Letter to you

What have I learned about myself lately. 

I know I'm difficult.
I know depression does sometimes take control of me, and I do things that are mostly meant to cause me pain... sadly I cause pain to you too at the same time.

I use to be maniac so this depression game is new and confusing to me.

But. I'm also smart, everyone agree on that. I'm kind, not everyone agree on that, but most does. I take care of people around me. I protect them.. I protect them from me too, and that is something I try to stop doing, because I have to let you see the full me.

I'm funny, I've been told that more than once, I'm half mad funny, I see fun in things that others see sadness.

I'm not slick romantic guy. I don't know how or even want to dazzle you with my words. I tell things as I see them. I don't have ulterior motives.
If I say you are beautiful, I say it because you are that in my eyes.
If I say you are funny, it's because you make me laugh or at least smile (and believe me, that's not easy task).
If I say you are smart or brilliant, that's because I've had long and enlightening conversations with you, and you have made me see new things in things and situations that I thought to know already.
If I say fuck off. You've pissed me off. But I still might like you in generally.
If I say I will brake your legs. Then I don't like you at all.
Also If you get a feeling I'm laughing at you... I most likely am.

I don't enjoy be among people. But I do because... well. I don't know.. I don't want to be complete hermit, I just enjoy to be alone or with only few important people.

When I love you, I say, I love you. I hug you, kiss you, if you let me. I don't try to take that by force, nor with slimy words, not by acting something I'm not. If me don't work, then we wont kiss.

I love many things, there' s list here, in blog about all the things, that I have found this far, that I love.

I enjoy many things. I enjoy good books (well, audiobooks, since reading got hard), movies and television shows. I enjoy art and craft, specially clay. I'm really talented with my hands. In many ways. Even that they don't always work.  I enjoy nature, walking there, sleeping there, hunting, gathering eatable stuff.
I enjoy spending time with people I love.

I wish to have a dog someday again.

I hope to move real countryside someday.

I live in constant pain, sometimes it makes me sad and bit bitter, sometimes I'm overly happy because of it. Mind does funny tricks on me.

I don't drink. Alcohol is not a friend of mine, and I'm done walking on the line.

after all... I can't be anything but me.
and I hope you can accept that.

Have a good day. 

I fucked up again.

I know it's the stress that make's me have this lapse, but still it hurt me. It hurt me to see the look in my family's eyes, it hurt to hear the words and all the time I can only say and think. " I know!"

I say stupid, hurting words. I don't mean to, I don't even realize those might be wrong words, not before I've said them and then there's that look. Something in me don't let me even apologize right a way, no I need some time to beat my self up first, then I can apologize and even explain.

I'm such a mess right now, even that my medication does take the worst edge off from both ends, but it doesn't help with adhd, and I'm not sure do I want to start different medication for that, last one didn't help much. Maybe later, when I've gotten this fucked up bipolar disorder back in my control... well hopefully even bit more.

But this is hell at the moment. I don't know really who am I. I am uncertain about everything, even how to make a fucking food. I can't make up my mind in little things or big things. I've lost my self somewhere in this hell that started over year ago when something triggered something in me, and everything went to shit. I can be calm on the outside.. well kind of.. but inside me there's a war going... or maybe it's more like earthquake and global warming mixed with alien tsunami.

I try to hide my uncertainty all my mess inside, I feel ashamed of it, so I act like I'm the superman or something. I try to hide the feeling of being nothing so hard. I'm quite sure that this actually just make things worse, both to people around me and me. But I don't know how to stop... yet. I will find it. I will.


I need to cry, but cry don't come. I need to sleep, but sleep don't come.

Yet.

I know I'm getting better, the medicine is working enough for me to be hopeful again, but I need help to get my self back in shape, and currently the professionals haven't been able to help me much, because, I'm in line to get more examinations to know what is wrong with me and maybe then they can help me get better.

But what I feel is.. that I'm lost. Lost in me.

I try to unload myself on.. well.. here. I write novel/s. I paint, drawn and hopefully get to make ceramics again too. I study Spanish, just because. I dream to at least try to get in university. But.. most of all I dream to find my self again, to be able to be great father and great husband.

I love you wife.
I love you offspring.

Thank you and Sorry.

Never give up, Never Surrender. 

"yeah, but I'm used to work in pain"

"yeah, but I'm used to work in pain" - I said that today (or something similar, can't remember exactly anymore.) when I was talking with wife about which of us should drive to town to get the offspring. She wasn't well, and I had all-body-pain on (because I had to stacking firewood... a lot.. because I was at home alone when firewood came and naturally there was snowing.)

But seriously, is this my life? I'm use to the living in pain? I'm willing to do things even that I'm in pain? I'm so much in pain, that I don't even care anymore.
Damn.. Those rare occasions when I don't have pain.. Well, I don't even realize it.. I'm just wondering why I'm so happy.

I've been suffering one or another kind of pain about.. 11years I think.. Back about then I broke my back.. there's some invertebrate disc that's not working and therefore my right leg is in pain and doesn't work as it use to. Some nerve is in constant pressure. Then there's this nice and friendly fellow, fibromyalgia. Latest pain source has been my hand(s), now.. years ago one doctor took some x-rays and told me that my wrist are full of tiny fractures. And they would not do anything about it.

SO... now things have taken new turn.. My right hand, little finger and ring finger(?) started to be in pain, didn't work well and were numb.. all that at the same time.. So I was first thinking it was something to do with the wrists .. but to my surprise doctor actually took some time to look and done some test.. then she told me, that she thinks there's (again) one nerve in pressure.. and if that's the case, it can be operated (unlike my back, there Doctors wont touch as long as I can walk and control my ... plumbing.) So.. Doctor nicely did send me to this.. ENMG test.. some horrible crap with electricity. It was painful and all the way felt nasty.. but hey, if it helps to find the cause.. go for it. So I took it like Me.

Then.. next day they called me.. that they need to do more tests. this time with needles.

Anyhow.. the thing in here is that.. I live in constant pain. Some days less, some days more.. but it's almost always there.. yet.. People around me (well of course the closest ones do get it ) don't see it, because.. I'm quite healthy looking guy. Take care of my self, have more strength than many.. because I must, so that I can continue work.

But oh those faces when I walk with my cane on the streets.. People do have serious problems with me. Or when I have ... hard day... and wife is the one who carry the groceries and I walk with nothing or maybe with the cane.. or.. it might be me.. who thinks people watch me.. because I feel bad.. I have strength, I could do some much.. but the pain... I can take over it for a short times, I can, like I did yesterday, Stackinf the firewood under the roof, if needed, but I will pay to price. Today... has been hell. My back is in pain and my hand is in pain.

But...

When I saw that wife was not well either... I realized that.. Yep. I'm so use to this pain, that I can drive car and get offspring home. (Well, wife deciced to come along, and it was good, because my hand decided to go all numb and I could not drive well anymore... so it was easier to ask can she drive back home)

Can't art much

I don't know, is it the constant hopelessness or the new medicine, or something unrelated... but lately I have had no interest to do art.

Or.. no, wrong, I do have interest, but... lack the will. I know it's has quite a lot to do with my pain, It's hard to hold pen or brush when only couple of fingers work, and rest cause pain every time you move em. But I'm hopeful the Doctors can do something about it, at least they had some ideas what might be causing it, and next month I have some ... enmg thingie.. It involves electricity, that's about it, what I know about it. 

The hardest part in this is, that usually it has been art, that keeps me sane, I've been able to stuck all my pain, darkness, sadness and joy in my art, so now I've been forced to find other ways. For that there should be therapy, but because Psychiatrist are bit puzzled what is making my mental state so ... unstable, and if this latest drug doesn't help... well it's hard to start therapy when no one knows for what and how.

I do have couple mixedmedia ... let's call em paintings, under work, I work with only one at the time now, mostly because it's so slow, but also because I try to teach myself to concentrate on one thing at the time. Before I worked like,, ten or more art pieces at the same time.

I've noticed also, that my art has changed a bit since the pain and burnout. I use to make semi realistic art, animals with humorous twist and pencil drawings. Now Most of time I make ink-dropart. That means that I just drop ink on paper, let it try and then I stare it so long that I see what it want to show me, and take different tools to get it out.

My art is not a big seller, but I have... customers around the globe, so I think one could say I'm successful, because I've managed to cause emotions in humans, by my art and even that I would love to make a living by art... that is actually why I ever even let others to see my art.

I'm so much hoping to get on the winning side of this pain and mess in my head, because I feel I have still so much stories inside me to share, they are just... stuck at the moment.

Stuck in me, because I can't find a way for em to get out. Writing these's blogs does help a bit, even that this too does hurt my fingers.

EDIT.. days later when I started to write this post.
I have actually painted, one day this far, but whole day is way more than the usual 5-10min now and there.

Even that it was just one day, it mean a lot to me, I have hope that someday my art will get free again.

Why I write the blog?

For me and for you.

This force me to think more, find the words I've lost, inspect modern me, am I more the real me, does my illnesses fuck me up and how and how to fix or reroute things so the illnesses don't ruin the good around me.

This is therapy to me, clear my head, especially when I'm in bad place.

I try not to pour my thoughts to my loved ones so I write em down, they read em if they want. But I think so much and observe myself all the time that I need to speak it out somehow.

And because when I thought to start writing a blog, People were like.” YES. and please write it in english” I can’t be sure, but I think it might be that… I have couple nasty “illnesses” that are quite common, but still too much of a tabu and people want to break out of it and it’s always good that someone else does it first, no matter how poorly it’s done as long as it’s understandable?

I’ve been told, that my writings help people close to me, understand better why I behave so odd ways, but also people who don't know me tell it help them to understand their own loved ones, friends, bosses or neighbours. I have done some talking to little groups about this, mostly to parents of adhd children's, and there I get a lot that I really help, it’s easier to share the light in live situation when You can see the other’s and how they react to your message. Here, I don’t have that powerful tool, I hope to get messages or some words from you few readers, that am I really writing just for myself, is my english too hard to comprehend. I was thinking to write in both English and Finnish, but to be honest, I can’t keep me in one subject so long that I could do a translation either way and I’m bit shy to ask anyone to do the translation for me, because I use really weird and funny ways to express myself and then I would have to explain myself all the time so that someone could do proper translation. So I keep writing in english and hope for the best.

I live in difficult time, we are trying to find me working medication for two of three “illnesses” of mine. My old medication for bipolar disorder fall down because of fibromyalgia medication OR doctor suspect that it had never worked good but that medication made my brains bit sticky so I just didn’t even realise it. I have now 4th new medication under testdrive and… well it’s not working good either and my doctor is changing and you see the need to open up somewhere.

I have, thankfully, awesome family, quite understanding workplace (where I have been on sick leave 4 months soon) and talented professional to talk to about these. But for sure, I would slowly like to get this first problem, Bipolar disorder under control now so we could continue to find something for Fibro also, because that my readers, that is tiresome illness.

But in the meantime I keep doing art, If you are interested of my art, here’s link to my “homepage” and writing these blogs.

Feel free to share or whatever my texts, I don’t mind if I could make a living by helping others ways that I can do. Currently all I seems to be able to do is writing blogs, and making art. I’m not in shape to do those live “talk” sessions no matter how much I would love to be. I have to think bit selfishly now and get me on shape again, shape where I can give hope to people who come to listen me, not the opposite.

So yeah.

Jani

Fibromyalgia

If you are not familiar with this damned thing, here's link to one of the many more official places to gain more knowledge.

To me this is a new fellow-traveller and I wasn't planning to do any writing about him yet, but then lately one evening he jump out of the closet suddenly and was like “did you miss me? “

I was actually driving a car then, felt fine and second later felt like burning rod was pushed through my right shoulder.

As said this is new to me, I haven't even have named the symptoms yet much, except the cottoncandyhead. And that's not originally my idea but something wife used to call when her head felt funny, it just seems fitting to this fibro slow… ThThinkin… Brains… It was either cottoncandy or oatmeal head… hmm yes, I do like to eat.

To me the worst is how it effects on my head. Pain is nasty and so is being tired but.. Pain is old friend to me, since I broke my knee and later my inter-vertebral disc, so only new here was the, how suddenly and random fibropain is.

But even that I've lived with ADHD whole life and struggled with bipolar disorder most of my adulthood.. This is new. See adhd makes my brain reeeally fast, world happens bit like slow motion sometimes. Bipolar makes me think I'm God and second later I'm worthless to be living (bit exaggerated), makes me act like there's different persons inside me even that it's just me changing mind and behavior really fast and many times a day.

But Fibromyalgia seems to slow me down, make me forget things, get me lost in my thoughts, like I really would be paddling trough oatmeal. I have difficulties to make decisions, I'm unsure about everything and I forget a lot, even if I've written it down.

Someday s are so bad that suddenly I just have to walk to another room, away my loving family because I feel so worthless. My brain does not comply my body is in pain and others have to step in to cover me. How can I not cry in these situations. When I see how big of a burden I have become.

I'm tired all the time, I can't sleep without some pills yet even that dream doesn't really refresh me, but I must try to keep up smile and be productive at work and understand what school means.

And most of time I just want to cry, because this is not me. 

I don't have any medication for this, yet. Story behind that goes like this.

I have adhd and bipolar disorder too, as said earlier. When I was diagnosed with fibro, I was given some drugs too, but beside that it did ease a bit of my sudden pains is also secretly mess up my head, and my bipolar medication. I dropped the fibro pills after month or two, because I could see it just made my situation worse, but what I didn't see, is that my bipolar medication didn't survive. I kept eating it, but it didn't work. Now, I believe it haven't ever worked too well, but enough for me to survive, but now, I started to slip back to my egomaniac arsehat personality that I really really hated, and when you added the random Fibro-Zombie there... weeelll.. it wasn't pretty. Basically I was zombie who thought he can do everything and is the king of the hill. 

So now, new doctor. trying to fix me. fist Bipolar, and when that's under control, we dive in to Fibromyalgia again.

Cry

I've been actually up rise in home where crying was accepted even for boys. So I cannot say why crying is so hard for me, has been most of my adulthood.

Lately anyhow I've found myself in peculiar situation that I have urgent feeling to burst into cry. I've had it, nagging inside of me a long time now. It's almost everyday feeling. Couple of times I've drop couple tears but this far that's it. I feel it's coming but something is holding it.

It's really weird, as both because I have no idea why I need to cry,( except that my bipolar medication has failed and I have often pain because fibro, and I'm really tired all the time aaand I worry for others.) and because I don't seem to be able to do it.

I think there's huge mess inside of me, the medication don't work so I've started to do to more and more work to stay sane. I sleep poorly, worry I hurt my loved ones, stress more because tried to keep working too. I've driven myself to the edge again and right now I just wait and hope I get help in time.

I'm weekly having acupuncture to open some knots in me. I'm trying new medication to get my emotions back in balance.. So far not there, but feeling bit better. Just.. If I could either cry or find out why I feel like needing to cry.

I've never been much of a crying game, but know to done so more than ones, specially when needed, so even more now I'm annoyed.

....

What about that another one?

What about the other?

This is something I’ve been thinking a lot, and it’s hard subject because I’m one the the “special” people.
I have little bit of this and little bit of that.
Thing that bothers me so much is … well, to me it seems that professionals, families, friends and people who just walk by forget the parent, spouse, sibling or child. Forget is quite strong word for here, but i feel it fits in the purpose so I will use it.

I’ve read lot’s of different guides for, adhd families, bipolar… fibromyalgia .. Even those that has been written to the parents or spouses of special person and every time I saw the same thing, thing that puzzle me so much. I have talked a lot with doctors, special doctors, nurses, social workers… damn.. even with a priest. I’ve read through internets wonderfully unreliable world and always it comes to same thing.

Every time it’s the same “You must understand your children.. you have to see that your children doesn’t do it on purpose, mean it… Your spouse, father mother, uncle… he doesnt mean it, understand, “

Sure… it’s true… but that’s like.. only the half of the story. All is true but to me it feels a lot like saying.. “You can’t be angry, sad, frustrated.” the guides forget to but in words the other side of the story.
Someone need to say the important another side. Why hardly ever I see words “It’s ok! You will be hurt, you will be angry and sad, you can be angry and sad, you can laugh as much you want.. “
That your loved one “doesn’t meen to do …” does not mean it can’t hurt you, your feelings. Parents , siblings, spouses need to hear it, they need to know it’s not forbidden to be angry and still love your special person. There need to be someone who say these things. Who say “ it’s ok to be angry!” or sad or happy even if it’s not … right moment.
It should be said somewhere , that it’s ok. it’s hard to hate your child, just for a moment when nothing is fine with your special child. It’s hard to think divorce… if all you hear is “ you must understand it, you must love no matter what… they don’t meant it…” Who are these judgemental guide writers who think that Families of Special people can’t have the feelings of them self.

I’ve seen this in so many levels.. I’m special person, I’m father of special child. I have different kind of special people around me in family and friends..
I’ve hide behind “you must understand me, it’s because of my sickness”

It’s true that when living with Special person, you might need to count to ten or hundred.. You must swallow your tears, have moments of anger that scare you and yet still you have to understand. But it’s also true, that you are human, and you have feelings, and you have right for those feelings. You have right to be sad, angry, happy. It’s important for you to have someone who listens and doesnt judge. We all have em, feelings… other’s show them others doesn’t.

I can see how hard it is to my wife. I'm not the man she fell in love. I'm, at my worst, some super energetic, megalomaniac zombie how keep say “ouch” and try to hide the cry. Even when I'm not that bad, something ruines the day.
She can't trust me to handle bills because I might forget it or pay em twice. She can't trust me to remember stuff. She can't trust I read correctly the shopping list. Or that I buy son a buss card. There's weeks that I can't even vacuum or cut carrots.
Goddamned of course she's angry, sad, annoyed and who knows what else. I understand that and I can handle it, she has the right to show how she feels just like every other human.
So basically… here is the thing. I, as quite special case, can't show my appreciation enough, can

So… I don't know.. I just wanted to write this.

Where am I

It's really hard to be, again, in situation where I can't trust my mind at all.

Since I fought and learned the shit that adhd and bipolar did to me, got good medication, found the true me… Life has been better… Not so interesting or colorful but not boring either. But I've been in control… Of me… and haven't had feeling of.. To need to control everything.

Now… When fibro moved in to house, things started to go bad. When I look back, I wish I would just taken the pain, but nooooo I was “ok let's try if that helps”. The medication did help for the pain but also crashed my bipolar balance and I was horrible.

So.. I dropped the fibro medicine.. Thought I was getting better.. But I wasn't.. Slowly I was loosing my mind losing my control, forgetting stuff alot and often, started to stutter more… lost words, strength.. Sleep.

It took half a year for me to start to see what was happening. I asked help. First doctor told me, she can't handle the situation so she moved me to specialist.. I waited time for that over month and slipped worse.. Now.. New doctor was like. “holy fuck.” wrote long sick leave and start to fix medication for bipolar because that is the most acute situation. Ones again professional is wondering how in earth can I keep my self even this well in shape.

How it feels? How you think. Do I enjoy to let my loved ones down because I forget something important that I promised just 5min ago?
Do I like to notice I did exactly the thing I was not supposed to do because things got mixed in my head?

Do I enjoy that I hurt someone's feelings by doing same shit again that I haven't done in half decade?

Is it funny to mix up words together, forget how to do simple things, ask others to read my blog posts for me because I can't make any sense on em by myself?

Do I like to feel anxious all the time because someone said something, i read news, saw kitten, didn't like my mirrorimage, noticed the fat, don't feel loved, love tomuch, rain, sunshine…

And

That's only maybe half of the difficulties in my head at the moment.

I just want to… Get there where I was before. Before this. Be in control of my mind, have good life, job or no job.. If job push me off the edge. Then maybe I can give up.. But until I get my head back.. I can't say. I can't decide. I can't deal with it.

First medication try started well, my brains started to work again but.. Now after month and bigger dose only brains work. It cause tremors in me, headache, difficulties to see, dizziness and felt nauseous all the time. But it help still me to think. So doctor told me to take just minimum dose to keep head working and we started new medication again.

We shall see where this goes.
Sick leave continue.

The final straw that pushed me over the edge

And this is why I am keeping a blog now.

I hate my brains quite often. But rescently specially. I have bipolar disorder, mostly manic, and it makes me think I know it all. Naturally that's not the case, usually far from it. It has been better since I had good medication to help me think a bit more before I yell to world that I'm right. I had good medication. Had.

See the thing is that I have also fibromyalgie. Because constant tiresome pain can be quite annoying or even horrible to live with, I asked doctor is there anything to help with it. Because I live in Finland all natural pain relief and other products that people around the world have got help, are banned but I can get drunk every day and government is willing to support me on that… Back to doctor. Doctor read my papers in and ask my about my other illnesses and then wrote me some triptyl.

First at all.. I got slow.. Zombie mode slow.. So we half the dose. Then, of course I didn't realize it then but afterwards, my bipolar started to kick in. I behave erratic, megalomaniac, jealous, crybaby, aggressive, depressed, overly happy and about everything else that usually don't happen to me in even same year. Almost too late I understood that I was losing myself. Too late because I was behaving really bad towards to my wife.

So I called doctor, who didn't believe me, that I cut that shit out… Even that it did help for the pain.

Months goes by, first I felt I get better, then suddenly I didn't. Half a year later I'm at sick leave, waiting for super hyper psychiatrist time. Had to take time off from job and school to keep my head at bay at home. Month ago, I realized that my bipolar medication didn't work anymore, or I hope that is the case, and I am using huge amounts of brain energy to fight off my politicians… demons I ment.

Last months have been like this. I hardly remember anything, short time memory stuff. I sleep but wake up as tired as I was when I went to sleep. I'm slow, stupid and I forget words all the time. And because I'm tired, I lose my concentration to keep my head in balance and I start to slip to bipolar side. And I hate it.

I hate to feel dumb, I hate to fight my brains, I hate to be tired, zombie, egomaniac. I just want back to there where I was in control of me.

Most of my adult life, I've felt either godlylike or completely worthless.

I wasn't pretty boy as young (never really understood the drooling for good looking humans, to me that seems quite, lack of intelligence, sorry) , my only merit was my fast mind and tongue. Because I've never felt like an… Good looking guy, I've been at least smart, funny and even charismatic (or so I've been told) but lately I've lost it all.

So it's been. Hellish. My self image has always been quite poor, but actually since the beard, gotten bit better :). But because my head is still complete mess, and I've never been able to get strength from good look…I wish I could go back to work, but I'm in apprenticeship deal for, youth worker and I'm not sure can I do that even if I get my head better.