ER Drama

My flare reached new levels, and once I realized I couldn’t eat or drink enough to prevent passing out, I went to the ER. Actually, I went to the ER because of that, and some persistent lower left quadrant pain and bleeding. (I also spiked a fever which was present at my doctor’s office, but ran away in time for ER arrival. Thanks.)

The first ER I went to on Tuesday. They treated me like absolute garbage. I was accused of being a drug addict even though I explained my bad veins were the result of my Behcet’s and repeated sticks and infusions. Despite them having my chart, including an admission to their affiliated hospital a little over a year ago, I was repeatedly asked what drugs I inject.

Thank for making me feel worse about myself, and for avoiding the actual reason I’m in your damn ER.

So I wait, and wait, and they put in an IV but don’t flush it…like ever…which for me means it’s borderline useless. I’m in the waiting room, with at least 40 people, and the room is made for at least half that number. People are crying, coughing, the whole plethora of possibilities. For better or worse, I’m in and out of it because I’m just so dizzy. I want IV fluids more than I’ve ever wanted them before in my life. Then, I realize I’m going to faint. I’d been waiting for over two hours at this point, I’ve asked for zofran, but wasn’t given any. I had a partial seizure, and then another, and I realize I need to tell someone, but the triage nurse keeps disappearing into the back leaving all of us sick folks to fend for ourselves (unless you’re mobile which I wasn’t).

I manage to show him the word “epilepsy” on my emergency application on my phone. (During partial seizures I often know what I want to say, but I lose the ability to say it.) He understands me, but then does nothing.

Yes folks, I tell this man via pointing that I’m going to seize, and he just sort of acknowledges me, then walks away. Thanks.

The partial intensifies and now the whole room looks funky, and I’m overcome with this sense of fear I’ve never experienced. Usually I kind of just let go and let my brain and body do what they have to do, there isn’t a point in fighting the inevitable, but this time I really fought it. Perhaps not the best idea. I wake up in the back, and I can’t get nurses and doctors back on track. I get it, I had a seizure, but I don’t remember any of it. I offer to go wait in the waiting room again. I literally was like, “Hey, I know you’re busy, I’m still woozy, but I’m not here for this, so can we just get me back to waiting for my turn?”

I ended up leaving after six hours, with no fluids, no medications other than seizure drugs, and no answers.

Wednesday rolls around and I’m sent to another ER. This time they were much nicer, but things still got shady. My lab work was normal, but per my PCM’s instructions, I got steroids. Beyond grateful! There were some hiccups, namely they were out of small IV bags so they had to push reglan slow through my IV. Between the steroids and the reglan, I got massive jitters. I was told I was being admitted and that I’d be meeting with the rheumatology team at that hospital the following day. Then things got sketchy.

I was going to be sharing a room. Not the end of the world, but not ideal when you’re immune compromised. We get to the room, and I realize sleeping with the TV on means annoying my bunkmate. I told myself I’d use my phone. As I’m trying to process all of this, I realize that the nurses are confused. The other patient is on precautions! She’s coughing in her sleep, on the other side of a flimsy curtain, and the nurses scan’t sort out why someone on reverse precautions (me) would be in a room with a patient on flu precautions (her).

I am not spending the night in the hospital with normal labs, if it means sharing a room with a flu patient!

This kicks off a debate between me and the nurses. Why am I even taking up bed space? They can’t control my nausea adequately in the hospital because there is a limit on nausea drugs in terms of dosages. I metabolize them fast, and end up constantly nauseas an annoyed by it. I’m going to be sharing a room, while vomiting, with someone who has the flu? No thanks.

To be honest a large part of it was just steroid induced panic. Had they shown up and medicated me, I’d have been okay(ish), but it just didn’t make any sense to me. Why spend the night, try and talk to a whole new rheumatology team in the morning, and expose myself to the flu amongst other nosocomial infections?

I haven’t talked to my doctor since leaving AMA. Yes, folks, I left against medical advice..only not really. The only reason I was admitted was because my PCM was worried, but the labs confirmed I didn’t have sepsis (his worry) and the doctor who was in charge of actually admitting me agreed I was fine to go home. His superior didn’t want to take the risk, hence I had to sign out AMA.

Why would they put a reverse precautions patient in with a patient who was contagious enough that nursing staff had to wear masks around her? I know the hospitals are overrun with flu cases, but that doesn’t mean that chronically ill folks should have to forgo proper care. I do wish I could have seen a rheumatology team and perhaps pushed for quicker treatment via steroids and IVIG, but they wouldn’t have been able to approve the IVIG quickly. Also, three days of high dose steroids, in hospital, while sharing a room with someone highly contagious? That is such a bad idea.

The lesson is go to your usual hospital for these things. My doctor had hoped one of the two big centers could have placed my port, but that wasn’t going to happen either, not unless it was a prolonged admission with the start of IVIG included.

That’s been the last few days! I have phlebitis in my left arm from all the sticking, and I’m still sore overall. I have been able to eat fries and tots for some reason, but only in small amounts. Carbonated water and Sonic slushes have definitely been saving me, too. I said a lot of stuff this past week that I regret, most of it due to lack of usual medication, and the addition of emergency ones. I also couldn’t think clearly because of the lack of nutrition. Now I’m stuck in this place where I regret so much of what I said, but I can’t easily take any of it back.

I wish people understood that not everyone with chronic illnesses handles emergent situations the same way, and even people who seem strong on the outside, can fall apart in strenuous circumstances.

I suppose time will tell if friends forgive me and support me still. All in all it was a really rough week, and I’m glad that it’s over. I’m hoping I’ll get some good news next week, and that I find the forgiveness of my friends, too.

ER Drama

Vitamin Infusions, Movie Plans, Poops (Literally Talking About Poops)

So I was able to get my next round of vitamins today, which was good because I was seriously dragging. I went to bed last night at 7pm, was asleep before 8:30, and could have slept longer this morning had my dogs not made it clear that they were ready to get up. Still, I got a solid 12 hours or so. I had planned on seeing a matinee today, Star Wars, but still felt too sluggish to make it. (My infusion was at 11:30, and the movie started at 3:40. I had hoped, well let’s be blunt, that I would need to poop after the infusion. Sadly, I didn’t get that urge, which was something I had gotten the last two times.

Living life chronically constipated, kind of really sucks.

I used to have issues with diarrhea, and I remember always thinking anything had to be better than running to the bathroom all the time. Then I learned how much not being able to go, seriously sucked. Turns out when you’re constipated, but can only form a partial obstruction, you get diarrhea around the backed up stool. You don’t know fun, until you have the pain of severe constipation, with all the added horror of having diarrhea (sometimes even in your pants.)

We haven’t found a good option for handling this, because I’m a walking contraindication to conventional treatments, and a walking example of all things that can cause diarrhea. When someone can drink half a bottle of Miralax, and not go to the bathroom, you know there is a problem. I recognize that moving more would make me go easier, but I cannot move as much as required because I’m so fatigued and nauseas. Lately I’ve decided the gas is worth it, if it gets things moving, and I’ve started eating dairy. Dairy, for whatever reason, seems to aggravate whatever is causing the GI bleeding.

So, do I want to bleed but go, potentially bleed but not go, or not bleed but definitely not go?

Life is fun.

Back to the movie…with my luck I’ll go, but then suddenly get the urge to poop. This isn’t an easy thing to deal with. First, let’s say I do actually have to go. Going in public isn’t easy for me, nor is going after being stopped up. There is also the risk that the urge doesn’t result in actually going, but does cause bleeding. Biggest issue, for me, is that I’d be buying a ticket, and missing some of the movie. This is Star Wars, and I am a nerd. The only reason I haven’t seen it yet was because of how sick I was feeling, and how sick people in general have been. I can’t imagine sitting through an entire movie with a mask on, so I had to wait.

Tonight, at 7 or 10pm. I’m not being hard on myself, though. I fatigue, nausea, or pain, become too much, then I’ll see if I can see it tomorrow. This is an autoimmune disease. My body is attacking itself (or so they theorize anyhow). How I handle it is how I handle it, because my disease is my disease. What works for me, may work for others, but ultimately each of us needs to figure out what our treatment plan looks like.

During chemotherapy I explained to my mother, that chemo patients are all different. Even two people receiving the same drugs, can have different sets of symptoms. I lost my hair, largely because I was severely malnourished prior to chemotherapy, and I had tapered off very high doses of steroids. The combination caused hair loss, including bald patches, ultimately causing me to decide to shave my head. I also had major issues with nausea. This was likely because I had severe nausea prior to chemotherapy, and had begun to eat different foods during chemotherapy. I also was much more susceptible to the drug than we had expected. I ended up with very low red blood cell counts, platelets, white cells, everything. The doctors were floored, and I was given less of the drug during my next infusion. I had been expected to get an increased dose, but that would never need to happen.

So hopefully I wil have more energy, less nausea, and less GI pain. Hopefully I will go see a movie that I have been waiting weeks to see. Hopefully I will be in a relatively empty theater, so I don’t need to wear a mask the entire time. Hopefully the people working won’t give me grief over my hot water bottle, so I can hopefully get abdominal relief, and back pain relief, through the duration of the film.

May 2018 is the year of “hopefully,” and I’m okay with that.

I told myself 2017 would be the year of treatments, and remission. I set myself up for a let down. So, while I’m hopeful that IVIG will provide me with good results, and less side effects, I recognize that nothing is 100% certain. I can have hope, without losing all rational thinking. Hopefully IVIG will work, and hopefully I’ll need less assistive devices. Hopefully I can get back to working. Hopefully I can throw myself into self improvement, and socialization.

Tonight it starts with hopefully seeing a movie. Tomorrow is another day.

Vitamin Infusions, Movie Plans, Poops (Literally Talking About Poops)

Changing Your Expectations and Being Okay with It

I have had to change so many of my expectations over the last few years, and you would think it would get less painful each time…but it doesn’t. When my ex-husband and I separated, it was a relief. It wasn’t a good marriage, despite being a long marriage, and the freedom from the constant verbal and emotional tirades was beyond amazing. My health had momentarily improved, leading me to believe that I would be so much better physically, because I had freed myself emotionally. It was partially true. My C-PTSD symptoms did decrease, to the point where my medications could be removed, but my Behcet’s didn’t get the notice.

Denial was my first mistake. I refused to accept that the symptoms I was having were Behcet’s related. Wasn’t I always uncoordinated? Didn’t I always have stomach issues? Finances were a mess because I’d blown my knee out, so the stress was of course causing me some physical distress. I made so many excuses for so many obvious signs of flaring, that I was eventually sitting in the medical marijuana office, weighing in at 120 pounds, all 5’10” of me. I got my medical license to smoke, and for the first time ever, tried marijuana. At that point I was struggling to keep down water.

My second mistake was over optimism. Let me explain this further. Being optimistic is wonderful. You need to be positive to stay on track and fight your chronic illnesses. Being overly optimistic, though, prevents you from planning realistically. I kept telling myself every treatment change would work. When it didn’t, I just kept pushing forward. I pushed my body to the limit because I was still in denial. I had a boss prior to getting sicker, who was into positive thinking so seriously, that we literally couldn’t express any negative feelings. I clung to the idea even after leaving the job.

The final mistake was combining mistakes one and two, with lying. I lied to my family. I lied to my friends. I told people I was fine, and when they saw me, they were floored by how not fine I was. By the point I was going to NYU, where they would recommend Remicade and if that didn’t work, Cytoxan, I had been hospitalized for over a week, and was barely able to walk with a walker.

Denial, overly optimistic thinking, and lying to yourself and others, is not going to help you.

I still believe there will be a day when my illness doesn’t impact me day to day, because I’ll have treatments and tools at my disposal, but I am still coming to terms with that reality. Some days I will need my wheelchair. I will likely need IVIG regularly, for quite some time, if not indefinitely. Remission is out of the question, but given how aggressive my case has been, it isn’t likely.

And that’s okay.

That may sound like over optimism again, but it isn’t. I will adjust my life as needed, and with time, I will be able to find things that I can enjoy and do with whatever my body is capable of. I don’t know if anyone will ever be able to love me enough to live with me and commit to me, and while the thought of never settling down and actually living with someone hurts, I do know that it’s a possibility. I also know that there are people out there with chronic illnesses who have found partners, so it isn’t impossible. The first step, though, is accepting myself, and my body, for what it is.

My schooling changed. My potential career paths changed. It hurts. I wanted to be a clinical laboratory scientist more than anything, and I may not be able to ever pursue that path because of my ataxia. What I have found, though, is clinical study associate positions, and they’re actually really interesting. To be honest, I should have gotten my MPH (Master’s of Public Health), but I wasn’t as sick when I committed to the forensic program. Ultimately I can still get certificates for clinical study administration, and because of my undergraduate and different graduate degree, I could make a case that I would be an excellent advisor. I’ve literally studied the lab piece of things, and the investigative side of forensics, I am the perfect person to put together official studies that pair the work that is seen, with the behind the scenes work.

I have literally discovered a career I never knew existed, and it’s in demand where I live. I can also do it in a wheelchair, and even handle some administrative tasks from home.

Currently I’m not in a position to work, but I want to be working someday, and this career field gives me hope. Regardless I love the idea. I could also look into PhD programs with my undergraduate and graduate school, because they have agreements with certain degree programs, where they pay for your PhD if you give them 5 years of your time as a professor. I would actually enjoy teaching college students, and the flexibility of the potential online classes is amazing. Even if I had to do in person instruction, the ability to do it in a wheelchair also makes it a viable option.

Mostly it’s about recognizing that I even have options.

You may not be doing what you thought you’d be doing, but very few people in their 30’s are where they thought they’d be in their teens or even early 20’s. The friends I think that have it all, don’t really all have it all. I come from a small town and most of my friends have gotten married and had kids, but there are others like myself, who got married young and then got divorced. I’m glad I didn’t have kids with my ex-husband, because we would never have been able to peacefully coparent. I also wouldn’t be able to focus on getting myself well, if I had children to look after.

I am not where I want to be, but I am still here, and I still have the opportunity to move in a variety of directions. I just need to be open to the options that I have.

Changing Your Expectations and Being Okay with It

Happy Holidays, and Gross Poo Talk

So this year I wasn’t able to fly back to see family, which was definitely a bummer because I haven’t been able to the last two years either. With the illnesses going around, and my general poor health, flying just isn’t an option right now. While my seizure drugs are currently doing a good job, flying is a high stress situation for me. That means I don’t sleep well prior to flying, and I also tend to get nauseas so I don’t eat much either. Anyhow, an amazing friend and his family offered to have me up with them on Christmas day. I ended up staying a couple nights before heading back down to San Diego. It was really amazing, minus my body being a pain in the rear.

Currently the GI issues are the biggest thing. I’ve reached a state of low nutrient intake, and low calorie intake. This has amplified the brain fog I was already dealing with courtesy of the neurological issues. My friend and his family were amazing. They had foods on hand that I could eat, including specially mate potato pancakes without onion so I wouldn’t hurt my stomach eating them. I felt kind of bad because I only ate two of them. I also only had 4 pieces of the bread they’d bought for me, too.

The issue is that I have a partial bowel obstruction. I’ve had them before, and sometimes I can clear them on my own, and other times I have to go into the ER for some really horrible assistance. I have no desire to have the doctors give me high strength laxatives, and enemas. I still have 2 months before GI will see me, and I have to have a bunch of testing between now and then that they want me to complete.

It’s like the doctors don’t realize that there is nothing that needs to be tested for. We know I have gastroparesis based on a test done several years a go. Yes the testing was done poorly, and I was barely over the line, but what does redoing the test prove? Also, the only reason they want the abdominal MRI is because I have stenosis of the celiac artery. I get that it’s super rare to have it the way that I have it, but we also know that this kind of thing can happen with Behcet’s patients. While I go through all of the scheduling and testing, we’re wasting time. I’m struggling, losing weight, and losing focus.

I went from super focused in classes, with high marks, to a struggling student who can’t stay focused, and who is barely getting by.

This will be a short post just because I can’t focus, and may need a nap, haha. I’m still putting my hopes into IVIG. I want it to work, and I want to function again.

Happy Holidays, and Gross Poo Talk

First Round of IV Vitamins, and the Unemployment/Disability Situation

Yesterday, on the 23rd, I got my first infusion of fluids vitamins, and amino acids. It wasn’t pleasant, but mostly because I was still so sick going into the appointment. Basically I’m still having bleeding issues, most likely from my colon, and lower intestines. I’m also having a lot of nausea courtesy of the gastroparesis. I find myself in this horrible situation where, if my stomach and upper intestines empty, they hit the lower intestines where the ulcerations are. So the nausea fades momentarily, only to return as the pain of the food and drink moving through me hits the ulcers. The doctors are fairly sure some of the ulcers were deep, and created blood clot like scabs that are coming off when I feel like I have to go to the bathroom. It’s super fun…

Anyhow, I pulled myself up off the bathroom floor (literally) and went in for the infusion. I was pleasantly surprised when the nurse hit a vein on the first try. (I had forced myself to drink and keep down liquids, though it had left me violently nauseated.) She warned me that the infusion would taste funny, like a Flintstone vitamin. Turns out it tasted exactly like one, but not the fun fruity part…the gross after taste part. This would have been manageable had I brought mints or something, but I hadn’t. It also would have been manageable if I weren’t already trying to avoid throwing up. Then there was the woman who seemed determined to talk to me.

I am pale, obviously in pain, and she just kept talking…

I’m not sure what we talked about. I grunted responses periodically, but spent most of the time checking out her adorable dog. Then something fun happened. About halfway through the bag I thought I was dying. I felt hot flashes, the nausea peaked, and I was pretty convinced I was going to faint or have a seizure. Then, a little while later, it all went away. I told myself it was just the Zofran I had taken prior to the infusion…but I kept feeling less horrendous. Now, don’t get me wrong, the damn thing still tasted awful, but I didn’t feel as awful. 3/4 of the way through the infusion, I was actually sitting up in the chair instead of half curled over. As it finished I had to admit, I felt a lot better, just from the fluids. The vitamins were much needed, but I am sure they haven’t done much just yet. The nurses and nutritionist had all said it would take several regular infusions before I felt a lasting benefit from the vitamins and amino acids. As I’m getting up to leave, talkative lady addresses me and the nurse.

“You look less dead.” Then to the nurse, “Doesn’t she look a lot less dead?”

I mean I’d rather look totally alive, but I’ll take less dead I suppose. My stomach still hasn’t been doing well, but that’s just the nature of the situation. My upper GI doesn’t want to move at all, while the lower GI is a mess of ulcerations and blood. Happy holidays I suppose.

Hopefully I can get an update on my wheelchair after the holiday. I’m bummed that I’ll have to start paying copayments and whatnot, given my insurance year will begin again, but I’m hoping I won’t have to pay it all at once with the wheelchair. That would definitely require me to sell everything I own. I’m also excited to start IVIG. I’m crossing my fingers for some good news regarding my disability as well.

For a long time I was opposed to the idea of disability. I want to work. Not working leaves me unfulfilled. It isn’t even about finances, though I’m definitely struggling financially. Working has always given me a sense of pride and purpose. Even the smallest job made me feel like I was contributing in some way. Without working I feel sort of useless. I know I couldn’t work the way things are right now. As much as I may want to work, I just don’t know day to day how I’ll feel. Plus there are the medical treatments. We’re talking about IV infusions 2x per week, if insurance will cover it, then IVIG which will be given over a period of two days. From what I’ve read IVIG is done every 4-6 weeks. If it lines up with IV nutrition appointments, I could be spending 4 out of 5 days in medical offices one week per month. I’d still be spending two days per week in medical offices anyhow. Once we’re able, we’ll wean me to an IV per week, but ultimately we can’t go lower than that since I really need the fluids.

This is the thing people don’t seem to grasp about disability, and those of us who are chronically ill. We fight hard to get to a baseline that is somewhat close to that of a healthy person. Most of us won’t ever feel as healthy as a healthy person, but we can fight hard to become functional enough to basically pass as healthy. Getting to that point takes a lot of effort and time though. In my instance we’re talking several IV treatments, a ton of oral medications, and carefully orchestrated drinks and snacks. Even with all of that, I could wake up and feel miserable. If you look at my IV schedule alone, it become a scheduling nightmare. Toss in the fact my body doesn’t operate well in the mornings, and that I could randomly have a few bad days without warning, and you get someone who really doesn’t have the ability to work right now.

I am not defined by my illness, however, I am limited by it. For a long time I lied to myself, and swore that Behcet’s and the things it has caused like gastroparesis and autonomic neuropathy, would never limit me. I was determined to live the life I wanted, despite the symptoms. As I pushed myself, I got sicker and sicker. Then denial kicked in. I told myself that I was in a flare, and that once the flare was over, I could get back to living a normal life. Denial isn’t helpful. I hit a point where I had to acknowledge that some of the things I wanted to do, I couldn’t do, because of my chronic illnesses, and that’s okay.

Yes, you read that right folks, it’s okay to accept that your disease limits you…as long as you don’t let it define the entirety of your being.

I am chronically ill. I may have to use my wheelchair at times. I cannot work. My diet is an absolute wreck, and even when I do follow the doctor’s advice, I can’t always succeed. The ER team knows me. Professors have to allow me extra time should I require it. These are all facts of life for me. I accept it, and I pivot because of it.

Find something else that you love, and know that limitations are not forever, but even the ones that do stick around don’t change who you are as a person. 

Life is what it is, and sometimes we can’t wrap our heads around having to change our plans, but we also can find ourselves trying something new that we hadn’t even thought of before. We find new passions, new paths, and we go with it.

So go with it. 

First Round of IV Vitamins, and the Unemployment/Disability Situation

I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

That is a literal question I asked someone because I couldn’t remember the word “bread”. Brain fog isn’t anything new for me, but the increase in frequency, and severity of the lapses, has started to concern me. My professor thinks I’m slacking because I had things in at the last second, even when it’s something I already had an extension for. I reassured her that I wasn’t procrastinating. For me to actually retain even a few bits of the material, I need to take my time working on the subject matter. If I miss a lecture, which I have, I don’t just play it and write up a generalized summary to meet the requirements. I listen to a few minutes, pause to take notes, then continue on with the lecture.

Notes on a  two hour lecture typically takes me 6-8 hours.

I need those notes for tests, only in this class, test times don’t really allow for you to dig stuff up in notes or on the books. (I take classes online since I can’t make it to campus anymore.) Another reason for taking accurate notes, is that I love the material. It was different in classes I found incredibly boring. It was material I really wouldn’t use again, and I had no interest. In this class I am interested, it’s just also complex, and contains a lot of minute details. If I can’t remember that bread is what you use to make toast, how am I supposed to grasp the ridge counting system and pattern equations you use to fill out a fingerprint card? (Important side note…I had to take a few minutes to remember the word equation. Sometimes I’ll get annoyed and just look up key words I know related to the word I’m forgetting, but this time I’m proud I figured it out eventually.)

My brain and body are screaming at me to just sleep. I’ve gone from embarrassment of needing a wheelchair, to impatience regarding the length of time it will take to get one. I’m still worried I’ll end up single forever, but I also understand that right now the key is staying alive and protecting my brain from my body’s overly active and very confused immune system.

Most of us who are chronically ill, have had someone judge us as lazy, or we’ve been labeled as procrastinators. We’ve seen the eye rolls, or lost friends because we ran late to often, or cancelled plans.

If I have to be somewhere at 6pm, I start getting ready around 3pm, because I know I’ll need breaks. I also go to bed early, and sleep in, the night before.  If I’m sore, I shower more than once, and take baths to get my muscles as relaxed as possible. I longingly will eye my high heeled shoes, before grabbing my sensible flats. Picking an outfit depends on how long the event will be, and how swollen my various body parts are. Since most of my swelling right now is in my lower abdomen, I have to plan for how that looks. Shape wear?  No way. The pain that results from attempting to contain a bulge that is actually my intestines, colon, ulcers, and of course stool, is beyond explanation.

Last night I saw a movie. It was amazing to go out, but the process began the day before. I tried to be cautious about what I ate, as I usually am, but because I’d eaten a bit more than my intestines could handle, I had a very obvious swelling of my lower abdomen. No worries, we can just kind of layer two tops and hope that it isn’t as noticeable. Makeup? Yeah, that’s fun when you’re arms and legs are weak. I need to get a full length mirror so I can sit and do it easier. Right now I have a rigged up way of doing it that allows me to sit in my bathroom sink so I can use the medicine cabinet mirror to do my makeup.

No, I am not joking.

Forget cleaning up any mess that was made while doing my makeup and hair, if I clean it up, I’ll be too tired, and I was already running 15 minutes late. Now the whole trying to get to my friends house. He’s only like a 5-10 minute walk away, and the weather is nice, but I know that the walk would drain me. It used to be something I wouldn’t think twice about. My part of the city has a free ride electric car that goes around, but alas, there were no available drivers. Plan B was a Lyft Line, but the wait was 10+ minutes, and by this point I am so tired, I really need to take some Zofran. Shift to a regular Lyft which costs more, but doesn’t involve a wait.

So I get in the Lyft, and I’m regretting my large purse, but whatever, I can unload things once I get to his place. As much as  I want to see the movie, I’m considering just going back inside and going to bed, and it’s only like 4pm.

This is where things get really important: I didn’t give up.

I relaxed a bit at his place, he got food (I watched him eat it because that’s what I do now haha), and he was nice and got us a Lyft to the movie theater. Usually it would have been a walk, but I wanted to enjoy the movie. The mall had several flights of stairs that I needed to climb to get up to the theater. The elevator on the side we were on was broken. (Of course…) So we go up stairs, stairs I’ve climbed dozens of times. My legs hurt, parts go numb, I’m starting to wonder if I should just sit down, but I don’t want to make a scene. I start moving slower and slower, but eventually we get to the top. I’m in pain, but we’re there. After enjoying the movie, I remind myself that I need to make it back to see Star Wars, but that perhaps I’ll go alone so I can use the stairs or my walker.

After the movie I did a really dumb thing. We were walking around looking for a specific shop, but we couldn’t find it. We walked and walked and eventually we were almost back at his apartment. So he asked if I was cool with just finishing the walk and I said I was.

But I wasn’t.

Today, I am paying a price. Brain fog is extremely intense, the urge to just keep sleeping is preventing me from doing a decent job on my homework. Have you ever worked out really hard, and you have really sore muscles the next day, where even lifting your spoon is painful? That’s where I’m at. I was having muscle and joint pain before, but pushing myself beyond my limits was just plain stupid.

Lesson: regardless of what you think other people with think of you for using assistive devices, or refusing to walk when the distance is considered walkable, listen to your logical brain. 

I could go to bed right now, and it’s only 5:40pm. I have homework to do, so I can’t just sleep. I could take a bath to ease the pain, but eventually I’ll have to get out. Plus the hot water is a dangerous scenario with my autonomic nervous system being such a bastard lately. Plan is to take a lot of homework breaks, think as much as I can about the homework topics, and if I really need to sleep, then I will let my body sleep.

I need to get that stuff, you know, it comes in sliced, in packages, you use it for toast?

Realizing I’m Not Procrastinating…and It’s Okay

So I’ve been trying to do homework for the majority of the last few days. I will get some done, but inevitably fall asleep, or lose focus. Prior to getting really sick, this wasn’t an issue. I could watch complex shows, and catch on quickly, every single time. There was no such thing as me not being able to focus on an assignment. Sure, I’d procrastinate, but when I sat down to actually do the assignment, I’d do the assignment. Today, I sat down to do the assignment, and I simply couldn’t answer more than one question at a time without requiring a break equal to the amount of time I put into answering the question…or even longer.

I’ve had to accept a few things about this whole prospect. The first thing is that I’m under an insane amount of stress, and that stress breeds an inability to focus. Even if you want to focus, and aren’t actively thinking about bills, and you know, dying alone…you’re still stressed somewhere in the back of your head. Oh anxiety and depression, you spiteful little bitches you. The second thing, that is really important to acknowledge, is the sheer amount of medication required to keep me alive. Some of which causes sleepiness, while others make it hard for me to sleep. Even the marijuana I use for nausea can make me lose focus. Of course without it I’d be throwing up, or focused on trying not to throw up, so I guess that is a matter of perspective. Fourth, I’m not eating normally. My GI motility has seriously taken a nose dive, and this makes me bloated, nauseas, and unable to provide myself with proper nutrition. Lastly is just flat out brain fog itself, as a result of the nutrition, but also because of my brain.

I have a neurological condition, and sometimes the most basic activities require more energy for me, than they would for the average human. My brain itself is also not running on all cylinders.

When my muscles are fatigued, or weak, I have to really focus on not falling over. When my balance is off, which is always, I have to deal with the same thing. I stopped to really think about my movements the other day, by watching how other people moved, and I was forced to admit that I really do walk differently, hold things differently, even sit differently. A lot of what I have to do, takes more effort, and therefore makes me more  tired. Therefore…my brain is just spent.

Brain fog itself is a problem. They don’t know what causes it, or why, but some of us folks with chronic illnesses, just lose our abilities to focus. It used to be every so often, but lately it’s more often than not. When someone tells me I’ll like a show, I have to say I’ll watch it, but then admit to myself it’ll take a special situation for me to actually watch it. I don’t want to miss things, or not enjoy it, simply because I’m working hard to focus on it. The last time I watched a show I actually enjoyed, I fell asleep during the second episode. People assume that means I’m not interested, but the reality is the opposite. I get so interested that I’m trying harder to focus, which results in my falling asleep, or losing focus. Literally can’t win!

So, now that this is done, I shall go back to trying my best to finish some homework before bed. It’s hard because I used to be the night owl who could write an essay in an evening. I don’t know how to adjust to being the student who can’t stay awake, and has to plan out her coursework meticulously in order to get things done on time.


Realizing I’m Not Procrastinating…and It’s Okay