Interview about my dream job

This is a translation of this blogpost, made by Sas from ‘I live for my dreams’. You can find my previous blogpost about this interview here. I have translated this blogpost/interview so all of my readers can read it. I’ve tried to translate it as literally as possible.

Dream job #17: Mel who despites a disability gets the most out of life.

You all replied to my post “I’m looking for you, tell me about your (future) dream job”. It’s amazing to read all the inspiring and different stories and see the enthusiastic emails pouring in. What is this column about? I let you have your say. Which is unique, because I only did guest blogs once before. I share a lot about myself on my personal lifestyle blog, but would like to hear about your future dream job or about the dream job you already found.

Mel graduated from HAVO despite her disability and is now doing a self-study VWO. She has a lot of interests and is trying to find or create her dream job in this way. Mel tries to adapt everything so she actually can do and accomplish things. I immediately had to think about the sentence: thinking in possibilities and not in disabilities.

 

First, tell me something about yourself. Who are you and do you have a blog?
I am Mel, 21 years old, I love animals, exercising, photography and doing other fun stuff. I have an English blog: enabilityblog.wordpress.com. I blog about things that interest me or things I come across, I actually blog about everything and nothing. I hope I can spread some awareness about different illnesses that I and other people have (amongst other things). I also like to learn things and by writing and not only reading blogs, you get more interaction, through which I can learn more from others. I live together with my boyfriend/partner who also has (physical) disabilities, which is why we can understand each other very well. Because of my disabilities I can’t just do everything, but this doesn’t stop me from trying everything and adapting everything, so that maybe I can do it after all.

Which studies did you do?
I am currently doing VWO. I’ve actually always done this, but it was increasingly difficult for me to attempt school and eventually I couldn’t go to school at all. That’s when I got my HAVO diploma a few years back, as an insurance, because my disabilities have been progressive till now and thus my health continues to decline (and secretly also because of my fear of failure).
I can’t go to school in a ‘normal’ way and actually do everything through self-study. It takes me twice as many years to complete a study and I also need other adaptations, such as adaptations for tests and special furniture. Last May I did and passed a couple VWO exams. I hope to fully complete my VWO study this school year. After that I’ll hopefully go to university. I have a lot of interests, so there probably is a study that fits me and my disabilities J

Which jobs did you have in the past?
When I was young and the disabilities weren’t (too) bad I did a lot of volunteer work and also different things. But it boils down to helping animals and helping people (including people with mental or multiple disabilities). I really enjoyed doing those things. I also had a ‘real’ job for a few months as a waitress in a restaurant. I couldn’t walk or stand anymore (amongst other things) so I had to quit.

What is your current job?
At the moment, I don’t have a job and I have been fully disqualified. I’m busy with school and I hope I will be able to work (a bit) in the future.

What is your dream job?
I don’t have a dream job right now. There are multiple things I would call a dream job, but I would also like to look realistically at what my qualities are and what I can’t do or aren’t very good at. I think I can develop a dream job this way, simply by itself. I also think there are multiple ‘types’ of dream jobs. Such as ones for which you use a lot of imagination: as in you have magic, you can do absolutely everything, what would you do. But also more realistic dream jobs: something you might actually be able to do in this world.

I, myself, am more occupied with goals and wishes than with dreams, because I found out that dreaming without boundaries makes me unhappy (because reality is simply different with my physical disabilities). But I have plenty of wishes (and you could see my wishes as dreams) and I certainly also have (high) goals.

What is the most important thing for you in your dream job?
I think the most important thing is state you enjoy it/that it makes you happy and that it gives you a meaningful feeling. Balance is also very important for my by, so the dream job has to fit in a life in which you need a lot of moments of rest (amongst other things).

What advice would you give my readers for finding their dream jobs?
Look at the things you like to do and which things you find important (such as doing something ‘meaningful’ and what does meaningful mean to you? For example helping other people). For the rest, I would advise everyone to listen carefully to your own body, to prevent overworking yourself during your search for a dream job (or if you already found it). I made that mistake and in the current society it seems to happen more often. But we all exist out of more than work and we need our body longer than that.

I would like to sincerely thank Mel for this inspiring interview. It’s beautiful to read how you’re trying to get everything out of life and find/create a realistic dream job. It’s magnificent to see how open you talk about your disability and how you handle it. You are a real persistent go-getter! I want to wish you a lot of luck with your education and your future.

Little blog update

Hi there readers, all two of you! Maybe you’ve noticed I haven’t posted anything this week and I’m sorry I haven’t written and placed a new blogpost. I’ve been very stressed lately and can’t find the energy to write something down. I’m in my exams period (I need to pass these to graduate) which apparently puts a lot of stress on me (more than I thought it would). This also makes my PTSD come more forward and I find it difficult to see myself falling back in old (and bad) patterns and be very afraid again. It’s hard for me to do the exams, because it’s not completely adapted to my disabilities. For example, I can only concentrate and have the energy to do school work for 15 minutes in a row and about 1 hour in total. But these exams can take over 4 hours in a row to complete.

My partner and I also have some issues with the company that should give us our care, since they haven’t been giving it at all or nearly not enough for a while now (for example only one hour a week, when we both need care at least 2 hours a day so that should be at least 28 hours a week). It’s very frustrating, because we can’t just do it by ourselves. It’s not like I can suddenly use my hands like ‘a normal person’ and can draw, cook, do dishes etc. Or can walk for a long time.
People tend to forget that it’s not luxury for us and that we really need the help. They even said that they have other clients/patients who they get a lot of money for but they don’t need any help at all. And that’s how the organisation wants it to be. It’s unbelievable since we’ve been totally honest about everything and said them exactly what we need. Yet they’re surprised it’s true and that there are people who need care… Same applies to our psychological issues. We told them everything and also about my panic attacks and how they can be and what you should do. And now one of the nurses has seen it and totally freaked out and got angry because we never told her about it and it’s way more than they can handle (previously they said it was something they could easily handle and they deal with it daily. They are just looking to make some easy money here. Most of the staff who should help us/care for us don’t even know what PTSD means/is. And they’re specialized in these kind of things!). Ok, enough nagging for now. There are still positive things in my life too. We had a few sunny days and I’ve driven two horses again yesterday. I’m also busy doing hot yoga (which I adapt so I can do it), but I’ll tell you more about that some other time!

butterfly-on-a-sunflower-shane-bechler
[Picture of a yellow butterfly sitting on a sunflower with a clouded but sunny sky in the background]

I do have a lot of ideas and stories for my blog though, but I keep forgetting them if I don’t write it down immediately. I have been updating my previous posts. I was inspired by the great blog Bold Blind Beauty. I’ve been reading quite some posts from people who have a visual disability and nevertheless are great bloggers and very inspiring (at least for me!). One of these blogs is Bold Blind Beauty and I’d like to thank Stephanae for writing her blog. I find your views very inspiring and I have to admit, your title really suits you and your blog!

I’ve been thinking a lot about making things accessible for everyone, for example my blog, just like I want the world to be accessible for everyone. It should be the standard and not something special. I saw at her blog that she describes the pictures she places and I thought it was a great idea. So I’ve been trying to do that now too in all my (previous) posts, although it won’t be as good as she can describe it. But now the world becomes a tiny bit more accesible for everyone. I felt so stupid I never thought of this idea myself! I was trying to find out wether you can put a little recording of your voice reading out your post, but haven’t found an option like that (do you know about something like this?).

I believe that together we can overcome all disabilities by creating solutions for the problems we experience. Even if a ‘solution’ only helps a little bit, it can really improve your quality of life (at least that’s how I’ve experienced it). I find it sad that so many people don’t seem to care about that, because money is more important or just out of ignorance (even doctors have that a lot). But thanks to the blogging community I found some more energy to keep on trying. I hope everyone haves a lovely week and I’ll try to write something despite my exams this week and the upcoming weeks. I’m simply missing it too much, even though I’m too tired.

Photo source

Wheelchair stories: going to my favourite restaurant

Sometimes my boyfriend and I want to go out. Often this means going to the cinema or eat in a restaurant. We can’t do this very often (due to our disabilities and psychological issues but also because of money problems), but sometimes we just want to. So we make it happen. Just like on December 4th, when we went to my favourite restaurant, together with my parents and brother to celebrate our anniversary (on December 5th 2015 we had a relationship for 2 years. In November 2015 we’ve been living together for a year, but I’ll probably tell you more about that some other time).

We have this special restaurant which we really like, luckily my parents and brother like this one too. The food is just great and it isn’t expensive. However, it’s quite an adventure for us two to do this. We’ve already been here a couple times before (last year we went here 2 times 🙂 ) so we know the drill. The staff doesn’t.

First we have to make a reservation, this year my dad did this for us, which I’m grateful for, because I’ve apparently been hit by the flu or another virus – and I don’t like calling. You sometimes have to wait so long (I often have to call hospitals..) and sometimes people are mean so then I find it a bit scary again; and it just costs so much energy and I find e-mailing so much more effective and faster (I’ll probably make a blogpost about this sometime too). So if possible my boyfriend and I both rather don’t call, because it just isn’t very suitable for our disabilities. When we make the reservation, we already announce that we need a table suitable for a wheelchair. This, because their regular tables aren’t. It’s this western-style restaurant and it looks really nice (the staff walks around dressed like cowboys and the restaurant is nicely decorated) – but the chairs and tables are awful. You just can’t sit under it with a wheelchair, because of the massive table-leg that is as big as the table itself. Then again, if they didn’t have such awful chairs (everyone always gets back pain, even though they ask for extra pillows and normally don’t have back pain) then most of the time I wouldn’t have to come with the wheelchair. I only have to walk a little bit and I can always go on crutches or get support from my boyfriend or family when walking.
It’s a 30-minute-drive (when we use the highway) to our favourite restaurant, because it’s in quite a remote place. So I’m really happy we found our family willing to drive us and join us for dinner (they even paid for us!).

ribhouse-texas-voorst

[Photo of the outside of a restaurant in cowboy style].
Note: This is not the same restaurant.

When we arrived, we found out they didn’t get the right table from the attic, although we asked for it over the phone. This actually happened last time too. It’s ok, I don’t get angry over it. You can see they’re not used to wheelchair users, because they never come here. That’s because the building isn’t disabled-friendly at all. There are major thresholds, they don’t have a toilet for disabled people (and the hallway to the toilets is too narrow to go through with a wheelchair anyway). They also have these swing doors you always see in saloons in western movies , so that’s always an adventure to go through. We already developed some good techniques for that 🙂 Oh and even though they aren’t used to it, the staff does treat me with respect, just like they treat the other guests. I hardly ever encounter that, just because of the prejudices people have about wheelchair users. And they do seem to actually feel sorry (and surprised) when they find out their restaurant isn’t disabled-friendly – and are very glad when they discover we’re pretty used to these situations and always find some kind of solution for it.

Eventually we sat at a less-awful table, so I could reach the cutlery, even though everyone couldn’t still really get their chairs under the table. I was happy, because we did it. We sat there. The food was great and it was rather quiet in the restaurant. Which is exceptional, so we were glad we picked this date, instead of December 5th which isn’t only our anniversary date, but also a national holiday (sinterklaas). The place is always crowded and they always play loud music, sometimes live. Even a little parade comes with whistles and all dressed up when it’s someone’s birthday (and they also announce whose birthday it is),  but on holidays it’s even more and of course more little children. So the ambiance was great for us. We had a nice time, despite all the obstacles we had to overcome to get here.

For me, it was a wonderful evening. We’ve been there for an hour (my family – including me – are fast eaters, so an hour is long for us) and the chatting was nice. I’m glad my boyfriend and I could celebrate our anniversary, despite all the stuff going on such as all the uncertainty we still have going on about housing, school, getting help, money etc. (more about that another time). Using the wheelchair is a great solution, because it’s adapted for me and my bad back. Otherwise I wouldn’t be able to sit, lie or walk for at least 2 days when I have to sit on those chairs for an hour. Despite all the issues this restaurant is still great. I’ve had more issues with other restaurants and then I’m not talking about the tasteless but expensive food (yet). I’m just happy they don’t have stairs here before you can go to the toilet or enter the building.

As mentioned before, both my boyfriend and I have chronic fatigue problems. For us, going to a restaurant for an hour is like a complete day out. And I’m just really happy we found a way to still do things like this, sometimes. We also have some problems with food. My boyfriend officially has IBS (irritable bowle syndrom – in Dutch PDS prikkelbare darmsyndroom) and they think I have this too. So when we’re home, he has to go to the toilet for a long time, multiple times that day (and often the next day too). My parents asked if he was willing to do this (I already knew the answer since we talk about everything). He replied that he chose for this willingly and knowing the consequences. He often has this problem with almost every food he eats anyway and at least this food is ‘worth it’. And we often only do this once (or maybe twice) a year, so it’s ok. We’re both happy, despite our diseases and disabilities. I hope more people can enjoy these things too, despite their problems.

Photo source

Early bird?

For now I got a very ‘loud’ subject, my problem at hand. For about 1.5 months the peace and quiet my fellow Hippo (my partner) and I really care about is gone. Apparently some of the neighbours in our apartment building are refurnishing or rebuilding their house. I actually think they want to completely rebuild the entire building! As you can probably imagine, the noise is.. (how can I put this nicely?) very present. We can’t hear each other speak (while we’re next to each other) and we can’t hear ourselves think (although I’ve been doubting over the past few years if I can still think with all the brain fog and concentration problems etc.). Oh and it gives major headaches of course.

work-in-progress1

[Image of the traffic sign of someone digging and next to it the text work in progress]

But for me, the real problem is the time they start doing this. Usually around 8 AM, but yesterday they started at 7. For me, this is unimaginable. How can people be up and working at such a time? Many years ago I had to start school at 8AM, but now.. I can’t rise early, because of the chronic fatigue which I think is from the fibromyalgia. My partner has this too, because of his CFS (chronic fatigue syndrome – in Dutch CVS, chronisch vermoeidheidssyndroom). Does anyone else recognize this too? When we have to get up too early (before 9 AM, but preferably at 9.30 or 10) we can do a lot less on a day. The fatigue gets a lot worse and fainting (and possible temporarily paralysis) is a lot more frequent. We can’t get up too late either (then my fellow hippo gets sick too, I’m not sure yet if that’s the same for me).

However, when I try to talk about this subject I encounter a lot of incomprehension. People act like I’m just some lazy pig who wants to sleep a little longer. Well, of course I’d love to sleep a little longer, since I hardly sleep at all because of my sleeping disorders, but I don’t let that interfere with my life. I can’t afford to, because I already can hardly do anything because of my illnesses and that I can’t choose… (my body often gives me a ‘kind’ reminder of that).
I find it sad that so many chronically ill people encounter so much incomprehension; people thinking they have so much free time to do whatever they like… That’s just not true. We would love to do the same things a ‘normal’ person can. For example being able to work 8 hours a day, sport 2 hours and do nice things in the weekend, wow! I’d love to study a lot. But that’s just not in it for me and most of the time I’ve accepted that. Taught myself how to deal with it, but sometimes other people make it a lot harder for us (for example forcing you to do too much) to accept our bodies with its diseases.

What I’m wondering though, is should I try to say something to the neighbours (I’m not exactly sure which one is destroying their house and rebuilding it)? Because my fellow Hippo and I are worried that it are ‘those’ neighbours, the only one we got in an argument in. And she got angry because we weren’t ‘ready’ to talk to her at 8.30 AM (for the record: it was a surprise visit). That, plus my other experiences how people often react to the ‘early bird problem’, makes me wonder if it would help at all to ask them to start later. I actually think they might be able to, because they often stop for a couple hours and then return making little earthquakes later in the afternoon (such as 3PM). I’m just afraid they won’t understand, and at the same time I don’t want to bother them with our problem. If we were just normal, it wouldn’t have been a problem, right? (although I do find it disturbing that they never warned anyone that they were going to be this loud for 2 months – or maybe more).

Something I find very linked to this problem is the ‘brain fog’ problem. For the people who can read Dutch: I think this is a good blog post about it. For the non-Dutch speakers: brain fog is about the ‘fog’ people with fibromyalgia often experience in their heads. Making them unable to concentrate or remember things. I find it very linked to this problem, because I think the chronic fatigue is linked to lesser mental abilities and because of the incomprehension on all three subjects (chronic fatigue, brain fog and unable to rise early).

Do you encounter these problems too? What would you do in this situation?

Photo source