Meds

Ever since my life took a bad turn, but (un)fortunately 60 sleeping pills weren’t enough… I’ve been hospitalized for two nights, and put on medication. One pill a day, before bedtime. I was skeptical at first, but I do believe they help my mind. They give it some calm and ease, it’s less busy and messy up there. So I’m grateful for the help I got in the hospital. Every little thing that may help me is welcome. I’m willing to work on it myself as well.

Am currently reading a Dummies book about Asperger’s Syndrome. Bit by bit, reading all I can so when I’m finally in at the Radboud psych help, I’d rather be well prepared. Knowing the issues I wanna tackle should be helpful and handy, right?

Sorry short blogs for now. My concentration is bad these days, as I’m oh so tired…

But every bit helps, or at least if like to think so. Maybe when I have wifi and can use the pc, I can write some longer blogs. Maybe…

Thanks for your interest in my blog. Dealing with mental illness is hard work, that’s for sure…

Question and answer pt. 1

Does it help me to still see my ex on a regular basis?

It helps me a lot to see my ex to be honest. As I’m trying to work on a better me, learning to cope with my difficulties, and I can ask her about her issues with my problems. As my autism related issues caused her to wish for a divorce. I can show her I’m working on it, I’m willing to learn, to be educated and to use any new knowledge. I really want to tackle the meltdowns. I really want to show her that she still means so much to me, that she can see I’m not just sobbing in a corner, promising change but not doing anything. I hope she can see my work, my efforts and eventually, that she can see me and my hard work (and hopefully paying it all off with me changing and hopefully getting her back).

Currently reading chapter six “Enjoying life with Asperger’s Syndrome” of the “Asperger’s Syndrome for Dummies” (UK edition) book. It is about learning more about yourself and also about the sensory overload meltdowns. And those meltdowns I need to tackle, they are my nemesis.

A funny image to lighten this difficult topic.

Sadness

Much has happened, too much to mention in this post. I lack the concentration, the courage even, to write it all down now.

But a lot has happened and it’s not good. So much negative stuff and I’m having a major difficult time dealing with it.

I’m on a waiting list to get professional help with my autism. As I’ve found out the cause of most of the negative things happening lies within me not being able to deal with my autism. But it’s a 5 month waiting period, so it will take some time, and then some more, before I can finally be admitted to the psych help to learn to deal with my autism.

I intend to start writing some more, as it can help me to cope with things. But for now, I’ll post this little bit of words and see how things will move along. I’m feeling so very tired. Tired and sad.

At this point in my life, I say that having autism sucks as it cost me so much. Stupid sensory overload meltdowns. Stupid brain… *sobs* Why am I so damned tired all the time?

Darker, colder days

WARNING! This post contains my babbling about depression, how I experience it and try to deal with it. It might be triggering for people dealing with depression, so a fair warning that it may be upsetting. I try to write it all as respectful as I can and it’s all about me… But still… 

Yes, the time of autumn seems behind us now, well, we’re officially still in the last bit as winter behins somewhere around December 21st, I believe. But still, the days are darker, colder and wetter as well. And every year, these times hit me hard. When the sun doesn’t show its face that often anymore, when there is more moisture in the air and when the wind starts to chill you to the bone… That’s when my dark passenger comes looking around the corner. For those of you who just stumble across this blog, I refer to my depression as my dark passenger. As it’s always there, watching, waiting for a time when I get weak so it can stike me the hardest.

And of course, this year is no different from the previous ones. I experience more pain due to the cold and moist air, so it’s already harder to get through the day. I have to fight harder to get where I want to go. I have started to go to the fitness a few weeks ago and I push myself to keep on going.

Not my original text, but it really got me and I edited the image to my liking…

Yes, it hurts! If I forget to take some pain medication before I leave the house, it’s even worse. But… Sitting on the couch also hurts. And with the gym, at least I get to feel a little bit better, a sense of accomplishment. Yeah, it takes a lot out of me, more than sitting on the couch. But by trying to work on myself, I am trying to get stronger, to beat the dark passenger, to be able to stand firm when he tries to push me to the edge.

But because of the extra pain, the lack of decent sleep, the disappointment that my hard surgery made things worse than they were…
Ow about that, thanks to my wife and my GP, I got to go to another hospital where they do seem to want to help me, where they do answer questions and take your pain seriously. So that is a plus. I need to wear a brace now, except when at the gym (as long as I don’t use the thumb/hand too heavily) and when doing my hand exercizes. I have to admit, I took it off to type this, as I type with 3 fingers and the thumb kept hitting the keyboard when I had the splint on. And sometimes, I take it off to game. As that is the only hobby I am still able to do, well, do less than I want. But it gives me a way to relax and I find that very important. But it is on during the rest of the time. Even at night. And during the night my thumb often cramps up, which hurts a whole lot. I need to take the splint off then, massage the hand and thumb until it shifts back and then put the splint back on. I am wide awake after that and it often takes some time before I can finally sleep again. Because of the splint I cannot wear my Gear S3 during the night, so I have no data from it to help me see how much I did get to rest. In the end, I may end up needing another surgery, as the thumb is stuck in a painful position and I cannot use it well, so I am hoping that another surgery may give it back a little more flexibility and will take away some of the pain.

Ah well, so here I am, trying to work on myself. But here is also my dark passenger, telling me it’s no good. Telling me it’s time and money wasted away because I can never win. And I know it’s bullshit, I know I should be able to win, to get better, to get stronger. But it feels like it’s fighting against me, against all that, because it wants to really, really beat me. I guess it might sound silly, but for those who are lucky enough never to have experienced a depression, I’m trying to explain the struggle. My struggle at least, as I have no idea how others experience their dark passenger. But I always think that, when I explain the situation best as I can, others can at least try to understand it a bit, based on what I share. If I just say it sucks, well, they will most likely agree but have no idea of the struggle.

Because that’s what my depression is, a huge struggle. And when I don’t get a lot of sleep, when I do get a lot of pain and when my dark passenger tells me that I suck, well, this of course doesn’t help in my relationship, in any of my relationships. I am more cranky, I have more difficulty trusting people, when I leave and people start talking, I just assume that they are talking about me….
I notice the change in my trust towards others, I feel it shifting… But then my dark passenger tells me so many reasons of why it’s happening. And then I start taking notice, yeah I know, I should not have listened, but I was weak and I did. But at a point I almost realise my passenger didn’t lie to me. And I start believing something bad, for the lack of a better word. It makes me more on edge and in a way, it also pushes me a bit closer to the edge.

So, as I mentioned it affects my relationship. I get into disagreements with the wife more than normally. Somehow I feel like everything I try to do, it’s never good enough. Sometimes she says that it should have been done differently, and makes me angry and sad. As I tried and I wanted to help. It makes me angry that even if I’ve done it differently, it doesn;t mean it wasn’t good anyhow, or that I did it wrong on purpose. And it makes me sad because I spend time on trying to do good and in the end, I could have used that time differently. I could have used the energy I needed for it differently.

Not my text, but I saw myself in it and edited the image to my liking.

I know I am dependend on her, I know that is not always easy. I am not allowed to drive with the splint. Of course I can take it off, but still, if something goes wrong and they find out I should have been wearing it… It can still be bad, also insurance and money wise. I know it sucks being dependend as it also takes away a part of my freedom. I already need help when things need to be done by phone, as that really freaks me out and I can’t handle it. When I can send an email, it makes it easier on me.
I know my wife needs to take time off from work time and again, different medical reasons every time. Now, I need weekly appointments at the hospital… I know it also costs her energy and time and it’s not like I like being in this situation… I would have loved for the surgery back in June to have gone OK, instead of the shit I am in now. The shit I drag her in as well.

There are many things I know, but I can’t change even if I wanted too more than anything else in the world. And some things are influenced by that stupid depression. For those of you who have never ever experienced a true depression, I hope you never will. It comes over you, dark and gloom, trying to drag you down, trying to convince you that you’re a waste of space. And someway, somehow, you start to believe it. Every thing that goes wrong, it can be as simple as a knot in your shoelace, shows you that the passenger is right. “I can’t even untie my frigging shoelace.”

As I mentioned, I know I always get like this, even though I know it’s coming, it’s waiting for me. But the increase of pain is a powerful thing for the depression to work with. But I keep having doubts. And they are strong. They keep telling me I am not good enough and that people can and will be able to do better than to hang around (with) me. I will only drag them down, slow them down and make them anything you can imagine that is not positive.

One side of my depression is keeping people at bay because I know I get more difficult, more cranky and harsh, and if I keep them away I can’t hurt them. The other side is that I am scared that people will shun me, that people will abandon me, that people will find other friends and totally forget about me. And this is, for me, the most frustrating bit. Because by pusing people away, in my opinion to keep them safe, they see me pushing them and they turn around and think “I can do better than that, she’s not worth the effort”. It’s a downward spiral and it’s the most difficult bit for me to deal with. I am ashamed when I am at my worst, even though I know it’s mainly the dark passenger taking me over because I am not strong enough. But I am ashamed and I don’t want others to see me when I am like that. But I also need people to help me get out, to beat the passenger and to see the positivie sides again.

Again not my text but I found it meant something to me, so I edited it to my liking.

When I do sleep, I know I have many mightmares. I can never really remember them, but waking up scared and sweaty is never a good sign. And I am most scared that I will get out of bed, go downstairs and find I’m all alone. Find my wife’s wedding ring on the counter with a note that it was too much to handle, that I was too much to handle, and she found someone who could treat her like she wanted, like she needed and so she packed up and left… That’s the only bit I remember, the feeling off loss, of loneliness and fear.

And as I have stated many times before, I know I’m not perfect. I know I make mistakes. Even though I don’t know I made them, as some things I see and experience so differently from others (NT people mostly). I know I am not the most easy person, I have a manual thicker than the Lord of the Rings trilogy. But I am trying, even though my depression keeps me back, even though the lack of energy keeps me back at times. I’ve been on the edge so many times, even counting the sleeping pills I have, hoping they would help me sleep for ever… But I do know that I have some thing to offer, even though I can’t always name it when asked for. I try to do all I can in the household, I try to be there for others, I try to be a good hoomum for the doggies and to be a good wife. And I know I fail at all of those miserably at times. But if I give up, if I don’t keep trying, it there is nothing left for me to fight for anymore, then I know the dark passenger will eventually win…

PS. I am sorry if there are many errors, typos and spelling wise, but I didn’t have spellcheck and my headache is begging me to leave the bright screen. Hope it made sense anyway and thanks for reading this far!

 

Saying “no”

Often I have given both myself and others the advise “stand up for yourself and say no when you can’t do something asked/told”. I know it’s the most difficult thing to do, as most of us feel an obligation to always say yes. A need to feel liked, a need to feel wanted and maybe even needed. One could say these needs lead to selfless acts of kindness, as we think those are the way to get that status we desire.

And in a way, it will get you there. But to what cost, you can ask? How far are you willing to go to please everyone around you? And also wonder, how far would those others go if you were to ask them for something? Are they as willing to please you, or are they more of the taking kind of people? Because those people are not the best ones to have close to you.

Because I was always different, I felt like I needed to change myself and do lots of stupid things to be able to fit in. As a kid, you don’t see that they are not liking you for who you are, they are temporarily liking you for what you pretend to be and all that you offer to do for them. As you grow older, you are so accustomed to please others and to let yourself fade in the background, that you feel incomplete. You feel like you are not who you were and are supposed to be.

When you grow up, and look around, you will (most of us at least) redefine who you are, what you stand for and what you wish to receive and give. This will lead to breaking up of friendships, because those are so accustomed to you being the person they like you to be, that they can’t handle the change you’re going through. Some people might stick, as they really care for you and see that you need that change in order to be happier.

And then, you need to learn to say “no”. No to yourself first, as your inner you will keep pushing to please others, as you are so used to doing. It’s a real challenge to say no, especially if it is to someone you care a whole great deal about. Because saying no can feel like you are letting your friend down, like you are not willing to help out when asked.
But it could just be that you can help, but not at the asked date/time. What I do in those situations, I say I would love to but I can’t do it on the asked moment, and then I offer the different times/dates that I would be able to help out. That is an easier way of being able to say no, but unfortunately, not always the option you can go for.
When you have to say no for different reasons, it can (and often will) be harder.

Not only for you to say “no” and probably having to explain yourself, but also for the person you said it to. They are accustomed to hearing you say “yes”, jumping at each chance to please (perhaps?, depending on how your relationship is) and always being there for them. I often feel like I need to explain it. Some friends know me well enough to know how difficult saying “NO” is and accept it without issues. Some friends have more difficulty in understanding my situation and they need some explanation on why I have to let them down. And if they can’t respect and accept it, it’s not my problem. I already have enough issues, hence the need to say no every once in a while.

But when you say “no”, when you ask for another day/time (when that’s an option) and people don’t accept it (for what ever reason they may come up with), that hurts me. I know I am difficult, I know some days are better for me than others, but I also know that I’d like my wishes respected. If the need to ask for something is there, then that means it will intrude on me one way or another. Pushing through, whatever reasons you may have, making me subject to it, is in my opinion, very rude. Even if it’s the slightest inconvenience for me, you did ask and I did answer, so please respect. What in your eyes may be no trouble or inconvenience at all, may be huge for me at that time. I might have an anxiety issue, I might have so much pain that I need to be left alone, I will have a good reason for saying no at that given time. And I will be able to explain why I say no or ask for another time. So please, accept it.

I am still dealing with all my illnesses…. Some days, walking goes well and hardly hurts, so I may look OK. The next day, my nerves may be firing shots through my leg and every step is so painful, I’d rather not walk… That’s the difficulty with Fibromyalgia, it’s never stable, it’s never sure. Some days I have less pain, still enough to need Tramadol and such, but then I’ll be able to move more, do more. Those days I try to make the best of. And other days I am feeling so much pain, I am getting depressed and angry and sad and just want to be left alone.

It’s never really easy to say no to someone you care about. But sometimes it’s the best thing you can do, to be honest about the situation and to be honest to yourself.

And now my hand is really tired and painful of all this typing, so it’s time to share it with you all and chill out a bit…

 

“Find something else to do”

When you are home alone a lot, people always assume you’re lonely, isolated and in need of socializing. You need hobbies, you need to go out and make yourself useful, you need to be among the people. Well, people can assume a lot, but without knowing the situation completely, their “well meant” advice is worthless.

As I don’t mind being home alone. It’s a place where I can feel safe, be free, let down my guard and mask, don’t have to make a lot of effort to (pretend to) understand what is going on around me. I don’t mind being alone. It’s less difficult than being surrounded by people, to be really honest.

But, I used to have hobbies, things I’d love to do that gave me a good feeling about myself, a feeling of satisfaction. And due to my failing body, I had to give up several of my hobbies. But no worries, I still had others to keep me busy, to keep me entertained. But now, with that frakking thumb, I have to give up even more of those. And that sucks. And of course there are those that tell you to find new hobbies, other things to do. Well, that’s just it. The things I did were the things I was interested in. Otherwise I would already have shown an interest in the other things I would be able to do. But I am really not interested and, to say it frankly, I could not even be arsed to try them out. They are not in my interest and I can’t see me doing those other great ideas you have.

I know people with Autism can really bite into certain subjects and be (almost?) obsessed by them, with them, and have a very narrow vision. I do have that trait in me, but not as extreme, or so I’d like to think. That’s why I have been enjoying those several hobbies for so many years. And now, I can’t imagine holding a guitar and strike an easy chord on it. I loved to go to the fitness, but that’s something I had to give up ages ago. I love walking, but there are days when every step feels like needles and pins. I like to game, PC and Playstation, but with that wretched thumb… Even typing this blog hurts my left hand and I make so many mistakes that it seems to take me ages to write a simple post. PC gaming is not an option, yet (hopefully). I do try to play some games on the Playstation, but often things mess up because my thumb just won’t make that needed move. Or the whole hand cramps up and I need to quit, even though I was not done yet.

So I am not looking for other things to do and I am feeling sad for all the things I already had to let go. I am trying to cope with giving up even more, slowly resizing that some things will never be a possibility again.

I am fighting with the damned pain. Every day, every moment, I can’t remember not being in pain anymore. I notice my thoughts drifting away to the only options that I have left. And those are the ones people have difficulty talking about. Painkillers don’t do the trick, although I have not gotten the heavy stuff yet, and therapy also helps a mere bit. Without the painkillers and physical therapy, I would have long since given up.

I try, even though it might not be visible, to adjust. But there is so much that wants my adjustment, it’s too much and not possible. It freaks me out, throws me backwards into an anxiety mode and I have chest pains and difficulty breathing, trying to get back a grip.

I have to deal with this weird world on a daily base. People who just don’t say what they mean, but they think it sounds more sophisticated when they use all these expensive words, and use many of them…. And in the end, I am lost as there is too much information. I try to pick up the right stuff in those situations, but I notice it’s a whole lot harder than it seems. I just find different things interesting, I see different patterns and well, yeah, lost again in the world of words and figures of speech and all.

I guess I used to be able to deal with this better, but ever since my body is in need of more energy, I don’t have any left. And I don’t have the interest I once had to appear “normal” and “socially acceptable”. It’s wrong that I can never be myself because it’s “inconvenient” for the NT folks. The society keeps expecting people to adapt to it, to the way of the most, and they can’t imagine to have to stop and think about others for a while. The economy works 24/7, it’s all about production, speed and moving onward and upwards.  Those who can’t run to keep up stay behind and in many ways, even get penalized for it.

So well, yeah, that’s one of those days where I think many swearing words, where I wonder if that way out is worth it, where my head is filled with doubts and the dark monster is grinning wide in the shadow… Only it’s white teeth visible, giving a warning that he is getting closer.

I wish it would not be such a bad thing to see things differently.
I wish there would be a society in which people were allowed to stand still, look around and see that differences aren’t always bad things.
I wish people were more open to other views, which might not be the most mainstream and accepted ones, but they may certainly be word some time to discuss.
I wish people would not expect me to adjust to them, not knowing that I can never achieve all they expect. It’s draining me, making me feel worthless and too different to matter.

I have many wishes but one of them, I can’t voice. No, not because it’s that thing, it’s because it’s something that I know will never happen… It’s a mere illusion and not worth keeping a hold on it, as it only makes you crave for it even more…

You still want to know it?

I wish people with disabilities could be more easily accepted.

There, that’s it. I might look like a normal person from the outside, but looks can deceive and they don’t tell of the inner daily fight.

I really do try to make the best of it. I do try to adjust to I’m not such a great bother. But with the little bit of energy I have, it’s often not enough to deal with it all and I just break down, too tired, and think f*ck it……

Sorry, not sorry?

WARNING: this might contain triggers for some readers, concerning depression.

Yeah well, what if you’re so depressed that you can’t see a way out?
What if you are in so much pain, painkillers don’t even tickle it in the slightest, and you can’t see any other way to make it stop?
What if your mind is so overloaded with images, thoughts, words, that you long for a minute of silence and rest?
What if you have forgotten what it is to feel good, because it’s been too long..?

Many people dealing with (severe) chronic pain and/or mental issues/problems might recognize one or more of these questions and ones they have asked themselves at times.

Depression is a many faced monster. It can hide in the shadows and then jump out when it smells a vulnerable moment. Many people with depression have a collection of masks ready at their disposal. Because hiding it seems the best solution for many occasions. It might be shame that makes you hide it. Or maybe you don’t want to get any more unsolicited advise. Or it might just be your own damn business and they should be kept at a distance.
As said, many faces are associated with depression. On the masks and also behind them. But depression has patience and is in no need. It knows there will come a time when you are not prepared, when you left the mask at home, and then it will know how to strike. And strike you, it will!

I’ve been dealing with many issues for many years now. As some of you longer time readers already know. It’s a huge mix and also a huge mess, if I may say so myself.
For the newbies here, I will give a short list of my daily dealings: Asperger’s Syndrome (Autism spectrum), ADHD, Fibromyalgia, New hip, Tinnitus, Raynaud’s… And 3 months ago, I had hand surgery and that I wish I had never done. As it only got worse instead of better.

I’ve been dealing with pain for many years. I’ve been feeling different for even more years. It took quite some years before I finally got tests done, and at age 31 I got the ADHD/Asperger’s diagnosis. 3 years ago I got the Fibromyalgia diagnosis. And ever since that one, life has been a crazy rollercoaster ride.

I had to call in sick at work, as I could not deal with it anymore. So many painkillers and I still was in so much pain. We’ve been “fighting” for the last 3 years to get a disability pay for me, to get a offical paper that states I am in no shape to contribute to the working world. It’s been hard, it’s been energy absorbing, for both me and my wife. I won’t say either of us had an easy time, as we were both fighting for the same cause.

And after 3 years it seems like they have finally seen some light and permitted me an allowance each month. So when that burden fell off, I thought I would regain some more energy, as I didn’t have that fight anymore. But I, unfortunately, was wrong. That energy never came back. And I felt down.

Then I had that surgery and I was so positive. And now, with the pain and loss of even more strength and movement, every day I look at my left hand and feel so many emotions. Anger, pain, disappointment and an immense sadness. Every day there are several moments when something goes wrong and I curse and wish I’d never had that surgery done…

It’s hard for me to be happy. I feel a sort of darkness in me and know my dark monster is watching me from the shadows. I sleep badly and when I finally do sleep, I have many disturbing dreams. As I never seem to remember my dreams, I merely wake up with a feeling and bathing in sweat.

I try to keep going on. Doing the chores that need to be done. Doing the chores that I can do. But I am missing some of my hobbies. I had already given up some and now I need to set some others aside as well. Not sure for how long, but at least for now. And that makes me sad and angry, as my hobbies normally gave me some joy and energy.

Because I feel bad, my dark monster starts whispering to me. I am not worthy, my opinions suck, my life is meaningless…. All the little whispers, all the nudges towards that shadow, that darker side…

I feel like I’m living on an edge, one step left or right would have major results. As when I step the wrong way, well who decides which way is wrong, to be honest, it’s over.

People tell others to look at the bright side of things, to keep faith, that good things and times will come shortly. It’s all well meant, but it also shows that they (luckily) have never felt like you do.

I never have a silent moment. My Tinnitus is beeping 24/7 and it never ever gets quiet. It can be “masked” during daytime, as in be a little less disturbing, when there is music or TV sounds on. Talking can go either way, depends on the surroundings. I never feel rested. My brain works overtime and never seems to be able to slow down. Thoughts need their attention and when I try to ignore it, it only gets more persistent. I often have major difficulties understanding the people around me. Their “oh-so-easy” logic often sounds like hocus pocus to me. And when I do try to explain my logic, people can’t handle it and drift off. But that option doesn’t seem available the other way round. I just need to listen and understand what they mean. And, also, I need to just agree with their reasoning. Even if it does not make any sense at all to me.

I never have a moment where I am not in pain. It can be “simple” muscle pains, but also nerve pains, among others. I have some heavy duty painkillers but they never seem to get that damned pain away. It can soften the edges but never do I feel like “oh, THAT’s what it feels like to have no pain”, as I could not imagine such a moment anymore. And yeah, I will need to learn to deal with it. And at times people think about it and understand when you have to cancel on something or when you can’t do stuff. But some days, you can do more (or less) than on others, so it’s a variable thing, and many outsiders have a (huge) difficulty in dealing with that. I often wonder how they would deal if the cards were dealt in another way and they would have to live with my pain and all….

So yeah, there are times when I really wonder if it is all worth it. Especially when the monster’s whispers are getting louder. I wonder how long I can still take this all, if there will ever be a moment when things change for the better… As yeah, I can “learn” to live with it. If I don’t, I would have to drop dead I guess. And that is not “just” happening. But I do wonder what it would be like… And you can call me selfish for it, I don’t care. You cannot judge someone until you know what they are really dealing with…

And I feel like I am a burden to others. Because I cannot cope in this world by myself. I cannot do all that I would need to do to manage it. So I am a burden. And because I see and experience things differently, I need more explaining and/or I can be stubborn in my own world. I know all this but it does not make things easier. On the contrary, it even can give the monster some more strength.

I’ve been told that if I had so many issues with all the things around me and such, I could just jump off a bridge and be done with it. YEAH that is exactly a thought that has been going through my mind when the monster starts his whispers again. Maybe I don’t have to wait too long, and the orange monkey will say something to anger mister koe loe yuk and they will just nuke the holy cannoli out of this world and be done with it. But yeah, I often wonder if this world really needs me and more even, if I need this world. As there is not that much understanding for those that are living a different life, for those who see the world in a different way, for those fighting each day to matter.

At this moment, I’m trying to stay out of the shadows. I am trying to keep myself occupied with many things that I still can do and I like to do. Even if it’s a short list and it starts to feel insufficient.

Anger at myself for slowly seeming to lose the battle, angry for the lack of energy.
Disappointed in myself that I am so weak and stupid.
Sad for all the pain I need to bite through every day.
Tears when no one can see me…