Smoking a right, breathing a luxury?

It’s probably not what you expected, since my PTSD and my other disabilities would make it difficult for me to sit outside (comfortable chairs anyone?). But really, the main reason why I can never enjoy an ice-cream or a diet coke on a terrace, especially when the weather is nice, is because people just really have to smoke.

Sometimes it feels as if their freedom, their right to smoke, is more important than my health or my freedom to leave my house, or sit on the balcony or in the garden (neighbours smoke). Or get inside a hospital without choking. Apparently breathing is far less important, it’s just my health you know?
I know not every smoker thinks like this, but sadly most people do think and act as if I’m one big fat liar, since smoking can’t possible be this harmful. Even non-smokers usually think I’m exaggerating when I have to get inside because someone is smoking. Or when I ask them to not put my wheelchair there, because someone is smoking. Or when I walk into a room and wonder if a person who recently smoked just walked by this room.

[Picture of a no smoking sign (cigarette with a red circle around it and a red stripe through it) and next to it the text: Please  no smoking.]

I wish I wasn’t this asthmatic. I wish my lungs weren’t as bad and I wish doctors would help me with it. I have an inhaler but it doesn’t work for these unplanned moments when I completely can’t breath. I can only use it before I’m going to do sports. I’d love to go outside, but I can’t. Smokers are everywhere. It’s even more saddening that smokers have been reducing the health of my lungs too. For example: I had to live for a few months with someone (a narcissist) who would smoke everywhere in the house and I’ve never recovered from that. He knew what he was doing to me, but he didn’t care. In stead he had other people bully me for it and force me to stand next to him in the smoke. He would ‘suddenly’ smoke a lot more when I was around….

I’m sorry for my rage, but I feel like too many people just don’t know how harmful smoking can be for other people. That it can really be a severe problem and not just someone thinking it has a ‘bad smell’. I obviously don’t always feel as negative about this problem as I do now. But it is a severe problem that I have to deal with everyday and it really takes the fun out of going anywhere.

Do you have asthmatic problems? How do you deal with smoke? Do you have any tips? I usually put my hands in front of my mouth, then it takes a bit longer for me to faint.

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“Your life is so good”/”you’re so lucky”

I’m sure a lot of people who are in need of care and live in the ‘rich countries/western world’ heard phrases like “your life is so good”. When people ask you about your issues and the things you can and can’t do, they always seem to feel this need. This need to tell you how grateful you should be, because your life is so good.

It makes me feel as if they think that I’m greedy instead of “needy”. As if I don’t think about other people who have it worse than me. About other countries where they don’t have any accessibility at all. I do, constantly. I can really sympathise with others and try to help everyone. But that doesn’t mean there still needs to be a lot of improvement done here, in our countries.

I think it’s because of a miscomprehesension a lot of people have. People who never came in touch with ‘disabilities’. I think this, because I hear this a lot and see it a lot. People think that all these things that I have are luxurious. There lies the big problem. It’s luxurious for them, but a neccessity for me. Why would it be luxurious to have a wheelchair and someone pushing you? They can just walk over the street too, right? Why is it luxurious that I need someone to clean my house and cook my food? I can’t do it myself and you would like to eat something too, right? Help isn’t luxurious. Yes, it is nice to receive it. Just because it is a necessity, doesn’t mean that I’m not grateful. But still, it is a necessity for me.
I can’t live on my own. I would die if I didn’t receive care or medication or treatment etc. Or I wouldn’t be able to do anything at all, which I already have to experience often. I don’t get all the help that I need and that actually disables my life so much more than my disabilities. But people don’t want to hear about that either. That the (health) care system isn’t good, that doctors can’t help/treat you or are mean, that people just don’t have time and just don’t understand that I really can’t do it myself. They don’t have that issue, so apparently it’s just unthinkable that others can have certain issues.

I just don’t understand this urge people have. To tell people who have it less good than they have, that they have it so well. All I can think of is this: “yeah, my life is good, can you imagine how good yours is? (Since you don’t have all these issues you encounter every day and don’t need any help)”. But they don’t think about that. I’m ‘lucky’. I never understood that either. Why is someone who got in a car crash and is paralysed, but still alive ‘lucky’? Aren’t we the lucky onces, because we didn’t get in a car crash?

I don’t understand why people need to compare. I don’t need to be told how good my life is. Or how many things there are in life that I can still do (even though in an adapted way). I know that, I live like that and think about it every day. That doesn’t mean that my problems, the things I can’t do and can’t adapt (well enough) aren’t there anymore. They ‘deserve attention’ too. I totally understand the positive outlook we all need to have. But really, claiming that the other stuff doesn’t exist or is no issue at all, isn’t positive (at least for me).

Yes, we need to focus on good things. But, we also need to pay attention to the things we can’t do. So that we can look for solutions and keep in mind that we shouldn’t go over our limits (too much). Thank you for listening and I’m sorry for my rant. I just feel like these kind of things need to be out there too. Because these are true too, these are things you encounter as well.

Life ain’t easy. A life of someone with a chronic illness and/or (mental or physical) issues that invade your life, isn’t either. And I have absolutely no need to make anyone’s life even harder or diminish someone’s issues. We all matter. And:


[Image with the text: Remind yourself that it’s okay not to be perfect.]

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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.


[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?

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