Knowing they care is hard.

It’s hard being on disability. It feels like everyone around me has this piece of their life that I can’t really be a part of. In place of a job, I have pain management, medications, doctors appointments and trying to shower. People lose interest quickly. They can complain about coworkers or a boss each day for weeks and others will commiserate. When I show them my world, though, those days it’s really getting to me, they don’t know how to react. Often, people just don’t react at all.

This aspect of my life, the inability to share my life with people who do not go through the same things, it hurts. It creates a feeling of loneliness, of being forgotten. I know it’s tedious listening to me complain about issues that I’ve had for years or will have the rest of my life. I know it’s not happy. I know you don’t know what questions to ask, and some don’t want to. I know you don’t have words that will make things better so you choose to say nothing.

I don’t know how to fight the thoughts of “No one cares,” or “Why do I even bother?” I tell myself they care. I tell myself I matter. I tell myself a lot of things. It’s hard to shout into the void sometimes. It’s hard to say “My life has meaning and my struggles are important.”

Your struggles ARE important. Your fears are valid. Your emotions are valid. Mine are as well.

I have been having a really hard time lately. Most of my friends are used to my depression and anxiety issues. They are used to me having to disappear to recharge my soul so I have compassion and love to give to others. They are used to me babbling in hypomania and sleeping through emptiness. They are not, however, used to me in pain.

I am learning it is hard for people to switch gears. My general mood is okay but I have a lot of fear surrounding the pain that I have because the problem causing my headaches can also take my vision. I am trying to handle it but sometimes that means talking about it and it’s really hard to talk when it feels like no one is listening. I know my friends love me and care about me. Yours do as well. I know I am not a burden to those that love me, and neither are you. However, at times, I do not feel like these things are true. Tonight is just one of those times.

Please know you are always loved, cared for and are not a burden. It doesn’t matter if your friends know the questions to ask to help you FEEL like they care, the reality is they DO care. I want to say something uplifting like “stay strong” but really, you don’t have to be strong all the time. We will love you and care even if you need to melt down for a while.

~Brutally Honest Eccentric~

Doctors, Pain, Self Advocacy.

I had every intention of talking about the need to be assertive when dealing with doctors for this post. Please note, I did not say aggressive, simply assertive. It doesn’t do you any good to yell at them, they may stop working with you. However, standing your ground when you need help, when you need something changed, this is important. When your medications aren’t working or you’re still in pain when you should not be, when your side effects are not something you can live with… Tell the doctor and make sure you get them to understand you. You NEED to be your own advocate even if others are helping you.

I will go further into that another day. Today I am back stuck with fear and frustration. These headaches, well, I can’t tell what’s bringing them on or what’s getting them to stop. I believe that I am dealing with the pseudotumor again. By the way, it’s called a pseudotumor because your brain is acting as if there is a tumor there but it is simply the pressure of your cerebro-spinal fluid. It’s not a “fake disease.” It just has misleading symptoms.

I am going to try to reschedule my doctor’s appointment. I want to make it earlier, if possible. I will need referrals. I do not want to go back on the medication I was on for the last four and a half years. I need to try to find a different solution and I am sure that the specialist I used to see will only want me back on it.

There are definite side effects from it that affect my life, and there are issues that have come up since starting it that mirror those of my friend who also takes it. She and I were talking last night and comparing diagnoses we’ve received since starting the Diamox. If I have to go back on it, my vision is kind of important to me, so I will find a way to make that sacrifice. However, if there are other options available, I have to try.

We all self-identify as certain things. For some, it’s being a free spirit, or being creative. Some people identify as intellectuals, others as sarcastic comedic relief. One of mine has always been that I am a sexual being (oversharing is another, obviously). I just have been for as long as I can remember. I was writing erotica before my first kiss. Diamox takes away my sex drive. It’s like losing a piece of my soul. Some people will think that’s overreacting, however, consider how you identify. If you’re an avid reader, what if someone took away your ability to read? Or to enjoy it?

So, this is where I am. I need to see doctors. I need to find options. I need to take care of myself and I can, and I will. I will advocate for myself so that I can try to keep that “piece of my soul” and I will stand my ground. Doctors are amazing people, but they are still just human. So, even if the specialists I do see recommend the Diamox, I will be assertive and let them know that I want and need something different if there is any chance to handle it another way.

~Brutally Honest Eccentric~

 

**Disclaimer: I’m not a medical professional. Everyone reacts to medications differently, this is about me, not meant to be medical advice for or against any medications**

“In rare cases…”

I always get those symptoms on medications… “in rare cases.”  They don’t feel so rare. I also seem to win those undesirable lotteries with diagnoses.

I have been getting headaches lately. Searing pain behind my eye, sometimes pushing on the base of my skull. They scare me. For most people, headaches are something you take an OTC medication for and they dull or disappear. For many, migraines are a severe problem, light and sound sensitive, lasting days, the pain barely touched by prescription medication. For me, well, until I can get them identified, these pains are terrifying.

In 2015, I got what we assumed was a migraine. It lasted weeks. After the first few days, I went to the doctor who sent me to the Emergency Room because my blood pressure was skyrocketed – stroke risk levels. After hours and passing out in the hospital with IV fluids, my blood pressure decreased down to “normal” levels. The pain was still there but it wasn’t AS bad, so they sent me home. I made a neurology appointment as directed. The waiting times are horrible. Five, six weeks out – after my second trip to the doctor, who again sent me to the ER – my neurologist finally could see me.

We talked for a short while about the pain I had been experiencing non-stop for about 45 days, and all the pretty things I was and was not seeing. I couldn’t look at a screen, couldn’t see outdoors… I had looked up “auras” weeks earlier because I knew sometimes people with migraines had vision issues. By now, I had every ocular aura I knew of – dancing lights, halos, I couldn’t see through the bright white spots and greyed out circles. The doctor got his little light and magnifier and checked my eyes. He asked if anyone else had and I said no, asking why. He said, staring into the back of my eyes, “There’s nothing back here that resembles human anatomy.” I didn’t know if I should laugh or cry.

He wrote some things down, explained it all to my fiance because I was a mess, and off we went for a third trip to the hospital. This time was different though, my neurologist may have had a strange way of letting me know what was wrong, but he did make sure that we had everything we needed. He even left his cell phone number to call and let him know that I was being taken care of as it would be after hours by the time I made it to the hospital. I owe him more than any copay could cover.

This time I was fully admitted. The diagnosis: Pseudotumor Cerebri (PTC), or Idiopathic Intracranial Hypertension. I had high brain pressure. It took so long to diagnose that I had lost a third of the vision in my left eye and it was months before it returned. In fact, it took so long that we thought it might be permanent. PTC creates swelling of your optic nerve. It caused fluid to enter my eye that shouldn’t as well as some minor hemorrhaging inside.

PTC is a “1 in 50,000 people” kind of thing, so please if you notice symptoms like what I described above, don’t panic but get it checked anyway to be safe. I know sometimes we read something and end up with psychosomatic issues. This isn’t common at all. It is, however, potentially recurring. Especially when one comes off the medication that’s been controlling it. I will be making an appointment with my regular doctor, and then the others if I need to. My headaches don’t feel the same as they did back then but I think my fear is making things worse. Fear sucks.

This is where my mind has been lately, well that and dealing with the fact that my mood stabilizer level is low. When I pull myself together a bit more, we’ll talk about doctors. More specifically, the benefits of being assertive. If you have any questions, please feel free to comment or contact me. About anything really. Eventually, I want to be able to help people through my blog, not just myself, so if you have issues or situations you want me to try to address, let me know.

~Brutally Honest Eccentric~

Forcing Progress

I have mentioned that I dealt agoraphobia a while back and that Ingress (the pre-Pokemon Go augmented reality game) has helped me immensely. It helped me find local friends, get out of the house, find a way to break through the fears and isolation. Winter is a little harsh for me emotionally. Between vitamin D issues (yes, I take supplements), the cold – I do hate being cold, snow… ew. It’s harder for me to play as often because walking and using my phone in freezing weather isn’t something I try often.

Since I don’t drive, my fiance will sometimes drive me to some portals provided I want to burden him with my game after a full work week. Sometimes he offers and I still decline… However, I do play while we’re in the car running errands or out for the day, so I burn through my equipment, don’t have many chances to refill it, and still don’t really socialize.

This is my winter. It’s tired, cranky, wrapped in a blanket on the couch. This weekend, I wanted to make plans. I wanted to do something, to see people. My fiance works weekends so I was trying to get people together from the game to, well, get together. Friday night we planned on meeting up at 7pm. I spent the entire day convincing myself I really wanted to do this because – well, it’s not really spring yet and (besides a day with my mom) I hadn’t really gone anywhere without my fiance in months. I started to feel like I was taking steps backward. I didn’t want to go to the point that I started to wonder whether if I was afraid to go.

By six, I finally made myself get dressed, get my things together – purse, phone, etc. I looked through our chat channel after I did all of this and realized we didn’t seem to have enough people. We need eight to come together to make the portals high enough for the gear we wanted. So, we rescheduled. Eight on Saturday. I spent all of yesterday having the same conversations in my head as I did Friday. At one point, one of my friends cancelled and the disappointment of it made me not want to go at all (we’ll talk about disappoint next time, I’m REALLY REALLY bad with it). However, I again got myself together and ready to go in time.

I went out, my friends picked me up (who shall remain nameless until I ask them whose name I can use – I’m still new at this!) – and we met up with the others in the freezing cold. Realizing standing outside for this was not high on ANYONE’s list, we got back into whomever’s cars and got our gear. After we got the gear we wanted, we went to a nearby diner for a bit to eat, chill and discuss life (and, obviously, the game). I am doing way better today than I have been for the past week so far. I needed this. As much as I wanted to back out, I am glad that not only did I push myself, but my friends pushed for me as well.

Sometimes we don’t want to do things we need to do. Even if it’s something fun, we create reasons not to because it’s easier to isolate or to just say no or to go back to bed. I hope you get out there when you can, even when it’s hard. Whether it’s for a game or a doctor’s appointment or a cup of coffee with your mom, push for it. Reaching it could be exactly what you need to get through tomorrow.

~Brutally Honest Eccentric~

I. Hate. Everything.

I had every intention of writing yesterday. I opened the window several times to do so. I stared at the blank screen until I wanted to break it. I have gotten my blood test done but don’t have the results so I haven’t really fixed my medication yet. I’m not sure at the moment if I mentioned it’s off, but it is. Stopping one medication means throwing off the balance. I’m now actively riding the bipolar roller coaster. There is more than just up and down, more than mania and depression.

It has the ability to create or destroy almost any feeling – like irritability. That’s the one that kicks up most often for me right now. It comes when I have all the energy and nothing to do, and when I have everything to do and none of the energy. Most frustratingly, it comes on its own. It shows up as the “I hate everythings.” The normal annoyances are there, and the little ones I’ve grown to ignore or cope with become glaringly obvious. I stare at things that I would normally roll my eyes at and move on.

I hate the things people say, the way they say them, the way a picture looks or the meaning it’s supposed to hold. I hate the sound of a newscaster’s voice and realize I hate the sound of my own voice while complaining to the air. I hate that I let my coffee get cold and then I hate that I finished it because now I don’t have any. I hate my hair. I hate my mental illness. I hate my medications. I hate myself.

Maybe an hour later, maybe the next morning, this will pass. I will realize that I don’t really hate these things. Even while it’s happening I know I don’t hate them, but I FEEL like I do. Today is better. I still hate that my coffee is getting cold, but there’s more in the pot still and I know I can reheat it. I get frustrated at posts on social media but I shake my head, and I scroll by. My fingers don’t shake so badly at words on a screen or voices from speakers. I don’t cringe as badly when the cat meows (because for some reason she’s determined she must always tell us when she uses the litter box). I don’t want to cry just because I need to take my morning pills.

The world is no better than it was yesterday, but I feel better about being a part of it.

~Brutally Honest Eccentric~

The Inconsistencies of Sleep

I wake up every one or two hours, pretty consistently. I hate it. I often think I took sleep for granted when I was younger. It came every night, I woke every morning. Now it’s waking during dreams (decent, horrid or nightmares), on average, every 90 minutes.

I don’t like to say I’m an insomniac. I think this is an overused word when it comes to sleep disturbance. A friend of mine told me that I have “sleep maintaining insomnia” though I’ve never had a doctor formally diagnose me with any type. I do sleep. I can sleep. I sleep often. It’s just not when or how I wish it was. If I sleep around sunrise, I’ve learned I can get almost six hours of uninterrupted sleep. It’s just not a convenient time for me. My fiance leaves for work at around 2:30am most mornings. Sleeping at 6:00am means that I am sleeping alone most days. When he is off from work, I can still sleep those hours even if he is sleeping next to me so he is not what is waking me through the night.

I have tried stopping the coffee earlier, drinking less caffeine… These things seem to have no effect. I try to go to sleep at the same time every night. I have my rituals (make the bed, brush the teeth, pee, etc.) but it only means I can FALL asleep. I know when I have been stressed, I wake more. I know when I am depressed, I wake more. I know if I have had an emotionally draining day, I wake less.

I have tried melatonin and medications and sleepytime teas. I have tried meditating. I have tried so many suggestions that I have just accepted that I will hate this. I don’t know why it happens. I do know that time of day or night does play into it, so sometimes I do still wait til sunrise to sleep if I have woken too often, or from a nightmare.

So many offer advice and I often find myself saying, “No, that doesn’t work either,” but I appreciate their efforts. If you sleep like this as well, the only advice I have for you is when you find something that works, even if it means sleeping at what most people consider odd times, go for it.

Life is about choices. Make choices that work for you, even when it comes to something as simple as sleep. Your life is yours and if you can feel more rested by sleeping in four hours shifts, why not? Some may think it’s weird I pass out at sunrise sometimes, and that’s okay. Their opinions on sleep patterns aren’t my problem, nor yours. Stay strong, sleep well.

~Brutally Honest Eccentric~

Showering. It’s possible.

So, today I really need to take a shower. For many people, this is a simple, everyday task. For many of us with depression and anxiety issues, this is a monumental feat. You take a shower, dry off, go back to your day. What’s the big deal? Right?

For some of us, it is a much longer list. You may have to: find towels, turn the water on, get into the shower without slipping, wash your hair, wash your body,  shave your underarms, legs and stuff, which may require sitting and then standing again without falling even if it makes you light headed, rinse everything off, get out of the shower without falling, dry off, drink water because you’re now dehydrated.

It feels overwhelming. It feels like an impossible task. I make deals with myself: I just won’t shave this time, I will shampoo but not condition, I’ll do these next time. Even then, it feels like I’m embarking on a potentially dangerous and overwhelming journey. It has to be done, but I will admit it is not done every day. It’s not done nearly as often as it should be.

Today, however, I will do as the day demands. I will “March 4th” and get into that shower and do what needs to get done. If you can today also, I am proud of you. If you’re not ready to tackle it today, I’m still proud of you for knowing your limits and I hope tomorrow is an easier day for you.

If you don’t live with mental illness, I hope this gives you a small look into how an everyday task for you can be overwhelming for us. No matter whether you live with depression or not, I hope you embrace today. March forth and attempt your goals. Don’t forget that even though tomorrow is the “March 5th” – you can still attempt any goals you could not finish today. I have faith in you. I have faith in me. We can do this!

~Brutally Honest Eccentric~