Daily Archives: January 23, 2016

A clarification. 

In my post called “The Martian” I had said I knew what it felt like to be alone, abandoned, injured, basically what Matt Damon’s character felt when he was left behind on Mars. Yes I know what that feels like but only from when I’m not feeling well. That is what this illness called bipolar disorder feels like. That is not the real me, that is the I’ll me. The real me does not feel abandoned or alone or injured. The real me is strong, happy, capable, helpful to others and in control of my life. That is the real me. Unfortunately, the real me sometimes gets drowned by my illness. But the true me is always there, whether camouflaged by my illness or not.  And it is with this real me, the true me, not my illness, it is with the real me that I live my life. The ill parts are simply short voyages into hell from which I do emerge often stronger and wiser than before. Just a clarification.  


L Methyl Folate

This is the one I am getting. Lets see if it has any perceptible, positive effect on my mood.

(See this post about the explanation: https://bipolar1blog.wordpress.com/2016/01/21/l-methylfolate-aka-deplin/)




5-MTHF Extrafolate-S® 15mg

5-MTHF Extrafolate-S® 15mg

Product No. 00811

Supports normal healthy mood, cardio and nerve function.*
L-Methylfolate is important for normal production of serotonin, norepinephrine and dopamine, and is essential for converting homocysteine to methionine.*

Metabolic Maintenance has always used 5-MTHF made by Gnosis S.p.A. in Italy. We have recently decided to include their registered trademark “Extrafolate-S®” in the name of our stand-alone 5-MTHF products. We have made this adjustment on our website, although our product labels will take a few weeks to reflect this change. Extrafolate-S® is pure S isomer L-5-Methyltetrahydrofolate, calcium salt.

Our products have not changed. This name change was made only to acknowledge our supplier and clarify the source of our 5-MTHF.

Disability Denied!

Today I got notified that my Social Security Disability appeal was denied. To say that I’m in a panic would be an understatement.  To say that I’m baffled, completely unsettled, terrified, and feeling a quite desperate would be equal understatements.  Having been unable to work for two-plus years, multiple hospitalizations, forty-plus ECT treatments, leaves me just wondering what the fuck!!!! It takes to qualify for Disability.  Certainly, in my eyes, I am disabled and cannot work.  The written decision states that I am “able” to work part-time at an unskilled job.  Um, really?  What exactly is that?  Holding a Slow Down sign in traffic?  I just. Don’t. Get.  It.  Part of me thinks maybe I should have continued with the ECT, or been hospitalized MORE, as hard as I’ve tried not to be, just to display how disabling my Bipolar is.  There are no prizes for trying to function, no matter how little.

Since it’s clear that I have to figure out a way to go back to work, here are some of my ideas for what I can do:

  1. Circus clown. This is a kinda “why the fuck not?” choice. I like makeup and I like loose-fitting clothes. I guess I can tolerate the big shoes and the honking nose. I have no problem piling into a car with a bunch of other dumb motherfuckers. I can ride a bike, blow up balloons, and fart on command. This one seems like a no-brainer. However, if that doesn’t work out for some reason, there’s always….
  2. Lawyer. For someone who has trouble getting along with people and could argue with a fire hydrant, this is a natural. Most of this job is just arguing and presenting an opposing point of view. Glaring obstacles: No law degree, “fuck you” is not a valid defense or argument, and judges don’t generally consider pajamas as appropriate apparel for counsel. Dammit! I thought I had that one nailed down. Ok I need to refine it but it’s still a possibility. Let’s be optimistic and look at other options:
  3. Judge. I am naturally judgmental which one would assume a judge is. I also would not mind wearing a black robe, as I could wear anything I wanted under it, i.e. the aforementioned pajamas, or the same outfit every day for a week (yes I DO do that, what the fuck? I never get dirty). I don’t mind sitting high up and surveying my surroundings, like sitting on a small mountain. I enjoy blurting out “Order in the court!” or “You are out of order, sir!” in my daily dealings with people. I would like to have my utterances respected, or even better, to cause people to pee their pants just a little when I speak. On the off-chance that this occupation doesn’t work out, I present my fourth and final option:
  4. Therapist. As I often say, I have an honorary PhD from all of the therapy I’ve done over the years. I know how it works. I can sit there silently gazing at someone with the best of them. I’ve mastered the phrases “How does that make you feel?” , “That must be tough”, and “Oh my God! My Dad is a total dick too!”. Some of my less orthodox methods that might be questionable are the phrases “What in the FUCK is WRONG with you???” or my sometimes lack of a poker face, resulting on an open-mouthed look of horror on my face. Horrifying your therapist (or knowing that you did so) might interrupt the therapeutic process. I don’t know, but over the years I have been amazed that I have never been able to elicit the horror-face. Maybe it’s a class they take, The Poker Face. I haven’t mastered it.

Friends, if you have any ideas as to how I might support myself, please, let me know. There may come a time when I have to write this fantastical blog from the homeless shelter, but I’d like to avoid that.  I’ve heard that homeless shelter wifi sucks.

Filed under: Bipolar, Bipolar Disorder, Bipolar ECT, Psychology Shmyshmology Tagged: Bipolar, Bipolar Disability, Hope, Humor, Mental Illness, Psychology, Reader

26 Pieces of Advice That Have Actually Helped People With Mental Illness

My favorites are # 10 and 14!


26 Pieces of Advice That Have Actually Helped People With Mental Illness

With that expert’s list of ways to manage anxiety, the latest trendy mental health app and that “magical cure for depression” your aunt heard about on TV, it seems like everyone’s full of mental health advice these days.

So, we asked our mental health community to share pieces of advice they’ve actually found helpful. These little nuggets of wisdom aren’t FDA-approved, but when used correctly side effects may include: self-care, acceptance and a little more patience with yourself.

Here’s some advice that’s actually helped people with mental illness:

1. “On a particularly difficult day, I was trying to fight through an anxiety attack and finish all the child-related tasks I needed to complete. My husband kept offering help, and I kept refusing. He pulled me aside in the laundry room as I was frantically folding another load and said, “Just let me help you.” It doesn’t immediately make the anxiety go away, but it’s helped me learn to let go.” — Maria Heldreth

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2.Don’t wait. See a doctor. Don’t be afraid to ask for help. Don’t be embarrassed.Chances are, someone knows exactly what you’re going through.” — Kristin Salber

3. “I have depression and anxiety (as well as other chronic medical conditions), and after the worst week I’ve had in a while, my doctor  said, “Find something you enjoy, and if you can’t find that, find the joy in something.” This really had an impact on me and still reminds me to look for a silver lining.” — Faith Merryn

4. “I have generalized anxiety disorder, and I made friends with someone who’s extremely similar to me. She told me to always be myself and the people who truly care will stick around. It truly did help.” — Julia Ann Lange

5.Words can hurt to say, but they need to come out. Write all those words down on paper.” — Melissa Cote

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6. “A friend recently told me that no matter if I get a job one day or not, your life matters as long as you can make people smile. When I think of it that way, it’s easier to see my life as something of worth.” — Emma Wozny

7. “A great therapist I had told me to focus on ‘harm-reduction, not perfection.’ I felt like I was expected to magically ‘get better,’ and she helped me learn that starting with baby steps was totally OK.” — Jen Decker

8. “Someone said, ‘I’ve been here, I know a way out, I’m here to show you too.’ And, ‘It gets better, it may not leave, but it gets better. And it has.” — Tom Everman

9. “I have anxiety and major depressive disorder. This is going to sound ridiculous, but my best friend once told me, “When you’re sad, watch ‘The Simpsons.’” It actually works when I’m panicking, too. It gets my mind off whatever I’m obsessing about, and I usually end up laughing.” — Dawn Czarnecki Seshadri

10. “It wasn’t long after my diagnosis that I was told pretty bluntly: ‘This illness is has no cure. You’re going to carry this illness for the rest of your life. So you can either wallow in the weight of that, or you can fight for your only life and make it a good story.’” — Lyss Trayers

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11. “My depression and anxiety stem from a traumatic childhood. Just hearing ‘it wasn’t your fault‘ from my psychologist was incredibly helpful.” — Kathrine Elise

12.Don’t always believe what your brain is telling you.” — Kerri Lewis Brock

13.It’s OK to feel sad. You don’t need to pretend.” — Allyson White

14.The best advice: Treat yourself as if you were a good friend.” — Julie Jeatran

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15.Celebrate every accomplishment, no matter how small, instead of dwelling on all the things we perceive as failures.” — Jennifer Northrup

16. “I have post-traumatic stress disorder and bipolar disorder. When I was in intensive outpatient therapy, the counselor looked at us and said, ‘It’s over. That moment is over. It isn’t going to happen again.’ For some reason, that resonated with me.” — Nicole Hanes

17. “They told me this: ‘You are not broken; you are a whole person. You are just human. A human who is living, learning and growing. And learning, living and growing comes with bumps in the road. Remember that this is just a bump.‘” — Kallie Kieffer

18.Your worst days will only be 24 hours. — Arielle Smith

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19.You wouldn’t skip a dialysis or chemotherapy appointment. Your therapy appointments are just as important. No excuses.” — Jennifer Davis

20. “‘I think you need to give therapy a try.‘ Thanks to that, I started therapy and I’m now on the path to recovery.”  — Julianne Leow

21.Your struggles are your accomplishments in disguise.” — Katherine J Palmer

22.Remember: Depression lies. Don’t believe it.” — Beth Brogan

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23.Always ask for help. There is never any shame in asking for help.” — Meghan Shultz

24.Take life 5 minutes at a time.” — Stephanie Lynn

25.You can’t give everyone else everything you have. You absolutely have to save a little of yourself for yourself.” — Shawn Henfling

26.I am a human being. Not a human doing. I just have to be.” — Michelle Balck

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Aftermath And Beyond

Court yesterday was…Blrrg. IT showed up wearing its best “I’m a victim” look and acting all proper and trite. Not once did he ask about Spook. Not once. My attorney wasn’t even there because we were called in early. I am so glad Mrs R was with me. I wanted to rip his ponytail off his fucking scalp with my bare hands and nails simply for being so damned detached and acting like he was being wronged.

Yes. He got a continuation so he can find out how to add her to his insurance. BUT once the state’s attorney looked at his pay stubs and told him the standard is 20% (about four hundred a month based on his income) suddenly he said he wanted time to consult an attorney. Over being told to pay for his kid. Why the fuck would you need a lawyer for that unless you intend to plead hardship so you can pay less?

Further fuckery was moved (to an apartment in one of the ritzy subdivisions) and the notice went to the wrong apartment number so he claims he just learned of it Thursday. Meaning  Spook won’t even be entitled to a month of back support as it only starts when he takes service.

In spite of a full mg of Xanax before leaving…I got bent on the topic of back support. Him, the state’s attorney, all so damned detached, as if Spook is little more than an afterthought. I found the state’s attorney a bit “dish raggy”. Ya know, the quiet passive mousy type that doesn’t really inspire fear, confidence, or even mockery. Benign. Like him. But Mrs R kind of put a hand on my arm to remind me I was getting bent so I forced myself to calm down and make the appropriate “I understand…I see…” noises.

It was Mrs R who brought up the retro support at which point the donor started stammering. I guess the topic offends him. He gave me a look that’d peel paint when I said, “He abandoned his child.”

He still doesn’t think he’s done anything wrong, still doesn’t think he abandoned her. Only through watching the show Most Evil am I finally coming to terms with the fact that some people are psychopaths even if they don’t commit acts of violence or murder. They are pros at “self victimization”, taking no responsibility for their actions and blaming everything on others.

And then he was granted his continuance until Feb 19 and we left the room. Just outside was my lawyer and having never set eyes on him before, it was a little bizarre. I said, “Can we serve him while he’s here so he can’t claim he didn’t give proper service?” Yeah, I don’t think the donor saw that one coming. So up the stairs we went to get it all filed and him signed off on service. My lawyer kept talking to It about his home improvement store job. I just wanted out of there, away from that husk of humanity…

Not ashamed to admit once he signed for service and fled the building, I breathed a sigh of relief. All that time we stood around and not once did he even ask about his daughter. Yet he truly sells that he cares about her. Unfuckingreal. I was there a little longer as the lawyer got me paperwork for the $200 fee waiver. I couldn’t pay it, that’s for fucking sure.

Then it was done for the moment and that was when…BAM. Anxiety hit me like a runaway train. Pounding heart, knocking knees, and the dizziness…I nearly tripped going down the stairs. Mrs R offered to buy me breakfast but I was so woozy, I declined politely and drove myself straight home. It took two hours for my equilibrium to return. That’s the weird thing with anxiety…Even if in the moment you’re not spazzing out…The spaz out will come later.

I am feeling it today like a hangover. All morning my pretzel gut was a wreck. Then I took the lithium, grabbing a bite after the fact…An  hour later I was spewing. (This puke’s for you, Dr. Oz.) Then I got hit with a stream of viciously bright sunlight through a window and that set off a mini migraine. Grrrr.

Wasn’t enough to have a sucky birthday. (My own mother didn’t even call me and when my dad called all he said was, what happened in court.) Only one other than Spook to even wish me a happy birthday was my sister. And it’s not all whinery, I don’ t make a big deal out of my birthday but geesh, MANNERS, motherfuckers.

I guess I should cut mom some slack, she’d spent the night at the hospital with her roommate. The roomie is being placed in some sort of rehab place for a month while they try to get the fluid off her lungs and improve her breathing…

Still, kinda rude, mom. I at least called her on her hatchling anniversary. Because I was forcefed a steady diet of “Be polite, be thoughtful, don’t be rude.” Way for those around me feeding me that shit to follow their own edicts…

So yeah, I feel like I got run over by a semi truck, the aftermath of yesterday’s anxiety. It is a mystery why I don’t go out and do more, isn’t it? NOT. I am barely managing the minimum these days and even that costs too damned much.

Four more weeks I get to turn around and do it all over again. Yippee ki-ya, motherfucker.

So today I am licking my wounds, cursing the lithium nausea (I now remember why I hated it so much in spite of how effective it is) and pondering how I ever saw anything good in the psychopath that fathered my child.

It occurred to me that he’s not changed a bit. He will  never admit he did a damn thing wrong in our relationship or as a father to Spook.

I have matured enough and reached a level of clarity where I can admit that I do self sabotage my relationships because truth is…I like being alone. Relationships feel like a noose around my neck. I try to adapt because it is expected but when that noose tightens…maybe I do get my bitch on more often. Maybe I do act wacko. Because I don’t want to give up but if I run others off…Well, they left, not me.

It’s quite a self realization.

I haven’t given up hope on anything, though. My job right now is to be a mom, not a serial relationship freak.

The crazy cat lady is fine being the crazy cat lady.

Because it was predicted at age six that I would be a crazy cat lady and damn it, for once, I have consistency.

Higher and Deeper

The wind howls and rocks the van.  We feel like we’re in a space ship, hurtling through a hostile zone:

“The wind blew and spit icicles in their faces…” –Carl Sandburg

Periodically in the night we were awakened by crashes as layers of ice and snow slid off the sides of the van and smashed on the punky snow below.

Poor Atina was frantic to go out at first light, but we couldn’t risk it due to extreme high winds.  And since every window is covered either by Reflectix or by handy insulating layers of snow and ice, the only way to check the situation would be to open the main hatch and risk having the door blown shut on some body part–not worth the risk.  So I told Atina to cross her legs till the wind took a break!

When things settled down to where I was pretty sure we would not be impaled with flying tree branches, Atina watched anxiously as I slowly and deliberately donned layer after layer of mountaineering gear: double layer of silk underwear, water and windproof pants, microfleece vest, mask, thick wool socks, high altitude ski parka, ski gloves, and I sure wish I had a pair of goggles but I don’t.  I’ll have to hope that the anti-fog stuff I sprayed on my glasses actually works.

My parka hails from my ski bum days in the ’90s.  One of the benefits of my recent shocking weight loss is that it fits me again, over multiple layers of other warm things. Yay!

The hood of this parka snugs up into a visored helmet, thanks to a system of drawcords that don’t even get in the way like some annoying others I’ve had.  It’s designed for extreme conditions.  I love my good old EMS parka!  (Eastern Mountain Sports, not Emergency Medical System)

When I get finished with the ski togs system, not a square inch of exposed skin will remain, with the exception of what gets around my glasses.

Blizzard footwear: a pair of knee high fleece lined rain boots.  Love ’em.

Hiking sticks, because I fall over easily.

Had to kick the main hatch, also known as side door, open, as it had, as expected, frozen shut during the night.  A dangerous shower of icicles and chunks of solid frozen junk clattered off the roof.  I shut the door again to let the debris pass before trying to exit.  Atina bored holes in me with desperate eyes.

When it seemed safe, I opened the door and stepped out into a howling wasteland of grey.  Atina jumped out and made a yellow spot.

Very, very unfortunately, the sky has made layers of snow, sleet, freezing rain, and back to the beginning.  So instead of having nice drifts of light, fluffy white powder, we’ve got….crud.  It’s all frozen together.  Tomorrow it will be rock-hard.  The night time temperatures will be in the teens, with daytime temps above freezing.  That means a melt/freeze cycle that will just create a foot or so of nasty grey ice that would take a jackhammer to bust through.

My nice RV park people plowed out my driveway yesterday, but today you can’t even tell they did it.  I sure hope they’ll help me get out of here after this storm passes.

I wish I’d taken a shower before the storm hit.  I was so busy making preparations that I didn’t get to it.  Oh well, I thought, I’ll walk over on Saturday and get a nice hot one.

Well.  Snow is one thing, but I hadn’t counted on this wind.  I ain’t going out there unless absolutely necessary.  I’ll stay dirty till tomorrow.


Treatments for Bipolar Disorder

Treatments for BP


Originally posted on bleached noise:
At the height of my illness I worked with such intensity that the laundry baskets overflowed, the dishes went unwashed, the children and the groceries had to be collected by someone else, and I avoided all contact with the outside world. intensity + introversion = deviance It occurs to me…

The Questionable Status of Dick’s ‘atband

Flat, or smoking? Bandless 'ats.

Flat, or smoking? Bandless ‘ats.

Remember that bit in “Beetlejuice”, when two of the main characters happened across “The Handbook for the Recently Deceased”? It would be lovely if such a handbook exists, although odds are I’ll treat it like I do most magazines: ie, read it back from front, flipping idly through, distracted by pictures, and missing important things.

Such as, for example, directions to The AfterWorld (1): “take the first right after Valhalla, then the second roundabout after the Summerlands, then two more left turns, and you’re only 520 yards from your destination of Da Big Library in Da Sky”. (2)

My husband recently gave me a second hand copy of “The Yorkshire Dictionary of Dialect, Tradition & Folklore” – yes, there is a connection here, so ‘old your ‘osses, and whatever you do, don’t choose that sliproad, you know, the one which leads straight to the Discount Warehouse of Disenchanted Duvets – which among many other fine & spiffing phrases, tells me that I can express my bafflement with something – let’s stick with duvets, pesky creations that they are – by describing them as “as queer as Dick’s ‘atband”. Or, for simply sublime bafflement, “as queer as Dick’s atband ‘at went nine times rahnd and still wouldn’t tee”.

Tee me Cheribim down, lass.

Tee me Cheribim down, lass: tha can make a better choice of ‘at.


If there were such a handbook, or indeed dictionary & phrase book for the recently immigrated, I for one would have been as “pleased as punch” to receive one. A phrase, incidentally, seldom used on the shores of GreenandPleasantLand, or indeed I suspect by Americans below the age of 50, who are too young to remember when Hubert Humphrey ran for Pres (just before or after LBJ, as best I recall).

If I’d known that phrase about the ‘at band – which, according to the “Dictionary”, may or may not have belonged to Richard Cromwell, the didn’t-do-very-well son of Protector Oliver, of army fame – I would have said it about approximately three-quarters of what was said to me in the first 18 months to two years of arriving here in S Yorks.

To spend your first time in your local chippy having the menu translated – what, in heaven’s name, was a chip butty? and, once explained, why? ( a French Fry sandwich? Surely they jest!) – is a bit of an odd way to be introduced to your local fast food joint.

Fish, no chips.

Fish, no chips.

My American-to-English-to-Yorkshire lessons had barely begun before my employer threw a spanner – which by then I knew was a wrench – into the language works, by giving me a job which involved ringing up ex-steelworkers in, of all places, Motherwell. Figuring out what they were saying was not helped by the fact that your average Scottish ex-steelworker was typically around 50+, treated the phone like a tin can on a string, and need or perhaps simply wanted to ask to ask his missus the moment the conversation got a bit sticky.

Said stickiness was not helped by the fact that if they said “such-and-such place is only a wee village”, I would then mentally drop out of the conversation, and say to myself, “He said ‘wee’ for little! I can’t believe they really say that!”

Meanwhile, the Scot on the other end of the Sheffield-to-Motherwell tin can had managed to direct a question to the wife, receive an answer, then return to our chat: a chat for which I, unfortunately, had lost the thread. Or string.

Despite evidence to the contrary, nationalised industries can display a sense of humour. No sooner – perhaps two or three years – had I got sufficient grip of Glaswegian English, than my ex-employer took on a contract which involved myself & others answering the phone to a load of recently redundant Welshmen.

(No, not redundant from being Welsh: I don’t believe that’s possible, unless of course the entire country crumbled into the sea, but not before the population was first saved, and then transported, to someplace like, say, Norfolk, or the New Forest. Which, if it were to happen, would almost certainly be some sort of English plot. Or, possibly, the machinations of disgruntled, non-Welsh rugby fans.)

Welsh accents, I soon concluded, are lovely: provided, of course, that you didn’t actually need to understand what they were saying.

Little did my then employers, or indeed I, realise, that it would take the return of “Doctor Who” in 2005, under the direction of BBC Wales, for me to at last make real strides with Welsh accents. Thanks to their Cardiff base, “NuWho” used a lot of Welsh actors. To the point that, suddenly, during a newscast, I turned to my husband, and said, “You know Huw Edwards? He’s Welsh, isn’t he?”

The 9th Doctor rallies the troops, using a rather large wand.

The 9th Doctor rallies the troops, using a rather large wand.

My crash course in Irish accents was thanks to a couple – one from S Ireland, the other from North – who moved into our neighbourhood many years ago. For the first several months, I’d just smile when they spoke, then rush inside, lest there was a question or, indeed, anything more complicated than “Hello”. By the time he moved out, and she began playing the same Westlife song, over and over again, I could understand them both about as well as most of my neighbours. Which is to say, most of the time.

As well as creating new questions in my mind, such as just who the hell was Dick, and what possessed him to wear such a remarkable ‘atband, the “Yorkshire Dictionary” also confirmed some familiar expressions as being indeed local, and not merely British. Such as, for example, someone having a “munk on” – ie, sulking. The spelling, however, confused me. I’d assumed it was “monk”, and had come up with the image of a rather churlish chap who was well known in monastic circles for pulling up his hood, and turning his harrumphing back on his band of brothers.

Baby, it's cold outside. No wonder I've got a right munk on.

Baby, it’s cold outside. No wonder I’ve got a right munk on.

And what of “mungo” – previously only known, if not understood – in terms of “Jerry”? According to my dictionary, it means “clothes similar to ‘shoddy’”. “Mungo” may be derived from a millworker telling a foreman that a particular bit of cloth “mun go”, ie, won’t sell. It also means a “mongrel” dog.


Neptune, during a rare visit to Derbyshire: Chatsworth, 2015.

Neptune, during a rare visit to Derbyshire: Chatsworth, 2015.

(1) As in, the World After This Life. Not, sadly, The World of Afters, aka Sweet Courses for the Dead.
(2) Apparently run by Yoopers, given the use of “Da” for “The” (3)
(3) “Yoopers” = “residents of the Upper Penninsula (UP) of Michigan” (4)
(4) Relax, chuck: this business of footnoting footnotes is bound to stop sooner or later (5)
(5) ‘appen.

The Martian

martianJust saw it. The beginning where Mark Watney gets left on Mars, horrifying! Have I been left behind on Mars? The feeling of watching this man realize he is alone on a planet millions of miles away from Earth, how was that so familiar? Of course, it is the same feeling I have felt when I am in the throes of a manic or severely depressed episode! Abandoned in a desert, no help in sight. Quite sucks your breath out of your lungs. Yes, being left alone on Mars is very much akin to bipolar disorder (BPD). Surviving it requires intelligence, ingenuity, persistence, luck, and eventually help from the outside.

I was watching Matt Damon, playing Mark Watney, and I was so in tune with what he must be feeling. Alone, abandoned, injured, yet he had his wits about him and he survived. That is what we, who have BPD, need. But, awfully enough, bipolar takes our mind/brain/wits from us as well. But we survive, just with the thinking we have left, we survive. The thing to do is to never let it get so far that you cannot think logically or real-ly. With BPD, prevention is worth its weight in gold.

That is what life with bipolar d/o is like, like being abandoned on Mars. it’s that difficult, when you are in an episode, it is just that difficult. It takes superhuman strength to survive. So I congratulate all of us who suffer from this nasty disease and who have survived its ravaging effects over and over again!