of the gospel, I want them to apply to all of us, even me, a gay man, and even you, an asexual woman. We are beautiful, we have a purpose, we deserve to be accepted and have joy. 

I guess that is rebellious and dangerous because it challenges the Church’s narrative about people like you and me. 

I let people in church tell me terrible things and for so long I believed them. I don’t anymore. 

Refusing the shame that church gives us as queer people, that’s radical. Church is supposed to help us be better, not wear us down. 

You can love yourself and be happy as ace. This is part of how God made you, you don’t have to deny this is how you experience life. 

—————————

What are your goals? What kind of person do you want to be? What do you want your life to be like? 

My psychologist used to have me write what I would like my life to be like, and then we made goals to start doing those. 

You are capable of change. 

This is your life. 

God has given you talents. We’re not supposed to hide them under a bushel. Work on developing them and developing yourself. 

You are your own longest investment. Investing in yourself is a gift to the world, it’s how we develop ourselves and increases our capacity to help others.

—————————

I hope you feel I understood what you were trying to say to me. 

I also hope I gave you some things to think about, to ponder, and figure out what feels right to you.

[simplelittlebrowngirljae]

Welcome March!!!

Today I welcome March...

For many, it signals the beginning of spring, which signifies new beginnings and the end of those cold dark days. For some of us, it signals the beginning of allergy season, which can be utterly miserable (I am one of those people).

But March is also an important month to bring awareness to a lot of issues that affect many Americans daily. And yet many don't discuss their issues for fear of judgement and lack of understanding from friends and family.

Of highlight this month, I want to bring awareness to Multiple Sclerosis(MS), Endometriosis, Kidney Disease, Colorectal Cancer and Nutrition.

I have family members close friends who are MS warriors, hence why it is near and dear to my heart. I learned of this illness at a very young age, and realized just how much it can take from you.

Colorectal cancers run in my family, and thanks to modern medicine and the good old colonoscopy, mortality rates have decreased!! However, getting folks to their docs and being honest about symptoms and getting screened regularly is still an issue. We need to do better with this as an entire culture.

Now to me, I was diagnosed with endometriosis and adenomyosis in 2014 and it has changed my life completely. While I've had chronic illness most my entire life, this was the first chronic illness to stop me in my tracks and affect my activities of daily living. Like it stopped me in my tracks and was the first domino to fall and over the years things have just gotten worse.

Which leads me to my need to raise awareness about Kidney disease. I was recently diagnosed with 2-3a Chronic Kidney Disease. This stooped me in my tracks....more than my endometriosis diagnosis or heart disease diagnosis or even autoimmune diseases. I always knew this could happen but just didn't think it would so soon or even so advanced so soon. I just sat in shock and have been for a week now. And the hard part is, at least I feel, is that my doctor is finding me hard to treat because of some of my other issues, we are still trying to figure out what to do. And that scares me because things are steadily progressing until we can find something that won't hurt my other conditions. So just know this is a huge adjustment to me. And to those who think this isn't life altering, know it is. I swell, have fatigue, dizziness, back and side pain, dehydration (like severe dehydration at times), weight gain and loss, heart palpitations and many more symptoms. There are days this can be all consuming when coupled with my other health issues.

Lastly, and most importantly, this month let's be aware of the importance of nutrition!!! Since my early 20s, I have taken a huge interest in nutrition and how it affects our bodies. As a health educator, I have worked with many a population in the food-mood connection, as well as how food can be used as medicine. Since my heart disease diagnosis, I have tried to stay on a Mediterranean diet, and then when I was diagnosed as autoimmune, I introduced the Autoimmune Protocol, or AIP diet. However, after my gastroparesis diagnosis, I had to shift my diet a bit to accommodate the highs and lows of that, but I still recognize how important diet is to the management of chronic illness. So this month, I will try to highlight more recipes to help you all navigate this journey!! Make sure you check out some of my other recipes that I have previously published! I made a smoked turkey sausage and kale pizza last night and must say, it was heavenly!! It was very quick and easy. The crust recipe is previously published (sweet potato pizza crust) and here is the recipe:

Smoked Turkey Sausage and Kale Pizza

Sweet Potato Pizza Crust( see previous recipe https://simplelittlebrowngirljae.tumblr.com/post/189690507530/i-was-diagnosed-with-gastroparesis-a-few-weeks-ago )

1 cup chopped kale, rinsed and dried

1 cup shaved parmesan cheese

1 cup smoked, skinless Turkey sausage

1/2 sliced red onion

2 tbsp Country Crock olive oil plant butter

2 tbsp garlic powder

2 tbsp dried basil

2 tbsp dried oregano

1 tbsp dried parsley

1 tsp pepper

Sprinkle of salt

Directions

Roll out pizza crust and pre bake for about 7 minutes. Take out and set aside.

In a skillet, melt the butter then add the onions and seasonings. Once the onions are a little brown, add about a quarter of your cheese. Stir until it melts. Then spread on crust.

Chop the turkey sausage and spread on crust then add kale on top. Sprinkle with a bit more oregano and garlic powder. Then add remaining cheese. Bake in a 325 oven until kale is crispy and cheese melted.

Let cool and enjoy!!!

I'm excited for this month and look forward to sharing facts, figures, tips, stories, recipes and encouragement. If you haven't already, follow me on my Facebook page, Chronically Strong (@chronicallyillandstrong) for more tips, tricks and comments.