Rare disease: it has been one heck of a year in quarantine

 

It has been a year, a little over a year even and the world has not been the same, I am not the same. I never thought that at the beginning of this pandemic I would feel the way I do today. It was not that I thought it would be all over in a year or that it would have blown over or anything. I actually thought I would have been able to handle it better. An in the beginning I did, although with a few more tears than normal that is but as you may know I am chronically ill with a rare disease and therefore I am no stranger to being in isolation. I have had periods before where I didn’t leave the house for days, weeks, months and where even a visit to the doctor would be a breath of fresh air. I knew how it felt not being able to do all the things I enjoyed before I got sick, I knew how it felt not being able to plan ahead or just being able to be spontaneous and just live my life. I hoped I would have been able to not let this pandemic get to me but it has been hard very hard. The weird thing is just before the pandemic hit us all I started seeing progress form my new treatment and I was able to even go to the store alone, I was able to go visit my friends by myself, I even started taking Pilates lessons. And sure this sounds a lot more rose coloured than it was cause still I had loads of precautions to think about and there was nothing spontaneous about these activities and sure if I planned one thing I needed to recover the rest of the week. But I had a little of my freedom back. Freedom meaning in my case a glimpse of the life I had before I got sick. I think that is why it has been more difficult because I was getting into a better place than I was in years. Before this treatment, that I am now on, I didn’t think it would ever be possible to regain even the slightest piece of independence. I spoke about this in a previous blog but the first time, since I got sick, that I took a bus all by myself, I actually cried. It was such a feeling of freedom to be able to do something on my own. Today I haven't left the house in over a year, I haven't seen friends, haven't been to Pilates not even to the store. And not just me because my family has been cooped up inside the house, just the three of us, yeeeh for all the damaged genes, with the only exception that my brother is a teacher so he had classes to teach before we went in lockdown. But all joking about bad genes aside we are all high-risk meaning we could and most likely would get very ill if we would get the coronavirus. Yesterday our government let us know some restrictions our about to be lifted like (most of) the (high)schools are going to start again with less zoom meeting and more real-life classroom teaching. Contact profession has been giving some green light which means things like hairdressers and masseuses can open up their salons again. It scares me. And I mean don't get me wrong I am not against opening up again that is not what I mean. It scares me because vaccination seems to be going slow, infections are rising so it is a scary time to loosen restrictions. But trust me when I say I get it that children, students want to go back to school and going to the salon is also about the inside, people are getting lonely, sad even depressed, struggling to pass this year struggling to keep their shop open. I just hope it is enough, I hope that there won't be a dip in following guidelines but more of a collective let's do it together like it was at the beginning of the pandemic. So we can get out of it together instead of groups of people saying we should split society into those who are vulnerable and those who are not. I don't want to waste too many words on that but I think someone like that doesn't know that people who are vulnerable already are in so many cases on the outside and already take so many precautions nowadays, that this is a scenario that is just inhumane and complete and utter unspeakable of. But I want to end on a more positive note: I hope that these loosening of restrictions will lead to a chance for everyone to catch their breath whether it is financially, mentally, emotionally, physically I hope spirits will be lifted again and we create a we-culture like at the beginning of this pandemic. Because it is not over yet but together we can make it more bearable and together we can get out of this situation. As for me, I hope I can get myself out of this rud I am in. I want to look forward but there is so little to look forward to right now which makes doing that so difficult. I am trying to make myself do a thing I enjoy but it is so hard to even put on make-up or brushing my hair some days or getting into something else then sweats let alone picking up a pencil to draw or a crochet hook to crochet. But I am trying and I am really proud of the fact I made two posts this month, so focussing on the positive I hope will help me. I don't think I will be leaving the house anytime soon and surely (knocks on wood nothing happens) I will not be leaving the house before I get the vaccine. But it is taking its toll on me and it is hard not to burst into tears, it's difficult not to cry myself to sleep every night but I am really thankful I am not alone, that I do not live alone, that I live with people who love me, who understand me and vice versa. So that was it for ending more positive I guess anyway, if you ever need someone to talk to I am always up for a friendly chat, you can find me on Instagram and Twitter just send me a dm. Wishing you a lovely day and stay safe!

x Poppy

Rare disease: 180 days of being in (Corona) isolation

Yep you read that right it has been 180 days, that is indeed half a year. And even though I am no stranger to being isolated it is kind of driving me up the wall right now. So why not go outside you say, go for a walk, get some groceries, enjoy some company etcetera. Well for someone that is chronically ill with a rare disease it is just not that simple. I cannot take the risk of getting infected with the Coronavirus and because I am at high risk it is just better to eliminate as much risk as I can.

Anyways I have been seeing more and more articles, stories etc. about why should we be careful around the vulnerable, the chronically ill and the elderly?! To put it in a very blunt way; Why should we save them because they were going to die soon anyway. Well, I wasn’t planning on dying anytime soon, I want to make something of my life. I am 32 years old and have been chronically ill for over the past 12 years and have been living in isolation for long periods at a time during these twelve years, meaning not going outside at all, not seeing anyone else besides my family or maybe only at those time go outside for the necessary doctor's appointment. About 2 years ago I finally got to test a new medicine and they make my life more bearable more of a life again. It’s not that I am not ill anymore it hasn’t taken away my rare the disease but in a nutshell, the flare-ups are less frequent which gives me more time. Now Corona has come along and I am (back) in complete isolation since the end of February. I haven’t left my house at all. At first, there was so much understanding and so much appreciation for all medical staff for people who already live in isolation etc. I saw so many started initiatives to bring people “together” to help out those in need. I do understand that the rules can and are confusing and ever contradicting at some times. I get that everyone wants to get back to normal because it would also be devastating for the economy if it didn’t. And if they are so worried about the economy regarding these rules and not following them anyway what do they think will happen to the economy if another lockdown will happen god forbid even a longer one or worse one. Isn't it far easier to adjust to the guidelines for a while and I am talking about those who really ignore all rules and even endanger others by doing so. Even if that someone doesn't get sick they could infect someone else. Someone vulnerable, someone who works in healthcare, someone with a vital profession. Don't they understand that even though, over here in the Netherlands, that the death toll and the infections aren't as high as they where that it doesn't mean we are out of the woods? We do know now how to treat people better and there are more bed in the hospital open to take care of those who are sick but there still isn't a vaccine or medication for this so unless we are all careful and take our responsibility we can keep on going to "control" the virus. Or are all the people who feel that way, who think they won't get sick, who don't care about the butterfly effect they could set in motion are they such tough guys they just don’t care a "little" (chronically) ill person less right?!

I don't understand why not just hold to at least those few rules and guidelines that are there, like keeping distance, no shaking hands and hugging (those outside your bubble), wearing a mask in places where it is asked of you, washing your hands frequently, avoid crowded places and not thinking well they are going... Things like that. 

What concerns me more is that I hear/read/see more and that those who are vulnerable should keep their distance, but how would this work in a supermarket for instance. Would someone write it on their face, wear a tag, announce themselves every few minutes just to be sure others keep away, please enlighten me. And in a country like the Netherlands where I am from, we have about 17 million people. Statistics say that on January first 2018 we had about 9,9 million people known who have any type of form of chronic disease. Meaning highly likely no form of recovery is in sight. That was about 58% of the population at the time. Just for those who still think it is just about a few people who we need to be careful around. 

I am someone’s daughter.

I am someone’s sister.

I am a person of flesh and blood.

I am a person with feelings.

I am not my rare disease.

I am someone!

So why are so many saying let the vulnerable keep distance, you wouldn’t be able to tell if you saw me that I am very ill and am at high risk. Why is it so difficult to hold to those few rules for just a little while longer, why is it that my life has no value compared to someone who isn’t ill, why can’t we do this together, all these people didn’t have to die yet, it is not only nature, besides isn’t it only humane to take care of one another. So today it has been exactly 180 days of being in isolation and I am starting to see my future getting grimmer by the minute. I had hoped people would become more understanding but alas I hear more and more that people like me shouldn’t be here anyway and I am only a waste of space. Great! I can only hope that 180 is a symbolic number to change and a change of mindset and caring for one another.

And I have said this before but I will post this here again:

Just please follow the guidelines of your government and health department, like:

• wash your hands regularly 
• don't shake hands, avoid close contact with others
• avoid touching your eyes, nose or mouth with (unwashed) hands
• cough and sneeze in your elbow
• avoid going to crowded places
• stay at home if you are sick
• avoid contact with people who are sick
• work from home if you can
• don’t visit those who are at high risk like your elderly or (chronically) ill relatives/friends
• check-in on one another (family, friends, neighbours) call or text them
• help if you can
• 
  

Regarding that last note even if it is just calling your grandparents, parents, siblings, friends or other relatives who might feel or be alone or feel or be frightened. Maybe hang a note in you apartment complex asking if someone needs help or share some more positivity on social media.

So please don’t be that person who says I’m not scared of shaking someone’s hand or hugging someone, well I don’t want you to be scared at all! I want you to be sensible and responsible for yourself, your loved ones and others. I get we all process this in different ways and I don't want to be pointing fingers or telling people what to do and don't do. But I do want to say that don't yell at someone who hoards you don't know their reason, don't diminish someone who panics they could have already sick relatives/friends, please take your responsibilities, please use your common sense, please don’t panic, please don’t downgrade the seriousness, please if you can do help out someone, please don't judge others, please stay safe.

I hope everyone stays as safe and healthy as they can be and try to do everything in their power to prevent it from spreading further. 

x Poppy

#BerenJacht #BearHunt - yay or nay or may

So at first when I heard about this #BearHunt #Berenjacht thing that was a big hit in Australia, Belgium and now also here in the Netherlands I didn't really know how to feel about it, wasn't it something that could encourage people to go outside when they weren't allowed to or at least not if it wasn't necessary?! And maybe that is just because I need to be extremely cautious because me and my family don't set a foot outside since we all belong in the group that is at high risk. But I do get it, it is a fun and cute initiative for children in these weird times where they don't get to see their parent(s), friend, teacher, grandparent, aunt, uncle, cousin etc. and when they do go outside that there is something fun for them to do and see and it is not all scary out there in the big bad world. And no I would be crazy to encourage people to all go outside and go on a #BearHunt #BerenJacht because please do not go outside if it is not necessary and I wouldn't even encourage people to go and take a morning/ an evening stroll but I get that you want to, but if you do go outside and you do need to take your kid somewhere outside with you I get it. I think it is a lovely initiative because it puts their focus on something else and not that they aren't going to school or that they can't play outside with their friends. And I like to think that we are now more than ever need to live in a society where we support each other and take one and other into consideration with our actions and help each other if we are in a position to and if we can. So even if you don't understand something at first or you don't always get what is behind it, doesn't mean you should bash it, as I have seen so many do with this #BearHunt thing. I mean they aren't hunting for real bears he. So with that all in mind, I created 2 printables (free to download in pdf) for these #BearHunts. One a colouring page and one already coloured in.

You can download the printable colouring page here: https://drive.google.com/open?id=1pculTPNaFjqwMpeeRuhCFsQjYChn0Byq
and you can download the already coloured in printable page here: https://drive.google.com/open?id=1SenPyoJAteqpK_BztJiAg8_cxEaLgbWA

Plus don't forget if you like colouring pages to check out the colouring pages page where you can find loads more free to download colouring pages but also loads of free to download printables.

*Disclaimer: I am really not encouraging anyone to go outside unnecessarily. But I do get when you must go outside, I get it can work as a distraction for the kids and that I think is a lovely idea.