Her Name was Ulla

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I found out yesterday that we had lost another member of our tribe, pseudonym blahpolar. I also found out yesterday that her offline name was Ulla, and I am certainly in agreement with the rest of the Bipolaratti that said name should be remembered. You should join us in remembering her and her name on the 10th.

Heh, off to a disjointed start. That’s pretty much what I expect this to be on the whole. I feel like I should be full of words and meaning and memory-sharing, but like… I guess I’m just in shock. I knew she wasn’t doing that great, even if I wasn’t the best blog poster or commenter. I’d actually been debating emailing her for some time to check in, since she’d gone unnaturally quiet. That was the opposite of my concern when I brought her into The Bipolar Blogger Network — I told her she posted. A lot. And that it wasn’t a bad thing per se, because it wasn’t. It was just a bit overwhelming to pick through to vet her blog properly. And it was a good blog, headed by a talented writer and artist with her own slant on life. They say that on the internet, only about 1% of its denizens are net contributors, and she certainly was.

Aaand that sounds stilted and formal. Good job, brain. ¬¬

But really, what do you say in these circumstances? If Ulla had been my BFFFFF, would stand up and say, ‘What a magnificent bastard’. I’ve told bat that — he isn’t allowed to die unless he can pay for me to come to his funeral to say that. I think that Ulla might have liked that as well. I didn’t know her as well as some other folks (read Dyane’s amazing tribute here), but I certainly liked her. But I feel really really awkward when people tell me that they are sorry for my loss. Much like Wendy before her, I cared in the way I care about all my fellow Bipolaratti… but it’s not like they were my BFFs. I mourn their losses because they were people. I mourn their losses because people I know and like, and people I don’t know and/or don’t like are suffering. Sometimes mourning seems all that I can contribute. Is there an afterlife? Are our lost comrades looking down, knowing that they are missed? I’m somewhere in the agnostic-apathetic range and not really sure that I believe in gods and God and an afterlife. I guess I hope so, if only so people can go to a place where they don’t hurt anymore.

Anyways. Ulla. You magnificent bastard. You were pre-missed, and now post-missed, but never forgotten. In your honour (dubious as that might be), I’ve started an In Memoriam link section on The Bipolar Blogger Network, right under the main bloggers category. I’m half-tempted to add Wendy’s url, even if she deleted her blog before her death. Because you’re still part of the family to me, and well… just want to do my bit.

And a Word From Our Sponsors…

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Right so, hi. If you guys haven’t picked up on it yet, I’m the one that actually runs The Bipolar Blogger Network. In spite of having a nominal co-founder, it’s been me behind the curtain for… eesh, four and a half years now. I’ve seen people come and go, I’ve had to be ‘mean’ to some folk, kind to others, and often make people wait forever for responses  — sorry y’all, you seriously have no idea how much time and effort each evaluation takes. It takes awhile for me to find the spoons to do them, but I try to do them and do my best for everyone because I value my network, its bloggers, and its readers.

So you might guess how I felt when one of my best friends messaged me this:

 GP found dead after being suspended over bipolar disorder blog
https://www.theguardian.com/uk-news/2016/aug/26/gp-found-dead-after-being-suspended-over-bipolar-disorder-blog

My heart clutched uncertainly at the headline — it couldn’t be who I thought it was. And then I read down… and it was. It was one of our network bloggers. Or former — she pulled herself from the network when the complaint happened. When that happened, I couldn’t imagine that it would lead to her death murder at the hands of stigma. I was merely sad to see someone who was sweet and friendly having to hide herself because of a silly person complaining (now a murderer).

According to the article, she died on the 24th of November. My last email from her was on the 11th of November. Of course, I’m sad. And angry. She, like so many of us, wanted to blog because it is great therapy. We have a great community amongst ourselves, filled with understanding and compassion, and freedom of speech means that we should have every freaking right to do that. Yes, she was a doctor, but how under the Light should that preclude her from wanting to write about herself? I’m soooo sorry it wasn’t something sexy or acceptable, but also, really? REALLY?! One thing that I love about the UK is that is generally a lot more tolerant of bipolar. We have organisations like Mind and Bipolar UK that do their best to provide support and spread awareness, and I have felt perfectly safe in my life and position.

But then, I wasn’t a doctor. I’m not in a position of ‘public trust’, per se. But here’s the thing — why should she as a doctor not ‘be allowed’ to candidly get things off of her mind? What possessed the person who thought that her ability to work should be questioned because she had a mental disorder, one that she was getting treatment for and doing her best to manage her work/life balance? Yes, bipolar can affect one’s quality of work, but so can a bad night’s sleep, a night on the drink, an argument with someone, anything. Should it mean she is incapable of being a doctor? Apparently, one out of one stigma-wielding patients says so.

I just. Ugh. This is part of why I write — I want to show that those of us with bipolar are people like anyone else. Sometimes we have it a bit (or a lot) worse because we have an exceptional set of circumstances to deal with. I have bipolar, yes, but I also have a beautiful and happy family. I have a job I can work from home. I have hobbies and friends. Wendy had all of these things too, less the job at the end. Someone let their fear rob her husband of a partner, her children of a mother. Someone let their fear rob a woman who loved her job of her job.

Someone has a lot to answer for. A part of me wishes I was an angrier, more vengeful person, one that would demand repayment in kind, Hammurabi-style. I’m not though. I hope this person, whomever they are, realise that actions have consequences, and that their actions rebounded severely. I hope that they think in future about stigma. I hope that people read about this, and think about how stigma kills. Because it does, and this woman’s only ‘sin’ was to want to write about her disorder.

Anyways, I’m going around in circles. I just had to get it off my chest because I’m flailing and upset. Goodbye, wychdoctor. Goodbye, Wendy. You are definitely missed.

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*pokes head up*

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Why, hello there,

Okay so like, I’ve actually been actively avoiding blogging here for a few weeks. Why? Because I went on vacation. It was a great vacation, fyi — I think I managed to relax for the first time in my life. But as Natasha Tracy points out, vacations can make bipolar worse. But I did everything right, and on the base of good health. I kept my sleep routine pretty close to normal. We didn’t change time zones; we ended up on the Isle of Wight, so still in the same country. My husband and I already had a pre-kid established vacation pattern of doing very little on a day to day basis, and that works well with kids. My in-laws were also there, but outside of dinners, we mainly did our own thing and they mainly did theirs. I hope that in future  years we do a bit more together, but we’ll see how that goes.

But yes, doing well! Which is good, considering that I have no idea when I’m actually supposed to see Dr. K next. I know nothing about where my ADHD referral stands. My prescriptions keep getting messed up; this has hit the point where I’m probably going to have to book in with my GP and go over the entire list together to figure out why it keeps getting messed up. I know my Depakote got bumped back up to 500mg twice a day because of a way out-of-date letter surfacing claiming it to be such; I got the GP to change it back to ‘right’ grudgingly by pointing out that the dose at that level gave me never-ending blinding headaches.

That’s about all I can think to say right now, so I’ll pootle off and try to think bedward thoughts.

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Medicated Mix-Ups

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If there’s one thing to know about me, it’s that I loathe using the phone. Undiagnosed/untreated ADHD don’t go well with trying to focus on a crackly voice down a tube with no facial or hand gestures to help parse what’s being said, so it’s a huge anxiety-causing thing. Hell, even thinking about using the phone pushes my anxiety levels beyond the point of reason, and writing about it is making my heart flutter slightly.

So of course, and I’m not sure why, but half of my meds are suddenly screwed up. My Depakote got doubled based on the last letter from my psychiatrist (which I managed to get fixed for at least this month), while my Zoloft has apparently been halved when I go online to order my prescriptions (despite the fact the right dose was on the selfsame letter). Two out of three ain’t bad, most people usually say, but it’s rather the opposite in this case.

The phone comes in because I probably, likely, am going to need to call Dr. K to get her to sort this out officially. I could potentially ask my friend who works at my doctor’s office to fix it for me, but I don’t want her to get in trouble for helping either. It would be one thing if I hadn’t gotten a call from Dr. A at the surgery harping about the Depakote, but he did, so my paranoia is turned right up when it comes to getting my friend in trouble. Even if asking her would be the easiest thing for me because oh hey, no phones. At least Dr. K is awesome insomuch that I can drop call her and she’ll call me back,but still, still…

Anyways, writing this in the hopes it will spurn me on to call tomorrow and ask her to contact Dr. A or Dr. N about it so it’ll be right before we go on vacation at the end of the month. Otherwise, I’m going to be running short of my Zoloft and that would never do.

Hope y’all are well out there. And preferably, not on fire; it’s roasting here in the UK.

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PS — I have a couple of other blogs that I do, and one of them I’m trying to get into the habit of doing as a daily with opinions and life and whatnot. You can find that one at Raeyn[Dot]Com. T’other is at the domain this used to be on, Digitalglitch. That one is crafts and hobbies, and I really need to do an update there as well!

Eye Twitches and Crazy Mail

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Me being a not-morning-person

My body has continued to make sure that I understand fully that I might not be outwardly stressed, but inwardly is — my right eye has been twitching as if it were trying to take flight for days now, and I developed a huge fever blister. Thanks body, here I am trying to take the high road on something causing me anxiety, and you make me out to be a liar! Hrmph! Having said that, I decided to quit waiting for Instagram to actually engage in customer service, and set up a new account. I think the only one of y’all following it was Laura, but if any of y’all are bored enough to want to see pictures of me, my kids, and crap on my desk, you’re welcome to come join the party!

Anxiety aside, I’ve been doing really well. I’m relieved that the current medicine combination continues to do such a good job of keeping my bipolar in line. I feel pretty solid, you know? And it’s been long enough since the current combination was put into play that I, for the most part, have kind of mentally blocked/forgotten what ‘normal’ felt like. I prefer this normal, yanno? The normal that has me smiling and laughing and being involved in my family’s life (or as much as crippling chronic fatigue will let me be). Naw, my only complaint on that front is that I still have no idea when I’m going to see my psych next, but I’m not complaining at this second because it means that it’s increasingly less likely that the letter is going to come inviting me to attend while I’m on vacation!

Wait, was was the crazy mail then?!

Now, the crazy mail was unexpected goodness. Even if it didn’t have its usual private and confidential across it, I just knew it was a letter from the mental health ward. To my massive surprise and pleasure, it was a copy of a letter from Dr. K to my GP (Dr. N) asking him to get on the ball with my ADHD referral. I got myself excited and misread it as saying that she’d organised the funding as well, but still. It’s amazing to see that she’s working so hard to push this through me. Yeah, I know that she said she was going to do just that, but it’s still edifying to have the proof in your hands. It’s still not a pinned down, confirmed and paid for referral, but it means a lot to me that someone is out there trying to help me improve my quality of life in more ways than one.

Anyhoos, it’s Monday, and that’s my ‘day off’, so I am going to get back to zoning out while the littlest has her nap. Hope all of y’all out there are doing well.

<3

 

Equanimity

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Equanimity  :noun equa·nim·i·ty \ˌē-kwə-ˈni-mə-tē, ˌe-kwə-\
:calm emotions when dealing with problems or pressure

Equanimity has been something that I have been seeking my entire life. Between untreated mental health issues and my not-than-healthy growing up home life, I tended to be a violent, angry lashy person. I’m sure that would surprise a lot of people who have only known me the last couple of years, as I’ve been able to make massive personal improvements with my improved circumstances. I’m still not perfect — I still have a tendency to blow up over little things, but! The blow up of today is miniscule compared to the nuclear blasts of the Beforetimes (go go oblique book reference!).

So yes, bit of background proffered, and on to yesterday. Yesterday, I woke up with a message from a friend that my Instagram account had been hacked. As I’d linked it with Facebook it wasn’t too hard to get it back and change the password, but the damage was already done — the spambutt (as I’m calling the person who took my account for that bit of time) had followed thousands of accounts. Thousands. Considering the number before that was something like, 114… yeah, naw. And oh, Instagram locks you out if you try to delete ‘too many’ accounts, so I only managed to pare a thousand and a bit off before it wouldn’t let me unfollow anyone. Add in it being a holiday weekend in the States, and I can’t get anyone working for Instagram to freaking respond to my requests for help (or at the very least, to not get locked out for trying to tidy up shop).

I think that most people would be annoyed and stressed if that happened to them. After all, both are reasonable and healthy responses to an upsetting situation. But somehow, I took it mainly on the chin. Yes, I’m frustrated, and yes, I’m annoyed… but I’m not screaming or sobbing or throwing things outside of a few minutes of original ‘please children adults are talking ktnx’ terseness yesterday morning while we tried to sort out what was going on. And since I can’t do anything with it right now, as much as it annoys me, I’m doing my best to do other things to distract from fixating on it. Could I do better? Sure. One can always do better. But compared to what used to be ‘normal’, I’m freakin’ Buddha on a cloud here.

So yeah, doing alright. Better than alright in that aspect. I felt that I deserved to pat myself on the back for that sort of thing, because maybe it’s a minor step to others, it’s a huge one for me. 🙂

Hope all of y’all out there are doing okay.

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*Waves Sheepishly*

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Hi everyone! I hope nobody has been worried about me. I’m fine mentally, just really, really, really hampered by chronic fatigue. I get my ‘mandatory’ writing done in the morning, and then get stuck into work + caring for the little one, and there’s not a lot left at the end of the day. I just sort of curl up mindlessly with my knitting and my gaming (and then forget to write about that as well. Whups).

But yeah, mentally things have been grand. Between being back on the extended release Seroquel, that final bump to the max dose of the Zoloft, and going down to a less headache-y dose of Depakote, my only complaint is that I’m burning through my melatonin supplies to try and get my go-to-sleep back on an even keel. I have no idea when I’m going to see my psych next, though the plan was (as I’ve said before) to switch from Depakote to Abilify at some point in the future. It would be nice to be on a med that doesn’t give me headaches, or 20+ pounds of extra weight. ¬¬

I’ve also not heard anything on the ADHD referral that Dr. K was working on trying to get pushed through. One of my friends recently started working on my doctor’s office, and she said she didn’t see anything about it there in spite of the fact I know firsthand that Dr. K had contacted them about it (as she did it on front of me). I’m frustrated obviously, especially since adult ADHD isn’t taken seriously here, but meh. There is no use fretting about it.

So yeah, still alive, limping by. So it goes. Hope everyone out there is doing alright!

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My Mind is Okay, and my Body is Fine

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And by ‘fine’, I mean the ‘original meaning’ of Fucked up, Insecure, Neurotic, Emotional... well okay, the fucked up part, at least. I’ve had headaches that taking paracetamol (Tylenol) made worse in spite of the fact I strictly limit myself taking it for when I really need it. That went on for a couple of days to the point where I didn’t take anything after a day or two of trying to treat it. And then I got some pinchy back spasmy things, though thankfully, paractamol + Nurofen Plus did the do (Nurofen Plus = ibuprofen and codeine). Yeah, got to love the need to throw everything at anything. ¬¬

Having said that, I was bemused to catch myself suddenly able to manage a few household chores. I’d commented to my husband that it probably had something to do with pushing back not only the bigger pain, but the constant level of physical pain that chronic fatigue and mental illness bring. It wasn’t much — just sorting through laundry and doing some dishes, but it’s a lot for *me*. If I’m honest, if I make it through a day mainly cheerful while remembering to eat, that’s pretty good as far as I’m concerned.

Really though, the brain has been holding on pretty darn well. I sort of figured the extended release Seroquel worked better for me than the normal release, but I hadn’t really appreciated just how much better until those couple of shitty months. My antidepressant is at its max dose, but that’s fine for now. My only niggling complaint right now is that my getting to sleep is still a bit rocky if I go for more than a day without taking some melatonin, but that’ll even out in time. I think.

At this point, my biggest big-big complaint is wondering where in the aether my ADHD referral is. One of my friends works at my GP now, and she confirmed that she hadn’t seen anything about the referral there recently. It’s been a couple of months now since I was sitting in Dr. K’s office watching her phone the surgery up to push it along, so maybe it’s gotten somewhere. Maybe it hasn’t. I continue to hope that the system will eventually vindicate me, but for now, it’s frustrating and occasionally hilarious. Yes, hilarious — I hear some pretty weird crap from my brain static shorting out, and now that the husband and I have a firmer mutual understanding of this, I can share what my brain was telling me I heard over what was actually said, and sometimes it’s pretty random. Still, it would be nice to have it yanno, working and focused (so that I don’t forget about things like this post over the course of a day or two, doot doot doot).

Anyways, tl;dr, I’m alive, mainly doing well, just sort of low spoon when it comes to writing. So it goes sometimes. Hope y’all are well out there.

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Bumbling Along

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*checks date of last post* Whups, it’s been a month. Oh well.

At least that month has been a goodish one, at least mood-wise. It took a bit for my body to adjust back to extended release Seroquel — thank the stars I have an adequate stash of melatonin for those rough periods. I’m not getting to sleep in my classic style; that’s where I start to drop off while reading. I just sort of roll over, close my eyes, and get to sleep fairly quickly. It’s pretty okay, and I’m not having fractured sleep, which is even better.

What I *have* been dealing with is super-fatigue, and a few physical injuries. For example, I managed to fuck up my right wrist spectacularly the week before last. I’d stood up while holding a sleeping Littlerbit, and my right leg had fallen asleep and gone out from under me. I managed to not chuck her across the room or wake her up, nor did I mess up my ankle. At least my right arm is my non-dominant, but it’s still been a long and painful period of limited function. It’s still a bit tender, but it’s not bothered by knitting, sewing, or typing, just picking up heavy clingy children. So of course… *chuckles ruefully*

There’s been one good thing going down the past month or so — I’ve managed to break through some of my executive dysfunction in minor ways and not be a complete lump around the house. For example, my husband doesn’t usually directly ask me to assist him because he appreciates that I’m kind of super-broken and using most of my resources to be vaguely pleasant and doing basic things. So I’ve surprised myself by catching myself responding to his statements about doing things with, ‘Can I help?’, or ‘I can do that’. I still can’t do much, and in a lot of ways there’s even less that I can do, but it makes me happy that I can better support my spouse (who honestly carries all of us on his back without complaint and it’s more than anyone should ever have to do).

And that’s about it, really. I’m alive, keeping my head down, but mainly doing alright. Hope you guys out there are doing as well as can be.

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The Best Sort of Mistake

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So apparently, I was incredibly wrong about something. It turns out that Dr. K wasn’t leaving — she was about to go on vacation and wanted the matter of my Seroquel resolved before she left! Oh man, I cannot express how huge a relief it was to walk into the hospital today and see her face.

And it was a productive, blessedly short appointment! Like, we’re talking 15 minutes with a lot crammed in. She called my GP to remind them to get back to her about the ADHD referral while I was there, which was a nice touch. We also discussed the meds plan for the next bit. We upped the Zoloft to the maximum dose (from 150mg to 200mg). We are both down with making the Depakote go away since it’s not really helping and the side effects are pissing me off. She wants to switch me to another mood stabiliser… I think it was Abilify? Doctors here always use the not-brand name for meds, which is why I know how to say things like quetiapine. ¬¬ She didn’t want to start me on it now though ’cause I pointed out that even if I’m feeling stabler with the Seroquel back to the extended release, I’m still dealing with depression and anxiety out of the aether. She said that whatever it was she had to mind could have increased anxiety in the first week or two, and she didn’t want to make worse what was already going on. Fair enough. I just like knowing that we have a plan of action.

As for how I’m feeling… ask me tomorrow, ha ha. Today has been a hella busy day, well beyond what I normally can tolerate. Tomorrow is also a return to status normal here at ours, as the bigger kiddo will be back in school after the two week Easter holiday. I love her very much and enjoy her company, but her being back at school means that I will be able to get myself and the little one back on the ‘proper’ day schedule. Smallest permitting, I am going to have a grand day of not having to deal with people for a few hours. 😀

Hope this finds everyone well!

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