To Do List:

We all have our days where it’s one foot in front of the other… simple tasks are hard, harder tasks are unthinkable and even enjoyable (usually enjoyable) things feel like work. I hate lists… I get overwhelmed by them, but I figure for today, why not. This is what my “list” usually entails (in literally no order at all):

  1. Coffee … or tea … caffeine.
  2. Make cigarettes
  3. Take Meds
  4. Check social media
  5. Play Clash Royale
  6. Play fishy game (like Candy Crush but I like it more)
  7. Play search and find game
  8. Eat
  9. Shower
  10. Clean anything
  11. Drink enough water (near a gallon)
  12. Check the cat has food and water
  13. Take nap
  14. Go to bed

What my day really looks like lately:

2, 13, 1, 12, 2, 5, 4, 3, 5, 11, 3, 8, 3, 14.

I have no interest in half my games, not even Ingress right now because it’s been so hard for me to get together with my friends. Eating happens because C is a chef so, food happens. I’m just kinda blowing off most of everything still. It’s not intentional, it’s just that my motivation level drops significantly under stress or during depressive episodes. I want to do all the other stuff, or rather, I want to want to do the rest of it.  I’m out of spoons, I’m out of sporks, I’m just out.

So there’s me for the moment… how’s your list looking?

~Brutally Honest Eccentric~

Still worse than I think…

It’s been days because I haven’t been able to get a hold of myself. I can string a few words here and there, perhaps a facebook status but even those seem rare for me at the moment. Our apartment is clean, I am clean (I showered, go me! woohoo!) and the cat has food and water. Beyond that, I can’t focus on a show or a game…

I want to feel motivated to do SOMETHING. I want to feel motivated to do ANYTHING. I don’t. I barely had the motivation to make the cup of coffee that’s fueling this post. I’m still not sure how I managed to do that much.

Yesterday I was nauseous again. My fiance had one day off and I felt like I ruined it. I know that I’m still more depressed than I think I am because I feel like I’m ruining everything lately. I know I’m not. My logical mind is like, “Just stop, you’re doing fine!” My emotional mind is off somewhere crying in the corner again.

My friends have done a pretty good job a teaching me to stop apologizing for self care, so I hope you all are doing better than you think you are, even if it’s just for the day.

~Brutally Honest Eccentric~

Worse than I think I am…

It’s strange when my actions don’t really match what I think my emotions are. I have been off lately and I’ve been trying to figure it out. I haven’t been up for talking to most people, especially not one on one. Conversations about myself are still down to “How are you doing?” “Oh, I’m okay.” We all know I’m not but I’m okay enough to get away with it.

I can’t get away with it at therapy though. I don’t remember if I gave him a “name” or not, but for today, we shall call him Jim. Jim doesn’t let me get away with “I’m okay.” It’s pretty much his job to call me out on that. So, I started going through the fact that hygiene is getting more difficult to handle again and I’m losing interest in most of my games and my shows that I usually love. It hits me. These are signs of depression.

Some of this stems from being so sick as a side effect of my body getting used to a medication again. A lot, actually, because besides ‘feeling sick’ – I’m also isolated right now because leaving the house for more than an hour or two makes me even more sick the following day. I can’t change this. I need the medication for now until we can at least discuss other options. I need tests done for that. I am working on it all the best I can…

However, I’m still more depressed than I thought I was. This doesn’t usually happen to me. I’m usually much more self aware, much more able to gauge my own emotions. Being sick for a month will screw with your perception of everything though, I think, including yourself.  I am safe, I am not in danger of any type of harm to self or others, I’m just not quite emotionally available to people right now. Not as much as usual.

I will drink my peppermint tea (which I am so tired of but it helps), and I will snuggle with the cat. I will find new games to play for now for distraction and new shows to hold my attention until I’m more myself again. There’s just a lot of stress and sadness and grief in my life recently and I need to take time to process it.

I hope if you find yourself in a similar position, see signs of depression in yourself before you really “feel” them, that you give yourself permission for self care. Don’t just wait for it to get worse, do whatever you can to stay even or move forward, so when it passes, you’re ready to keep going in life.

~Brutally Honest Eccentric~

It’s a little harder for us…

Things you stop taking for granted when you have mental illness:

  • Sleeping through the night
  • Showering regularly
  • Getting out of bed
  • Getting dressed
  • Leaving the house
  • Going to parties
  • Finding joy in your own hobbies
  • Talking on the phone
  • Being able to make your own appointments
  • Feeling loved
  • Remembering to eat
  • Caring if you don’t
  • Being mildly annoyed instead of severely agitated
  • Smiling
  • Going an entire day without bursting into tears

There are so many more, but having the attention span to read long lists would be one of mine. I’m not saying that people should consciously appreciate the things that we can’t do and they can, but I wanted to just take a short moment to say, “Hey, we get that this comes easy to you, but it’s really hard for us, and no we’re not just saying that to get attention.”

What’s one thing you used to take for granted that you now have trouble with?

~Brutally Honest Eccentric~

Life after Neurology, or during it

I may have underestimated how much I have going on in my life currently. I said I would be back after my crash, but then Monday I had my neurology appointment and Tuesday was therapy, so they each came with their own downtime.  We’ll get back to my Sunday and my crashiness another time. Right now my high brain pressure is what’s overtaking my thoughts, so I’m going to go there for a bit. My neurologist, Dr. J., is consulting with another doctor, Dr. M, who I may be seeing as well to get his thoughts on my condition and my treatment issues.

I have to, at least temporarily, restart the medication that kills my sex drive as we don’t want this to worsen while we work on finding a treatment plan. The reality is I may have to continue with that medication the rest of my life. Not something I consider with any sort of happiness, but the reality is that between my vision or my sex drive, I would rather keep (both, but if not…) my vision. So, back on the pills I go, and immediately notice another side effect that I hadn’t realized. Yay. Trading pain for misery and pain isn’t high on my list of things to do, but we do what we have to in life.

Dr. M is a neuro-opthalmologist, so basically brain/eye issues, he works mainly across the river but has office hours on this side. I didn’t know whether or not there were any neuro-ops on this side, honestly, which was why I went to the Dr. J in the first place. He works at the same practice as the man that diagnosed me five years go – the one that retired… If you’re looking for a specialized specialist, it feels prudent to get the referral from someone else in the same field.

Explaining my problem to Dr. J. I broke down crying three times, maybe more… it’s a good thing they keep tissues on the desk. I was trying to explain the difficulties in making it to appointments across the river, the fact that although I have gotten past a lot of my agoraphobic issues, I can’t travel alone to the city yet, the difficulties with the side effects, how terrified i was that this was still happening…

I had to stop myself and just explain that I’ve been having a really rough month, that although IIH was plenty reason to be upset, I’m usually more composed in these situations. He’s a nice doctor, he just nodded and said “Well we get through it, right?” Right. So apparently, for my condition there are medication treatments (the other easy one of which I’d already been on for psych reasons and had an adverse reaction), there is putting in a shunt – which is actual brain surgery, and there is a type of eye surgery that I do not know much about nor do I know if that’s even a possibility for me. These are why I need to see Dr. M. … after I get brain scans and follow up with Dr. J.

I am scared. Often IIH (idiopathic intracranial hypertension) will resolve itself. In many patients, it does. For some of us, it doesn’t and then they try harder to find out why – is it a medication, is it something else? We don’t know. So right now my brain is acting like there is a tumor in it, even though there is not (hence the other name for it – pseudotumor cerebri). I am scared… That kind of scared where you just want to curl up in a ball and cry. But I won’t, not yet. I have too many other things to handle. Medications, finding a psychiatrist, discussing blood tests with my GP, grieving the loss of a friend, trying not to isolate myself even though I want nothing to do with people.

I may be preoccupied with my health lately, and my own life situations, but I feel like I have enough going on that it’s a valid way to react. I am used to putting myself aside for others and right now I can’t. The situations going on could land me in the hospital if I’m not careful so I need to put myself first. If others can’t see how this is a healthy way to cope, that’s just not my problem. Luckily, most of my friends, if I don’t respond to their messages, understand that I see and hear them, I just can’t invest myself right now. I have really good, very supportive friends. I am lucky in that while my health may be a problem, my support network is part of my solution.

~Brutally Honest Eccentric~

Ingress, Anxiety and My Plans

Sometimes even when I really want to go out to do something, it still totally freaks me out. My anxiety kicks up in all the wrong ways, even when my excitement is trying so hard to override it. Later this morning, I’m going to go “people.” I’m going out to play Ingress with some friends, and some complete strangers, in a place I don’t know.

I’ve mentioned Ingress before (How I Got Out), it’s the augmented reality game by the creators of Pokemon Go that was the precursor. If you have anxiety issues, I still highly recommend it. Besides handling my agoraphobia, it’s helped with self confidence, making local friends and creates reasons to socialize in both small and large groups. Today should be a slightly larger group than I’ve been with through the winter. It is a cross-faction event, which means both my team and the other team will be playing together and competing together.

My friend Pretty Bit who has helped bring me to many events now, especially the larger ones, will be bringing me to “First Saturday” (on a Sunday) in PA. I’m glad she’s my ride, being with her makes me feel a bit more comfortable going into a situation where there will be many people I don’t know. There will be some I do, but meeting new people can go one of two ways for me. I could feel fine with it and seem a social butterfly the entire time, or I could withdraw and meet people one at a time, head down staring at my screen. Either way, I am determined to go, to have a good time, and likely will pass out when I get home.

No matter which way I outwardly handle this, I know it will take a lot out of me emotionally. I’m good with that though, it’s worth it. I want you to take note note of that… whether you have anxiety or know someone that does… I want you to hold onto the thought that sometimes no matter what you see from the outside, our emotional selves are being used and drained – that feeling I best explained in I can’t always be there for you.. We will need to recharge, whether that’s some time isolating, passing out, reading a book. That time to reclaim our emotional selves is important, especially if you are expecting to “people” again soon.

I will let you know how everything went soon. We can find out if I was a butterfly or a wallflower, or if I won anything (there are contests and a raffle). I suppose when you find out will be a pretty good indicator of how long I needed to crash for. Anyhow, this is me, checking in with my weekend, please feel free to let us in on your weekend plans as well and how you are coping with them.

~Brutally Honest Eccentric~

Invalidation.

Yesterday, I was told that I don’t care about anyone but myself. This wasn’t by some random acquaintance or anonymous internet troll. I got told this by my mother. Last week we got into an argument, yesterday after a week of not speaking, same argument. She was telling me how to handle my doctors. I was telling her that I had it handled.

Any of you with chronic mental illness or chronic pain, you know the multitude of appointments it comes with. You know that sometimes you need to change treatment plans or doctors. I need to change psychiatrists and I am also going to a neurologist on Monday to work on a treatment plan, if possible, for my brain pressure that causes migraines. I’ve had all of this going on for weeks to months. The psychiatric issue has been half handled, the neurology is scheduled. Somehow I was being told that I’m not handling it correctly, that I’m not listening and that – and this one gets me good – I’m going to the wrong doctor for my brain. The reason that last one gets me is that she’s known about this appointment for six weeks.

Sometimes, yes, I do ask for help when it comes to where to go when I am unable to do it myself. This time, however, I had a plan. I had appointments. I hadn’t asked for anything. For some reason, this plan that my mother had been made aware of weeks earlier was not good enough.

This has happened before about a lot of things in life. It’s probably happened to you as well. You make a decision and people support you and back it and then they change their mind. Maybe it’s about a job and your best friend doesn’t think you should quit even though you already put in your notice. Maybe it’s about a guy and your dad doesn’t approve when you get engaged… Whatever it is, all of the sudden it’s as if your choices aren’t good enough. Obviously, being treated this way is going to create disagreements.

Sometimes the change of heart is because of something that is happening or has happened in the other person’s life. It’s okay to change your mind and change your views. It’s not okay to invalidate someone else’s choices because you change your mind though. It’s not fair to either of you. If you want them to hear you, you may need to hear them too.

I work hard to advocate for myself. I work hard to advocate for others. I am assertive when it comes to anyone’s healthcare. I want us to find the professionals we need to get the treatments that are necessary. I have also spent the better part of seven years running peer support on facebook. I have stayed with family to help care for them when they were unable. I have acted as extreme emotional support for people who have been unable to get it professionally. I have shown up on the doorstep of a suicidal friend so they would not be alone. I do these things partly because I can, I have the knowledge and capacity. I do them because it helps me cope with not working. I do them because I love.

So, now, I’ve been treated like I can’t deal with my own medical treatment and told I don’t care about anyone but myself. Honestly, I have been in pain for over a month almost daily. My medication was incorrect due to a differing opinion with a doctor, and a friend of mine has passed away. I don’t really have the emotional capacity to handle the problems of others that I usually do. This doesn’t mean that I don’t care. It simply means that I need to practice self care right now and have boundaries.

I draw the line at anyone invalidating my choices in life, my choices in healthcare and my opinions on how our interactions are going. Why am I telling all of you this? Because people WILL invalidate you in life, and I want you to see that it’s okay to stop letting them. This is me trying to explain to you that it is okay to make your own choices and your decisions ARE good enough.

~Brutally Honest Eccentric~