Rare disease: letting go of guidelines and still wearing a mask

So today in the Netherlands a lot of the guidelines about covid have been let go, like the social distance one. I must say I find it a bit scary but I mean I get it, that also mainly has to do with my situation, my health, my family’s health. But that is why especially on a day like today I wanted to share something. Some of you already know me, a lot of you probably won’t. 

So hi there, I am Poppy, I am chronically ill, I am fully vaccinated, I still keep my distance and I still wear a mask.  when I do need to come in contact with people. Just bear with me a second on why I am writing this and why I think it is important. I have been thinking about writing this post for the past couple of two weeks. I didn’t want to write it at first because I thought it might seem annoyed or something. But I have been thinking and I think it could help some people see some things from a different perspective. 

So this was the case: as some of you may know I am chronically ill with a rare disease. Therefore I have been very careful these past 1,5 years. I have been living a very isolated life, which I am no stranger to but you can read that in another blog post of mine. Even before all this I mostly had my groceries delivered at home. Ever since the pandemic hit the globe I have been careful, no close contact, have been using a mask and asking the deliverance to place the groceries by the door etcetera. I am always a bit down the hall, with a mask and I have the door open so I can say hello. Mostly they ask where to put the groceries since most companies didn’t let their employees deliver inside the house anymore due to the pandemic. Or I sometimes ask them to just leave the groceries on the doorstep or just over it. And if someone does want to place the groceries in the house which I get is just a nice gesture or something that is so wired in their system, I just ask them if they would place them on the doorstep or just over the doorstep because that’s just fine. And mostly their response is a bit of relief like they don’t have to carry all those groceries inside or like are you sure and that it is no problem, which still I get is a nice thing. But sometimes, and in these past years with the pandemic, it just only happens a few times, they are just too quick and already inside the house so I have to ask them to please keep their distance and I say that I am fine with it if they put the groceries over the doorstep. And again most of their reactions are like are you sure it is fine, which is just nice. But recently it was a bit different, still, the delivery person was super nice and just helpful and my guess is it is just a bit different now that most of us are vaccinated and we already knew about the upcoming changes to the policies and guidelines. So this time the delivery person was too quick, already in the house, so I backed up a bit and asked them to place the groceries just there over the doorstep. Since he took another step I said I liked it if we kept our distances. He was kind and laughed it off a bit but then he said a bit condescending and laughing well then I know for sure you are not vaccinated… Like uhm Oke… so I told him with a bit of an annoyed tone well yes I am fully vaccinated, which he again laughed a bit too, and I replied that I am but I still need to be careful because I am very sick. To which he was like oh oh like so. And seriously I get that some might be confused or maybe even like you don’t have the covid or anything right?! And I am fine I someone would just ask. I just say it like it is like that I am fully vaccinated but I am chronically Ill so I have to be extra careful. 

The reason I made this post is that even after today a day where most guidelines have ended I still will be social distancing, still be wearing a mask if I feel I need to, in a public place, at the doctor's, getting my groceries, opening my front door, etc. I really hoped that at the beginning of this pandemic people would start to see things more from a different perspective and have more understanding for people who are (chronically ill) or have disabilities. And that is why I wrote this post to let people see a different side. I do hope people will start to think more inclusive because if people who now feel like an outsider because they have to show a corona app to go to the theater, out to dinner, have lunch with friends. I ask them to try see from a different perspective because we have always been the outsiders even long before this global pandemic hit the globe things weren't inclusive for people with (chronic) illnesses and disabilities. Just imagine how they felt these past years. Loads of their worlds have become so small you can't even imagine and now because some feel they are left ut because they need a pass or an app or such to go places, they are creating a bigger gap again to those who have already been left out.

I could make an even larger post but I just wanted to give my experience as an example as to why some would still wear a mask or still keep their distance and why this would be greatly appreciated if that where to be respected. 

Rare Disesae: Happy rare disease day!

It might seem weird to wish someone a happy rare disease day but I am chronically ill with a rare disease. And that is why I know how important it is to create awareness for all kinds of (rare) diseases and chronic illnesses.

 

I have been chronically ill with a rare disease for over 10 years, I am 1 in a 1.000.000 and I have CAPS disease. 

 

In the past recent months I have started to share more about myself, about my rare disease but never wrote down the words I have CAPS and in honour of rare disease day 2021, I felt it was time to just do so. CAPS is short for Cryopyrin-associated periodic syndrome which is an overarching name for multiple diseases. I'll probably write another blog about what CAPS is and all soon but for now, it is enough. I just know that it can be very difficult when you have are rare disease to find like-minded people and therefore I wanted to just put it out there and to let you, someone know that if you are that person with a rare disease; 

 

You are not alone, together we are many.

x Poppy

 

 

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

Rare Disease: the adrenaline injection

Have you ever heard of an adrenaline injection like an EpiPen or a Jext-pen? These are injections given to a person when they are having an allergic reaction. There are over 1.000.000 different types of allergies in which you could end up using an adrenaline injection in case of anaphylaxis, which could lead to shock or even death. Anaphylaxis is a potentially life-threatening, severe allergic reaction and should always be treated as a medical emergency. Going into anaphylaxis can be quite scary, it is heavier than a "regular" allergic reaction. I used hyphens here because there isn't really anything normal about an allergic reaction but what I mean is your normal. Your body is letting go of a chemical called histamine which causes your throat to swell up, which makes it difficult to breathe, your heart feels like it is going a million beats a minute, your lips and tongue swell up, you experience a severe skin rash and it even affects multiple organs. This all could lead to the person to faint and even die. That is why it is always very important that when anaphylaxis is suspected you give the person or if the person is you, yourself an adrenaline injection. Because not giving the adrenaline injection can be way more harmful than not. Even when in hindsight it may not have been necessary. 

You may have already read in a previous posts that I am chronically ill with a rare disease. Part of that disease is that I can get severe allergic reactions, that means I always have to carry an adrenaline injection with me.

I have been carrying an adrenaline injection with me wherever I go for over the past 12 years. And I have had to use it a couple of times, which can be quite scary. It is not really difficult to use the adrenaline injection and anyone could do this which is a good thing because like in my case I could end up in shock and there is a possibility then that I can't do it myself. It is always important that when you get an adrenaline injection to carry with you, your direct surroundings do know you are carrying such an injection, in case they would have to use it on you and even more important is it that they know the correct way of using the adrenaline injection.

I have had a friend of mine once asked me about it (this is years and years ago when I first started to carry an EpiPen) and she wanted to know where I kept it and when she should use it on me. So as we were thankfully talking about the subject she asked me; so basically it comes to taking the injection and sticking it into your heart. PLEASE DON'T! This is a totally different procedure and has nothing to do with inserting an EpiPen.

And it isn't that crazy she would think something like that maybe you even thought about that being the right thing to do. I mean it is what John Travolta does to Uma Thurman in Pulp fiction. Well, actually such a thing doesn't even exist nowadays. There is no form of an adrenaline injection, that you would carry around with you in case of an allergic reaction, where you would stick a needle through someone's heart. So that has been a widely known misconception about adrenaline injections.

And yes of course, some adrenaline injections may work differently from one another. I only had the experiences myself with an EpiPen and a Jext pen which work quite the same. But as far as I know there is really no such adrenaline pen which you would carry that would work like that.

I never like the term allergies because some people don't understand, they just wave it away like it is nothing or even make fun of a person with an allergy saying things like well you shouldn't eat that or you shouldn't have done that and they just don't fully grasp how dangerous allergies can be. That is hurtful and I hope if you were unaware of what lies behind the word allergy that what I wrote helps you understand and be more understanding. And when it comes to allergies or intolerances I have always believed that you cannot know or judge something if you don't know how it feels or how harmful it can be. And all allergies are different even the same one allergy can be more severe for one person than another. So if you ever come across someone who tells you about their allergy please take time to listen and take them seriously. I hope you can understand it can be difficult for someone to share that with you so just try and be as understanding as you can even though you might not (fully) understand their situation be open to what they are sharing with you. And sometimes someone just needs a listening ear or even a shoulder to cry on.

If you would like some more information about an EpiPen or a Jext-pen I have put the links of a few of the official websites down below. And there are even official EpiPen and Jext-pen apps available for Apple and Android phones. These apps are quite similar to what they offer. They both seem to have an alert option as to when you'll be needing to replace your adrenaline injection and instructions on how to use the adrenaline injection. I say seem to cause I am not a fan of the apps because they aren't available to anyone who downloads it. Because for the EpiPen app you'll need a password from your doctor which I think isn't even for every country only for the UK or China and when it comes to the Jext app you'll need to enter a number that is on your Jext-pen. I think for both apps it is a missed opportunity to make them only available for the patient, I think it could come in handy in a lot of situations like when you are a teacher and one of your students is carrying an adrenaline injection or maybe one of your coworkers. Like I said before it is always a good idea to let your direct surroundings now you are carrying an adrenaline injection, for what purpose you are carrying it and how one can help and handle if something would happen. Because sometimes you are not able to do it alone or at all. So when I sum it all up I won't be using any of the apps because it has no extra value to me but I do understand the value for some and therefore it might for you. That why I did want to share the existence of the apps. If like me you are not going to use the apps, what I do is set a reminder in my phone for when I should get a new adrenaline injection every time I get a new one and don't forget that once you used an adrenaline injection you should always replace it with a new one. 

x Poppy

EpiPen app Logo

Jext app Logo

Other than using my own experiences I have also used a couple of sources to write this to the best of my abilities. 

If you suspect you have an allergy please console your doctor.

informative websites:
https://www.epipen.com/en 
https://jext.co.uk/

sources:
https://www.epipen.com/en
https://jext.co.uk/
https://www.allergy.org.au/patients/allergy-treatment/adrenaline-for-severe-allergies
https://www.leef.nl/kennisbank/de-adrenaline-injectiepen-tegen-anafylaxie-in-voorbereiding-op-vakantie/

Rare Disease: 90 days of being in (Corona) isolation

As you may know from previous blogs, I am chronically ill with a rare disease and therefore I already don't leave the house much. But now I don't at all and I think there are a lot of people who find themselves in a similar situation as mine, even people you might know, whether you might realize it or not. And that is why I am writing this to create a little more awareness and to tell you my experience so far.

So even with the experienced isolated person that I am, it has not been easy. I don't think it has been for anyone and I think it is good we also talk about that. That we don't ignore the fact that it is really stupid, like you're in a bad movie, so sad you wanna cry the whole day every day, scream and shout, the walls are closing in on you, it can drive you up the wall and all I just want is to let someone wake me up when September ends, yes I am talking Green Day. And those where just a few of the things I felt this morning. Since our government announced the first restrictions due to the Corona-virus it has been over 10 weeks, I haven't actually left the house since February 27th, which to this day is exactly 90 days, 3 whole months... but slowly but surely school and bars are slowly opening up again and we need to adjust to a new "normal". I mean why new normal I don't like that term but that could just be me. It is like normalizing a situation that in fact is nowhere near normal. All you can do is adjust and find your own routine one that works for you. Define normal... My normal already was I could not leave my house much although over the recent years I have been able to push my limits a bit more.

For me, this isolation thing isn't new and out of the ordinary but for me, I don't think it could not have come in a more bizarre timing. For the last couple of years, I have been trying out a new medicine which helps me get more control over my disease. Part of my illness is having frequent fevers, joint pain, constant general malaise, severe allergic reactions also known as anaphylaxis and that is just a small very small portion of the disease. I always describe it is as getting "sick" when in fact I am always but sometimes it flares up more and it affects me more which cause me to feel worse, sicker have more pain etc. It's always a circle of being sick, getting a bit better, not being able to hold my balance, getting sick, migraines, another flare-up, losing hearing, ringing in my ears all day every day, not being able to hold my utensils, another fever, feeling a bit better and so on and so on. Now with these new medicines, I have been feeling a bit better to even times I would say waaaaay better I could have ever imagined feeling again and I even started trying new things which a couple of years ago I could have never imagined I would ever be able to do.

For example, I went somewhere alone, for the first time in a very long time! Now me leaving the house by myself was of course before Corona came along and put all of us in isolation, which for me means I haven't left the house in the last 3 months. But yes, I am now almost 32 and I am excited to leave the house by myself. I always had someone with me just in case something happened like anaphylaxis. And I could not leave the house much because I always knew when I was at the destination or back home my disease would flare up again. So I never left the house unless it was necessary, I could try and plan something but it was never a sure thing and I have to be very careful cause those flare-ups could lead to something life-threatening, like anaphylaxis.

To explain a bit more first about anaphylaxis, that happens when I have a severe allergic reaction in my case a reaction could be triggered by (changing) weather, temperature dropping or increasing wind, rain, cold, heat, sweating, basically the elements of nature, well kind of. So before my new medicine, I tried to avoid this as much as possible which meant rarely leaving my house and trying to maintain a constant to try and decrease as much as possible the severeness and or frequency the allergic reactions and flare-ups. So coming back to me leaving the house; that also meant I went to my friends, if I could and went at all, always with someone with me whether it was my mom or brother. Yes, they are insanely sweet like that and I could never thank them enough for all they have done for me and still do but don't we all want to do things by ourselves from time to time right?!

I am skipping the whole part of when I first got sick and all the hospitals' visits I had and such cause otherwise this story would become even longer than it already is and miss the point of why I wanted to tell you why isolation is hitting me harder than it probably would have a few years ago but trust me I have got enough to write for a couple of years. And maybe I will.

Anyways for the first couple of months into the trial phase, I guess I really couldn't tell much difference in terms of allergic reactions, flare-ups, fever, rashes the whole shebang. But the first thing I started to notice was the difference I felt in my hands. I always had severe pain in my hands and I was starting to be able to hold my utensils, my mug and such since a long time with less and less pain and sometimes even without pain. And as you might I love crafting and without the medicine, it would take so much effort and even something simple like saying cutting a template was a days task. Plus if I pushed myself, which I often would, I would sure pay the price over the next couple of days and sometimes even weeks. So that was and is such a big deal to me.

And over the following two years, I noticed the medicine started to affect my health more and more, in a positive way. I am still sick but the flare-ups aren't as regular as is was the time rage between being "sick" as I would call it and feeling okay was now bigger on the okay part as to where before it would be the opposite. My ears, oh man my ears stopped ringing constantly. They still ring from time to time but not all day, every day, which also means fewer headaches and which also led to my balance being better, I used to fall constantly and feel dizzy all the time.

It gave back just a slight piece of my freedom and even the slightest piece of independence meant and means the absolute world to me. Before I got sick I have always been a busy bee going places, studying, going out and about, concerts, visiting friends and after I got sick that became less and less because if I did I knew I would brake the circle of the constant I already barely had and an even bigger flare-up was about to happen, no doubt.

Still, even with the medicine I know a flare-up is just around the corner and I can't do as much as I would like to but it has given me more time. I have tried to use that time I have had over the past two years for the things I love, like visiting a friend on my own, even the smallest thing like doing groceries on my own, spending time with family and doing something fun like visiting the theatre or cinema and I even started taking Pilates lessons. For me, that is huuuuuge cause I am not the sporty type and I haven't done any type of real exercise since I became ill cause because even sweating was a trigger. Also, I have never been a size zero and you might imagine no excessive meant I gained a "few" extra pounds, let's say. So that wasn't just a hurdle to take physically healthwise but also mentally sizewise. I did, I signed up, I went and I loved it so that became a weekly/monthly thing for myself to do, to go to alone.

I still remember the first time I took a bus somewhere alone, just sitting on a bus going to my destination, listening to my music, the sun was shining. All of a sudden I was hit with an overwhelming sensation of freedom, feeling like myself again and before I could process it I felt a tear rolling down my face. I wasn't sobbing or anything but I was crying on a bus, crying happy tears and frankly my dear I couldn't give a ****.

Sure even now I mean, don't get me wrong, it's still not all rosy. But let's keep it a bit positive I might tell you more on that another time. It has now been 90 days since I last went outside and all I can hope for is that this "new normal" isn't forever and all I can do is some crafting and write what's on my mind to keep me sane. So that is what I'll probably do. Tell you more about how I am coping or not coping with it and make some more crafting videos. As I find crafting relaxing I can imagine it is the same for loads of others.

I can only cope with it my way and sometimes I don't cope with it at all but I think that is natural. So I hope you can find your way of coping with it. And I have my good days and bad days physically as well as mentally and you are not alone in that. So although everything might see pitch black and the situation feels like you never could go back to the "old you". That is true you can't go back to the old you, you experience new things, life happens, the good, the bad and the ugly, you learn and grow older. So if I am even in a position to give advice, my advice would be you can only adjust and learn to make it yourself as easy as you can, don't be too harsh on yourself. And if I can go (back) to an isolated life and not go crazy (okay sometimes but let's say crazier) anyone can.

x Poppy

Rare disease: corona; going live tonight on Instagram 👋

Hej there,

As you may know, a couple of weeks ago I went on live Instagram to have a collective colouring in just for fun and to take my mind off of things and where you could join me. Since most of us are in lockdown, in isolation even quarantine I wanted to create a place where you would relax for a while even if it is just a bit or where you could talk to someone if you feel like, someone with a bit of experience being in isolation like myself. I always find crafting and baking help me relaxed and I just love doing things like that. Being quarantined can make you feel lonely and even depressed, so that is why I wanted to do something fun. And also if you do feel alone or depressed and you want someone to talk to, let me know! You can send me a DM on Insta or Twitter.

You can follow me on Instagram on https://www.instagram.com/poppy_makes/
and on Twitter, you can follow me on https://twitter.com/Poppy_Makes

I'll be going live again tonight (Sunday, April 12) around 9pm GMT, which is 10pm in the Netherlands. I don't know yet which colouring page I will be colouring in yet but if you need some inspiration yourself I have made quite a few colouring pages myself over the last couple of years which you can download for free in PDF format, so don't forget to check out the colouring pages page. Plus you could also just use a colouring page you already have of course it is more of a get together without being together.

You are not alone!

x Poppy

p.s. I have put a list of a few timezones down below

Los Angeles 14:00Chicago 15:00
New York 17:00
GMT 21:00
Berlin 22:00
Rome 22:00
Moscow 00:00
Mumbai 02:00
Singapore 05:00
Shanghai 05:00
Tokyo 06:00
Sydney 08:00

Rare disease: corona; going live on Instagram💞

Hej there,

I hope everyone is doing well, staying safe and following the guidelines your government and health department has given. In my previous blog, I explained to you why it is so important to follow those guidelines and what you can do for someone in need. Since I am chronically ill with a rare disease I am quite used to being isolated and at home for longer periods. That is why I thought to use my experience of being ill and use it for some good by sharing some tips online.

My idea now was to go on Instagram live from time to time while half the world is in lockdown and you could join me in some crafts or some mandala colouring-in, things like that. I always find crafting and baking help me relaxed and I just love doing things like that. Being quarantined can make you feel lonely and even depressed, so that is why I wanted to do something fun. And also if you do feel alone or depressed and you want someone to talk to, let me know! You can send me a DM on Insta or Twitter.

You can follow me on Instagram on https://www.instagram.com/poppy_makes/
and on Twitter, you can follow me on https://twitter.com/Poppy_Makes

First time I'll be going live is upcoming Sunday, March 29 around 3pm GMT, which is 4pm in the Netherlands. Plus don't forget the clock will be going an hour forward, to summertime in the night from Saturday to Sunday. I'll be colouring in a mandala colouring page I have made. You can download it here or go to the colouring pages page, where you could find loads of different colouring pages as well. Plus you could also just use a colouring page you already have of course it is more of a get together without being together.

You are not alone!

x Poppy

p.s. I have put a list of a few timezones down below just add or subtract the number of hours of your timezone to the 3PM GMT

Berlin 16:00 

Chicago 09:00

GMT 15:00

Los Angeles 08:00

Moscow 18:00

Mumbai 20:00

New York 11:00

Paris 15:00

Shanghai 23:00

Tokyo 24:00

Rome 16:00

Singapore 23:00

Sydney 02:00