Saying “no”

•September 22, 2017 • Leave a Comment

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.

giphy3

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…

giphy2

 

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“Find something else to do”

•September 21, 2017 • Leave a Comment

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.

goodfood

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?

•September 20, 2017 • Leave a Comment

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…

Asperger’s

•September 19, 2017 • Leave a Comment

My eyelids are so heavy
They’re slowly falling down
I fight to keep them open
It’s in my sleep I drown

I feel to frigging tired
But I can’t handle sleep
My head it’s faulty wired
When I go I dig in deep

I can’t follow your musings
Can’t understand the ways
Not seeing through your eyes
It’s not the way she says

Where you see a spectrum of colors
Somewhere in that spectrum is me
But I can’t look around freely
As it’s black and white that I see

There is no working filter
To what reaches my brain
If a NT would experience this
(S)he would probably go insane

So many flares rush through you
You need to find the best
The ones worth interacting with
The rest should become the past

But unfortunately they tend to stick
Until you have spend some time
And then it may be time to kick
Them out of your overflowing mind

I really do feel tired
Even if I sleep a long time
It’s like my brain never rests
Like my thoughts are covered in grime

I need to get my thoughts silenced
Just long enough to fall asleep
I wish there was a magic pill
Oh yeah, I would dive in deep!

Just to get some rest
Even for a little while
I know I could use it
I know I would wake with a smile

giphy1

©Lonely Wallflower, September 2017

150 bmp

•September 18, 2017 • Leave a Comment

giphy

It’s so frakking busy in my head
Images and words twirling wild
It’s something not everyone understands
It is anything but easy and mild

150 beats per minute
It keeps on going strong
Every minute of every hour
Every day, week, month and year long

No filter to apply
No way to suppress it all
People wonder why
I wonder most of all

How others see the world
How they handle it in their mind
It’s an answer that’s never told
An answer I’ll never be able to find

Keep going whatever happens
Keep going strong every day
There is no other “solution”
There is no other way

©LonelyWallflower 2017

Sensitive skin

•August 22, 2017 • Leave a Comment

More like sensitive skin, eyes, ears… Loads of sensitive parts that sometimes enhance my abilities, but often make daily life more difficult.

I have noticed that my sensitivity gets worse when I feel worse as well. When I feel OK, or as OK as I can be, I can deal with loads of things for a prolonged amount of time. When I feel like I need to hide indoors and can’t cope with anyone, it’s also harder to deal with anything, like sounds, smells, touching.

Lately my skin has been very sensitive. Partly due to me needing more painkillers, as my hand still hurts enough to bother me. But also partly because I feel like sh*t. I try to hide it, I try to make appointments for fun things to do with people I trust. But the news of my hand/thumb not being able to fully recover… That hurt me a lot, like I wrote about in my previous post.

Panic Kermit the Frog

My skin is so sensitive, I would like to wear soft pyjama’s all day. I haven’t been able to wear jeans in a few years as it is not comfortable against the skin. I’ve been wearing jogging pants, comfy t-shirts and some special sports trousers when it needs to look good and less shabby than my usual outfit.

I know, as I just mentioned, it can make me look like “trailer trash” (not my wording, but heard someone say that about me behind my back during a time I was in an argument with that person). But I always have my underwear where it should be, under my pants. I always try to find decent pants that have a good shape, as I can’t handle too sloppy either (it flaps and that bugs me).

Baloo from Jungle Book, scratching his back with a tree.

I have been cutting out labels from shirts and pants for ages. They scratch, itch and make a shirt (or pants) so irritating to wear. I love it when companies print their washing instructions in the inside of the shirt (or pants) instead of sowing it in on a label.

When I feel bad/stressed, my internal thermostat is also disfunctional, with heat flares and chills alternating through my body. That also doesn’t help my skin feel any better…

As I wrote in the last post, I’ve been trying to train my thumb. Not only with play-doh, but also with trying to game on the Playstation again. This weekend I’ve been playing several LEGO games with my wife, as they are awesome to play together. Although at times also a bit annoying, but mostly the fun rules!

LEGO

We’ve been busy on the Playstation 4, we played Harry Potter (years 1-4, finished the first year!), the Hobbit (we have just arrived at the Elves), Star Wars: The Force Awakens (we just took the Millennium Falcon while fleeing from the Troopers) and last but not least, Jurassic Parc (we just saved the boy from the car that was pushed into a tree). So we’ve been keeping very busy, which is a good thing as it keeps my mind of other things and I use my thumb in all different directions.

When I play alone, last few days I’ve been working on my seasonal Diablo 3 character, as I wanna get the gear set and the pet. Am in chapter 4, 6/12, for those who play. But I need to level the paragons and get better gear to get to torment 4…ah well, it keeps me busy.

DS9 Quark

Hehe that maybe too. Slowly getting closer towards our week of vacation, a week at Center Parcs Bostalsee, Germany, looking forward to it so much. I really need the get away, the change of daily routine and some relaxing time with my wife. We’ve earned it, or at least I like to think so.

Even though it’s not that hot in my attic room this evening (23°C), I still need the ventilator. I tried to leave it off when it was 22°C and I woke up bathing in sweat. I still sweat with the ventilator, but it’s a lot less, which is better for my skin

Donkey with an itch, scratching through fence wires.

Ah well, time to read a bit and hopefully get my head calm enough so I can fall asleep.

Thanks again for your interest and have an awesome day! You’re worth it!

LEGO Dwarves from the Hobbit game

Not 100%

•August 21, 2017 • Leave a Comment

Last Saturday, my wife asked my hand therapist if she expected a total recovery for my thumb/hand. I was dreading the answer, as I was very afraid that my feelings about it would become the truth.

Care Bears

And she answered. She explained her answer. And it hit me in the feels…

As the answer was what I was I was expecting, unfortunately. No, she does not expect the thumb to recover fully to the way it was… A part of it is still too stiff and painful, and she expects that I will be able to recover totally from the pain (I would never dare to say that to someone with Fibromyalgia…). Of course it would be nice if all the pain I got since the surgery would kindly frak off and leave me alone. But I would also want to have all mobility back. As I love to game and to try to play some guitar. Both things I need a functional thumb/hand for. I’ve already given up on several hobbies ever since the Fibromyalgia took over my health and body. I don’t wanna give up any more.

This news made me sad, of course. And it had a bigger impact on me afterwards. As I really cramped up in my sleep last night and my stomach is making me feel even more miserable. Plus the constant thinking about it, mulling it over, trying to find peace with a less than 100% recovery.

I’ve followed all the rules, I’ve even bought some play-doh to practice (that stuff smells by the way), and still my recovery is letting me down…

The pain, though it’s less than before, is still around 24/7. The muscle aches that come with it are almost worse, as they cause spasms at times (mostly at night) which makes the area of surgery hurt more… I thought I would recover, I thought the pain would not be this bad. Why am I so often wrong? And it’s almost never in a positive way. I want to try to stay positive, but this bites and hurts and pushes me back to the ledge.

The ledge I’ve been fighting to keep off. The ledge my dark monster, or my dark passenger, wishes I was on most of the time. Then it has the most power over me. I don’t wanna be on that ledge, but the simplest things make me so tired. This stupid thumb/hand/muscle situation is costing me more of my energy than I can “afford” to spend, as I need it to safe guard my so called sanity.

Star Trek: TNG - part of the cast and my wife and I

I will watch some Star Trek before bed time. I just finished the seven series of The Next Generation (I’m re-watching them as I’ve seen them all before and before and… We’ll, I’ve seen them more than once), so I started with Deep Space Nine.

Will do some of my thumb and hand practicing while watching. Better keep that up as it should help me to improve to the best possible situation.

Thanks for your interest! Wishing you a wonderful and positive day. With luv, LW

Care Bear

 
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