Mind is wandering

•July 24, 2017 • Leave a Comment

Sometimes people say to me I should be out more. Being alone will isolate me. But for me, it’s important to be alone at times as then I get a breathing space and time to recharge.

As I can’t filter all incoming waves of information, sounds, smells, vibration and even touch. And at times, it’s people that cost me loads of energy, trying to keep up, to understand, to follow…

And there are times when I miss some people. It’s hard for me to make friends, to trust people, to have faith in them.

On days where I feel down, drowning in pain and sorrow, haunted by memories that will always be a part of me, I wish someone would notice. A friend would send a text, just to say they were thinking of me. I do post some stuff on Facebook, but the replies I get are often not that much. When I see friends reacting to stuff my wife posts compared to my posts…

My dark passenger is telling me I’m not worth their time. That I am not worth their attention. That I really don’t have friends, but they are merely some people that I happen to know. The dark passenger knows no kindness, wears no satin gloves and goes out of it’s way to make me believe it all.

I know I can push people away when I feel overwhelmed or when I start feeling depressed. I know I can try too hard to keep people around, most often when I’m close to breaking down. I don’t want to be alone at the time when the dark passenger is stalking me. I feel more safe, protected, when I can be surrounded by people that I trust.

But I’ve noticed that lately, I have been feeling more isolated. I try to reach out, but the people I am trying to reach are too far away. They might hear me and choose not to react, my dark passenger whispers in my ear. And they might not hear me at all..

I know I choose to be alone when needed. I know I can push people away when I feel my mood may harm them. But the isolation I am feeling now is not by choice, not mine at least. I know I’ve not been the mose cheerful person lately, but the pain of the surgery is too much to handle at times, even now, more than five weeka after.

Why I am writing this, no idea to be honest. I started this at Facebook, but realized that wasn’t the right platform for this. I guess it’s just haunting me, keeping my thoughts occupied. Ah well, now it’s out, in a way, and maybe it will make sense to someone out there.

Let’s go out with the dogs and then head to bed. Another dreadful day is on it’s way…

Feed the monster

•March 3, 2017 • Leave a Comment

When I look in the mirror, I often wonder what I see, who I see. The answer is really depending on my mood. When I’m having a rare good day, I see someone who has lots to be grateful for. But on days like the one I had yesterday, I see failure and pain. I see disappointment and tired dark eyes that look straight through me. 

On days when everything seems to go wrong from the moment you wake up, most of the time long before your alarm was set… Those days my dark monster is looking around every corner there is, lurking for a chance to attack me when I’m most vulnerable. And those days, I often barely have any energy. The monster knows this as well, and it makes him aware of my weaker shield. 

I know I always carry the monster with me. I have had this “dark passenger” (was watching Dexter, found this a suitable for the monster) for over 20 years now. Many people have looked at it, some more educated than others. And they never really could give the passenger, the dark monster, a name. Well, they could, but there were many variations instead of an unanimous answer. Some told me I had/was bi-polar. That was my first diagnosis. I got lithium and ended up almost killing myself… I read a lot about it and many things did fit, although some I experienced a little less heavy/different. But many treats I really could see in my, my moods and my behavior. Then I had some sort of depression, the next thought bi-polar again… Then I got several other diagnoses, first the ASS/ADHD, 2,5 years later my Fibromyalgia. And now they call it a mix-up of those three. Yeah it’s some form of depression, but not the bi-polar one. But they state that on me having the fibro as well, and I did not have it (maybe I had but it wasn’t as present as it is the last 2,5 years)… So me getting another illness, one being chronic and not really recognized, should make my depressions lighter in some way… I have not been able to believe that, as the way these educated people want me to believe, it’s different than to what I really experience. I have no idea if this makes any sense… 

I have been feeling down a lot lately. Stuff going wrong. Things I was hoping for that got blown off, so major disappointments. Health throwing me more pain and headaches, causing me to sleep less or wake up as tired as I was when I went to bed. It eats me up, slowly, one bite at a time. I get irritated more easily, I feel sad a lot of the time and I try to hide it. If people ask you how you are, and you say “life sucks”, just watch their face. Even me, someone with ASS, can see they are lost, not expecting it and even already looking for a way out. If you say “ah you know, could complain at times, but there are good times as well”, they are a lot happier with that answer. Even though it’s not the truth. And after that reaction a few times, who would not try to hide the truth, even if not to feel so uncomfortable… Because yeah, life sucks at times and when I want to be honest about it, it makes people uncomfortable. Which results in me closing up more, feeling more alone, not able to be honest about my feelings, about my issues, about the struggles. 

The monster knows this, feeds on this, relies on this. I am scared my monster will affect other people. So in a way, when I should need someone to talk to, I will push people away. To keep them safe from my darkness, to keep my monster at bay. To not let them see the real me at that time. When the monster takes over, it seems my ability to think things over is reduced to a “frak it all” kind of thinking. When I am able to take over again, when there is a way yo push the monster into the shadows, I get overwhelmed with a feeling of remorse. Because I do remember all I’ve done, even if I wasn’t in control. 

When the monster pulls me into the darkness, I lose a lot of self control. I do the things I do, but there is no good thought, no angel on my shoulder asking me if I really should be doing certain things. There is no inner judgement at that time. Only a feeling of rage, fear, dislike. Everything and everyone is against me, they’re all out to hurt me and I need to find a way to keep myself safe. 

Why am I sharing all this? It might be a cliché, it might look like what everyone else is writing about depression. Maybe it is, maybe the things that are alike are the recognition points of being depressed. But if you’re lucky enough to have never shared time with the monster, it might be hard to recognize. And if someone in your surroundings, or maybe even you, gets visited by the dark monster, it’s good to be able to see what’s happening. You might be able to ask or give help sooner, as it is easier of there is someone to fight the monster off. But letting someone help you fight it, that’s is a struggle on itself. Because the monster wants you to believe you’re on your own, it wants to you push everyone away. The more alone you are, the more power it can and will have over you. 

I will round this post up now. I hope it has given you a small insight into living with a dark passenger. How is is to never feel really safe, because the monster is always lurking in the shade/darkness. 

If you recognize some of these feelings, please make an appointment with your GP, even just to take about it. If it can give you the help and support you might need (in the near or far future). If you recognize this in someone you know well, please try to talk about it. Or don’t let them push you away easily when their monster is attacking them. 

Thank you for your interest. Wishing you all the best, 

Lonely Wallflower 

Disappointment – in Gaming

•February 20, 2017 • Leave a Comment

We all know it, we all face it at times, we see it in ourselves and in others. May it be people you know, teams you support (and they lose)… Disappointment.


My self esteem is very low. I guess years of bullying does that to someone. Plus never being really good at things, always having to see and hear how others excell while you struggle… I am very happy to know that some stuff I have always had difficulties with, I experience because of (some of my) mental issues. They are even points on the DSM-IV list (sorry, that I know for sure and am too lazy at the moment to check the new DSM-V lists, but at the time when I was diagnosed, those points were there). My eye-hand co-ordination has never been the best and my fine motor skills are anything but fine.

This also is part of the reason I have never been really good at computer/console games. Because I am just a tad to slow, I often miss the window of opportunity, hence I keep failing. At times I could figure out a timer on an event, and be prepared for it. But when playing an MMORPG (Massively Multiplayer Online Role-Playing Game), it’s hard to time things. OK, in dungeons and raids, some things you know will happen, but as it’s less predictable, it gets harder for me to be prepared.

Many games I have started enthusiastic and had to give up because I could not get past a certain task or event. And that sucks… Big time! I am aware of the reason, but the reason is within me and it makes me mad. It makes me sad that I am such a failure. And when I play alone, it’s less bad than when you’re playing with others.

One game I do love and am happy to say I can play pretty OK, is Diablo 3 (Reaper of Souls). Lately I have been playing it more on the PS4, as the controller can be easier for me to handle than a mouse and keyboard. Not all PC functions are available yet, but they’re working on it.

This is just a bit of game play on PS4 I have shared. I haven’t shared a lot yet, but do have a channel on YouTube, just in case I want to share 🙂 If you’re interested, you can follow this link and it will take you to my channel!

But this post is mainly to write about how far that disappointment in myself can take me, as I can and will melt down if it keeps on going badly. Last night, I was in my Sunday weekly WoW dungeon group. And I am so grateful for these people, as without them, I would never be able to experience WoW as I can do now. But they wanted to try the Mythic settings and the last time we tried, we failed badly at the last boss. We were trying to defeat Odyn at the Halls of Valor (links for those who are interested). And this time, though it did go a wee bit better, I ended up dying a lot, again. And it brought me down. Every time I failed to stay alive, I kicked myself in the guts. I was letting my group down, I was not being worthy and well, I guess you all know how we are able to take oneself down completely. And then, after dying again, I broke down. I could not do it anymore. I had been trying to play for a while, while tears were rolling down my cheeks. This didn’t help either as it fogged up my glasses….. But that’s beside the point, as I was very good at dying when I could see better through them as well. I was mad. Mad at the group for making me do mythic while I said I would not be able to. Mad at me for not being able to. Mad at my hands for not being able to keep up… I was mad on so many levels… I cried, cried and well, cried some more. In the end, we gave up on the last boss, again. We decided to do another dungeon, this time a difficulty setting lower, HC, and we kinda aced through it. I loved it, as I was helping, doing damage, keeping alive. That really helped me to see that I would be able to do mythic at some point, but due to my squishy-ness, I needed higher gear to have more health so that would  be able to compensate for being just a tad too slow at times.

My little Gnome Monk, Gnömski

My little Gnome Monk, Gnömski

So now I am on a mission, one I was already on: getting better gear. Unfortunately, my luck is almost worse than my game play. At times, when an item can be used by different people, you roll for it. It’s like an electronic dice that gives you a random number between 1-100. So I am up against someone else, as we both need that awesome leather piece. He rolls an 8, and people start being happy for me to be able to get it… I warn them, telling them about my shitty luck in this game. Nah, no worries, it’s only an 8. So yeah, I type /roll and it gives me… A 6! I think, when it comes to rolling, I win about 1 in 8 items… Same with getting an item upgraded… When I finally get an item, it’s often as good as what I already had or even worse. I try a lot, doing quest lines, world quests, alone or together with my lovely wife… She truly is amazing, as she pulls me through my meltdowns, helps me get calm, explains to others what happened while I am getting back to it all… Fankoo ❤

I know I am also trying to level other characters, so I may not spend all my time on one… But the time I do spend, I think it should be enough to get lucky soon and improve that gear so I can help my group tackle Mythic dungeons (OK, to be fair, big part of my group can already do them, just not when I am in the group; another reason for feeling more disappointment and anger towards myself, they can do it and I am taking the team down, letting them down).

So, let me post this babbling and let’s get back to Azeroth! For the Alliance! For meeeeee!


It’s mild… 

•February 14, 2017 • Leave a Comment

Many people call Asperger’s Syndrome, or now ASS, a mild form of autism…

As someone who has lived her entire life being “affected” by ASS, I can tell you one thing for sure. 

Calling it mild is how you get to experience me being different. It’s not how I experience it myself, as it’s a daily struggle to “adapt” to a world, so different from my own. 

I need to read between the lines, because people just don’t say it how it is. I need to control my movements/stimming, because people find it strange/disturbing… They don’t know that I need it in order to soothe myself. So not being able to stim only makes the experience more difficult. I have difficulties with sounds, smells, lights. I need to adapt because others don’t experience it. 

So in order for you to experience my difficulties mildly, I have to work very hard, and sometimes, I can’t cope, I do melt down, I do act “weird”. I can’t wait until people can understand that for me to be able to experience my ASS mildly, the NT people need to adapt to me/us, not the other way around. And the way things are going on in the world right now, I’m afraid it will always be me that needs to put lots of effort in it for you to experience my autism mildly… 

On a side note, happy Valentine’s day everyone! 

When you need help… 

•February 8, 2017 • 1 Comment

…you can need it in many ways. 

When your friends come rushing to help you 😂

Maybe you need someone to drive you somewhere or pick you up. Maybe you need help moving or redecorating. Most of the times when people need help, they need it in the “human form”, as in another human being helping them out. 

And I also need human help from time to time. My wife knows how I hate to ask for help with the normal chores, as I want to do it by myself. She also knows some things are just not do-able for me and she helps me anyway she can. And I truly love her for it all. I also need help for my physical pain and I am grateful to have an awesome physical therapist who always makes time when it’s gotten too bad, even in between appointments. And I also need help with my mental disabilities. I know people can be upset when I call them disabilities, as they also make me unique and all. But the things, mental ones, I need help with, they make my life difficult, harder and that is why I see them as disabilities as well. And yeah, they also provide me with a totally different view on lots of things, which at times can be awesome. But it can also get me in trouble, make me lose friends and make me feel miserable. I thought I had decent help for the mental things but they told me at the last appointment that I need a different kind of help. As my “need” will never go away, it’s chronic, and they can now only provide help for/to people that have the ability to “get better/get over it”. So slowly in the progress of finding out what kind of help should be right for me… 

But that is all human help. I also need other kinds of help. Like how I recently bought a pen with a special grip, so I am able to write with a bit less difficulty. How I have been using a dental guard for quite a long time, to protect my teeth and jaws from grinding and muscles that tighten in my sleep. I have braces for my hands, back, elbows and ankles, which fortunately, I only need on the worst days. I have a thumb brace, which I need on a daily basis, ever since I fell/slipped in the shower. 

Needing those items to help me isn’t the worst thing. But needing to pay for them, buy them and, when needed, replace them, it can be expensive… If my physical condition would be acknowledged in the Netherlands, I could get better support for all the braces and stuff I need. I have to buy generic brands, as I can’t afford the specially made ones. And here they see Fibromyalgia as an “it’s between the ears, they’re just lazy” illness, it’s not being covered by the (over the top expensive) health “care” providers. Yeah, I put care between the “thingies” (I have no idea at the moment what they are called, my brain is trying but it only finds the most ridiculous names for them so I won’t use those names… Maybe some other time haha), because you pay and pay and pay and when you need medical care, euh, first you pay some more. And when your health prevents you from being able to work, when reintegration programs are after you to get better and get to work again (and you browse through 205 jobs that are listed and maybe, maybe, two could be something, but they need to be adapted though, so it really sucks and eats away any motivation you might still had…), you don’t have too much money to spend. Many people with “hidden disabilities” have this issue and it makes it even more unfair and hard to deal with. 
Yeah I am in pain. I take heavy pain killers, just to be able to participate in daily life. I have bad nights, sleepless ones or filled with nightmares, my head never stops to relax for a while… Having a mental “disability” that is hyper hyper (ADHD, with focus on the H), and having a physical disability like Fibromyalgia, it can mess you up. 

Your head wants to do many, many things. Things you love to do, things that need to be done, and things that are a bit of both. My head makes plans, every step of my day is getting planned, and then it starts in the morning. How will my body react after waking up, if I did sleep at all? And if it’s a decent or, when lucky, a rare really good day, I get to work on that planned roster and it can work out and yes, that makes me happy. But it also means I did way too much, as my head always wants to put 36 hours into a 24 hour day. So after feeling good about achieving the goal, my body punishes me like hell. And when I don’t have a rare good day, I can’t get my list of things crossed off, which makes me mad and angry at myself, at my body for not coping, at my mind for wanting too much… 

Although the subject is serious, one does need to laugh… Golden Girls Never fail to deliver… 💖

And then I have to admit, once more, that I need help. That the days when all I wanted to do was possible are over. That that’s also the reason I can’t find work that is suited for me… How ever much they push me. It’s not like I haven’t been looking… And maybe I am too hard on myself, thinking I can’t do certain things because I am afraid of failing, of letting myself and others down. But I have to be reasonable. Things I can’t do by myself, how ever much I would want to be able to do them, I can’t do on a full time basis. It’s not being lazy, it’s being fair to myself.
Yes, I need help. I need items to get me through the day, heck I even got glasses a few weeks ago. And I got a shower stool as I have to admit, I am afraid to stand in the shower ever since I slipped. Even though we have made improvements, I still remember slipping, catching myself, and still feeling the pain of doing just that… It’s been over three months since I slipped, and in about 10 days we’ll see the GP as I need a referral to an orthopedic doctor. My physical therapist checked my thumb/hand, as the only thing they did in the hospital was make a picture and tell me it wasn’t broken… And he found out what happened and is still happening. Hence the thumb brace and unfortunately, it still is able to move/get locked when I wear that… It hurts, irritates and I want it checked and, hopefully, fixed. So still a “work in progress”. 

As I am getting quite tired, I’m gonna finish this post and share it with you all. Thanks for your interest and hope you’re having a good day! Take care, luv LW. 

Since we all can need a hug at times…

Every step I take

•February 1, 2017 • 5 Comments

Hello again. If you’ve been a long time follower of my blog, you know I am not very lucky health wise. You also know I got hip issues at age 16 and many surgeries to fix those. And in the end, in October 2008, I got a Birmingham Hip Replacement, which really helps me a lot! 

But, due to all the surgeries I have had in that area (6 for my hip), the nerves in my right upper leg got damaged. I can’t feel heat nor cold, and it gives me lots of pain incentives. The Tramadol I am taking is helping me control that, but it can’t take it all away. During the colder/more moist days, my muscles are really sore. Often they also tense up, which hurts a lot. Due to the nerves not sending the right pain stimulants to my brain, it can feel like my leg is on fire, like someone is repeatedly stabbing my leg, like I get kicked into it… The pain I experience can differ, but it is what is is: painful! When it’s too much to handle, I collapse. I am allowed five doses of Tramadol, and during the bad days, they barely are able to take the edge off. Those days I am grateful that I am able to lay on the couch and suffer. The dogs walk is hell, but a responsibility I can’t neglect. 

But the pain, it’s dreadful. The spasms I sometimes get are almost killing me, as they hurt so bad, the negative thoughts and that dangerous whisper in my head are winning terrain. Dealing with pain every day is hard work. Dealing with the mental sh*t that is in my head makes it even harder. And still people (of the organizations that want be to get back to work) think I’m lazy, think I could easily work light jobs. I am not lazy! Dammit I have a ADHD brain I am struggling with on a daily basis to keep up. It wants more, faster, more and my body can’t oblige. I have worked as long as my body could keep up with. I’ve given up some of my favorite things because I just can’t do them anymore… 

Every step I take hurts, some days more than others. I’m trying to keep moving forward, even if just in baby steps. But I have to be honest to myself and also be able to take a step or more back when I can’t continue to go forward. I need to be allowed to break down and cry. To have bad days without feeling more bad about myself because of not being able to fulfill obligations I have. Like work… Like social appointments. I would love to be able to work, but am afraid of the obligations that come with it. Afraid of failure, of needing to give up, of being different. 

Every step is a scary one, as I have no idea if I can make it further or if I collapse. But I can’t keep still, I need to keep going on. Or I am sure the depression can get to me. 

But, I will keep going on as good or bad as it can go… Every step I take… 

Thanks for reading, for your interest, and have an awesome day! All the best, LW 🌻

Knock, knock… 

•February 1, 2017 • Leave a Comment

It’s been a while. Many things have happened. Some were good, some were awesome but health wise, I’m still no better. I’ve had more downs than ups and I keep fighting. But thanks to the way the unemployment/reintegration companies treat me, those downs are hard to fight. 

I miss a lot of energy. When the temperature drops below 10°C, my health gets worse. And when it’s below freezing, that’s when I hurt the most. When there’s a lot of moisture in the air, I ache as well. But we had many cold, freezing, days and my muscles were trying to kill me. My internal thermostat is also broken. One minute I am sweating like it’s 35°C and I am in the sun, the next minute I am freezing cold. But, many. People around us are getting ill, so it might just have found it’s way to me as well.
In the end of November I had a clumsy moment. It resulted in me being in pain  and calling my wife… Complaining how my slipper had a huge hole in it. I had dropped a cabinet door from about 1,70m on my foot. My toe was broken, they saw on the picture in the hospital. And they thought they had seen another fracture but they thought they were wrong (as it later turned out, there was a small fracture…).  So that hurt and didn’t help when the weather was turning on me. 

I’ve had some freaking bad nightmares, often, too often. Although I never remember what I dreamed about, I do wake up with a feeling… Sometimes I felt frightened, sometimes disappointed I woke up again. During that time, I also experienced a few panic attacks. Luckily I can spot them now, which kinda helps me keep it under control. But it does not do me any good, mentally speaking.

Why did I name this blog “Knock knock”? That’s my anxiety and depression knocking on my door. All those things happening, all the shit about being on sick leave, not to be taken seriously by the organizations, being treated like a douchebag instead of a human being with feelings… There are times I am considering the other way out… As I am starting to believe that little voice of depression inside my head. It makes more sense, bit by bit, every day. 

Maybe it’s also because of the pains I have been experiencing. I have less energy, so can’t fight the demons in my head that well. Have been sleeping in my attic room for two months, as I had so much pain, I was awake a lot. Seeing the wife still has to work, she deserves a good night’s rest. And I am too restless, even in my sleep. Yeah, I miss her, of course I do. I miss being intimate, since my skin is so sensitive and the pain so bothering… I can’t do it. Am afraid to raise expectations and then can’t continue due to all of the above. 

I will try to keep on fighting. I know it uses every bit of energy I have. And that makes me anything but the best friend, at the moment. I am having a hard time dealing with my (negative) thoughts, with the pain and with not being able to do stuff that helps me relax and recharge. So I am not a good friend right now, and I know it and am sorry for it. I do hope people won’t give up on me… Can’t blame them if they do, but still, hoping they won’t. Already wrote a short post about it a while ago on Facebook. But seeing the number of people that react to posts that aren’t all happy, jolly and/or funny… Even though I feel f*cked up a lot of the time, I do try to connect, even by “just” liking your Facebook post

When I feel down, when I share my bad thoughts and days, and almost no one responds… It feeds the little bad voice in my head. 

Ah well, better end this post and press the publish button. But afraid to do that, to be honest… So much truth, so much it hurts… 

Take care and thank you for your time and interest. 

LW xox 🌻

%d bloggers like this: