I have been called many things, many times, all sorts of nasty things. But I honestly can’t remember a single time I’ve been seriously called lazy. Of course, when joking around when there were not too funny chores around and all, yeah, there have been ways I’ve tried to make myself scarce. But when the time came, I did what I needed to do.

Several of my illnesses, my “disabilities”, my chronic pain givers, have no real reason of why one gets it… And several of them cannot be simply “be seen” / measured by a blood test. No one can hear my 24/7 beeping ears. There is no test that exclusively tells someone that I indeed suffer from Fibromyalgia. So according to the company where, amongst others, work the state’s doctors (UWV), I could be “faking” and just be lazy…


What they supposedly think I am doing all day…

Yeah, sure… I have worked until both body and mind broke down. And even then I needed to be put under pressure to inform my then employer that I couldn’t work anymore at that time. It felt like such a defeat, like I was just giving up too easily, even though I somehow knew that I couldn’t go on. I always worked, when there was extra work, when it was extremely busy, I almost always opted to work more hours, to come in extra in the weekends… But still, me not working now could just be that I am lazy…

I wish they would understand that when someone has to give up some of their most precious hobbies, even when they have the money/time for it, that there is something bothering that person. I have given up some hobbies that needed time, not money, like really walking or taking bike rides. I love to enjoy nice days while walking, riding, and being out there. Last year, there was a short period of time where I was able to walk some more and I loved it, even though I did “pay” for it in the end with having more pain and less energy. I used to love playing guitar, even though I only know some chords, but now, most days I lack the strength to play a simple chord. But yeah, I am lazy…

I am happy that the comment about me maybe just being lazy was made on the phone to my wife. If that guy would have said it to my face, I think I would have exploded! It makes me so f*cking angry. But also sad… Because I have tried, I am trying, to find a way to deal with all my issues. To find a way to make most out of a day, any day, and all they think is that I could be faking it. There is no real measurable test, so henceforth, it isn’t real…


Not really my motivation, but my energy! I am lost without it 😦

The next time we have a visit with such a person, since I am guessing there will be more meetings to come, I hope I find the courage to channel my anger into something that can help me to make them see I am definitely not faking anything! My muscles are so tight, one only needs (sensitive?) fingertips to feel it. My vertebrae has a light form of hyper mobility, which can be both heard and felt. It makes a knacking/cracking sound. Like when one of your fingers gets “locked” and you need a push or pull to release it. That sound, that feeling, but then in my lower back. That feeling of pain, even the sound it makes, is so uncomfortable. There is no way of sitting, laying, walking, that gives me a release from it. The cracking is always there with even the slightest movement. It just sucks!

*writers note: I started this blog in the night of May 27th going on 28th, after a lovely Bryan Adams concert in Oberhausen, Germany*

Even now, after 4 am when I am writing the first draft of this soon to be posted blog, I cannot find comfort in sleep. Had a most exciting, but also energy devouring, day and I so want and need sleep. So I slept for 30 minutes and been awake ever since… My body aches too much, my ears beep too loud and I am feeling a bit hungry. As we are not home at the moment, there is no cupboard or fridge with a nice snack…
I am going to upload the first draft, not that you notice until I finally share this post with you all, which in the end I did otherwise you wouldn’t be reading this… Aaaah you see, I definitely need sleep! Starting to babble… Let’s find a spot to charge the phone’s battery and hopefully sleep/charge my own battery a bit as well.

Now, it’s Monday. Needless to say I needed some time to recharge my own batteries and for the pain to get more mild, thus allowing me some rest. Last night was, again, a restless one. Tomorrow, I will have my 2 hours of “work”. When I try to translate it, it gives me day care, and that doesn’t totally feel right. Because of all the (unreal?) disabilities, I got the chance to try out some working experience through my mental health support. There were 9 agencies connected to their program, and there was only 1 where I could have a go/chance of some success (and still they wonder why I think I have no place in a real working enviroment anymore, when the specialized care only suits me 1 out of 9!). So I go there once a week, on Tuesday, for two hours. It’s 1,5 hours of adapted work with a coach near and 15 minutes break and then the last 15 minutes are for cleaning up and evaluating the day. I do like it, but it is hard and takes a lot out of me!

The first time I had been there, I fell asleep on the couch afterwards, so exhausted was I. Later on, I tried to stay awake, hoping that would help me more to sleep better during the following night. Unfortunately, that isn’t always so. The work itself is mild, easy going, my own pace, but the enviroment I am in takes away most of my energy. The sounds, people, chatting, so many incentives coming my way. And since I don’t have the ability to filter them, they all come at me. And that is, I think, most tiresome. Of course needing to focus for 1,5 hours on doing a good job, on sticking to their rules (even though I find some to be wrong, but heck, who am I, right…), daring to ask when in doubt… I usually need up to 2 days to recover from those 2 hours. But well, that is to be expected from a lazy person, I guess…

There is anger in me, so much hate mixed with disbelief… I know I am not lazy. I know my disabilities and all are real, even though my blood doesn’t prove it, the rest of my body does. I wish I was healthy, I wish I could work and earn my own Euro’s. I have so many wishes, most of them could come true if only one wish would be grated:

Please cure me from my pain
I don’t mind my AS/ADHD, they make me who I am
But I could really live without the damn pain every day…

Because of that pain I am being called lazy by people who literally can make my life even more hell than I am in now!


Yeah, it all starts with #1, you’re faking it, you’re just being lazy… 😥

I am really honest about it all, if my pain would leave me the hell alone, I would gladly start to work again. When I still worked, it fellt like I earned my money, now it feels like I am just taking without being able to give in return… And that idea, knowing that my body is to blame for this, hurts me even more. If there was a job I could be doing to earn my money, gotta be honest and say I would like to earn more than I am getting now… Because that is also something to deal with, when you can work, you might have less free time BUT you can enjoy it all the better and you’ll have more money to spend then. My body defeating me not only caused me pain and troubles with said agencies, but we needed to re-calculate the way we were living. When I could work, especially with all the extra hours this “lazy” gall put in, I had a nice income. So when my body finally broke down and my mind had to give in, we had to get adjusted to a totally different lifestyle.

Not only because I just couldn’t enjoy and do all the things we used to, but also because of the lesser income. I was a bit proud of earning what I did with my (lack of) education and all, and when you get into the health care payments, the income gets scaled down. Which is only logical, since you don’t work to earn it. But it takes lots of adjustment to get comfortable in a totally different lifestyle. Having to turn down friends because, even though you might now have the time, you lack the energy/money. Having to give up on things you love, either because your body cannot do them anymore (as I mentioned earlier in this post) or because the money just isn’t there… Living in pain is the hardest thing I ever had to do and the bad thing is, it’s a chronical disease, so it will never leave me. Or, someone must have heard my plea to have that one wish granted, and invents the super-power-pill and helps not only me, but LOTS of people around the world… If only…

Thanks for your interest, thanks for your likes and/or comments. I hope to be able to blogh more soon, but unfortunately, I can’t make any promises… Taking it one step at a time and when I can, write, I will!!!

Much luv, LW wlEmoticon-redrose.png


~ by Lonely Wallflower on May 30, 2016.

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