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: (in)visible illness and Covid-19

Hi, I am 32 and chronically ill. If you would see me you probably wouldn’t be able to tell. Because there are no visible signs per se and also because if I leave the house that probably means I have to or feel well enough... Due to the global pandemic, I have been self-isolating since the end of February and haven’t left the house, not at all, yup that is almost 6 months that I haven’t left the house. But I know there are so many others just like me in similar situations and I am not just talking about the elderly we are all been warned to be careful around I am talking about small children, young adults, adults who are dealing with a visible and invisible illness, which makes us extra vulnerable to infections, diseases, viruses such as COVID-19. I know a lot of people, including doctors, have told the public about the health hazards for the elderly and vulnerable. But you are not always able to tell or know if someone is (chronically) ill and/or has (other) underlying health issues. Vulnerable people are not just the elderly. It can be your best friend, co-worker, aunt/uncle, sibling, neighbour, cousin... And therefore I wanted to create a little more awareness of why it is important to follow guidelines. I ask you to consider keeping your bubble small with those in your household and keep your distance from those who don’t belong in your household. Because even if you are not coming in contact with someone who would be at high risk you could pass it on to someone who will be in contact with someone who would be at high risk. Please wear a mask when asked. (*not speaking about those who physically/medically are not able to!) Even if you are not visiting your elderly (grand)parents because we are advised not to do so or with great caution (if you do so, thank you for that, that must be difficult!) but you still can come across others who are also very vulnerable without you knowing. This virus isn’t only dangerous for the elderly it is also dangerous for the vulnerable and that means any age. This virus does not discriminate it doesn’t care where you are from, where you have been, what you have done good or bad in your life and it does not care how old you are. So my main point I want to make is this virus could affect anyone, someone you may consider looking young, healthy and vital. But let’s imagine you are that person you consider looking young, healthy and vital but actually you are at high risk but no one would know because you can’t tell from just looking at you. When you are being careful following guidelines and such and someone else isn’t just because that person might not think anything of it and doesn’t visit their (grand)parents so that someone doesn’t feel the need to follow other guidelines because you do not qualify to them as being high risk. You can not judge a book by its cover, you can carry it with you, maybe and hopefully you do not get (very) sick from it but still pass it on to someone who will get very sick and might die. And with small gestures like keeping a distance from those outside your bubble, no shaking hands or hugging and wearing a mask in places where it is asked, we will be able to control this virus. Which is so important until there will be a vaccine or medicine. And some might say well they should stay inside than, I want my freedom. Or whatever bullocks I’ve over the past couple of weeks. I get you want your freedom and do whatever you want but aren’t we all human and isn’t it a humane thing to do to this together and help control this global pandemic. If this doesn’t help you see from a different perspective and you are someone who thinks are vulnerable people should stay inside or such. Have you realized while saying things like that; like staying inside that it isn’t always an option people might need to get there medicine, food, supplies, go to work, have doctors appointments etc. They might not be able to get or ask help from others, to have their prescriptions picked up or have their groceries delivered or work from home. Just like you need to be somewhere or go somewhere. So that in my mind is not a valid point. All I ask is for those who didn’t understand read and share this to help create awareness because even though we can’t always be together we need to do this together.

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

easy Easter crafts - step by step tutorials and FREE to download colouring pages

Can you believe that next weekend is already Easter weekend?! And with these crazy times, I haven't given it much thought really and maybe you haven't either. And since we all could use a little distraction and/or a fun activity I have made a list of some previous Easter inspired videos and Easter/ Spring inspired colouring pages. I hope everyone is doing well and staying safe at home as much as possible, if possible. As you may have read in previous posts I myself am in isolation, which isn't a stranger to me, since I am chronically ill with a rare disease and therefore at high risk. And by sharing some of my experience with being in isolation and my crafts I hope I can contribute. Even if it is just one person that reads my blogs or sees a video. You are not alone! x Poppy

Click on any of the images down below to download the mandala colouring page of your choosing. All colouring pages are in PDF format and FREE.

Mijn Hart Voor De Zorg

Je hebt misschien wel gehoord van de actie: mijn hart voor de zorg. Waarbij je een rood hart op een wit T-shirt maakt en het voor je raam hangt. Het is een actie om alle zorgverleners een hart onder de riem te steken in deze moeilijke tijd van het Corona virus. Het witte T-shirt staat voor de witte pakken die zorgverleners vaak dragen en een rood hart als symbool voor steun. Ik kwam op het idee toen ik bij mij aan de overkant zag dat buren zelf een T-shirt had geknutseld. Dat vond ik zo'n leuk idee, dat ik het wilde delen met iedereen door zelf een knutselplaat te maken een T-shirt met een rood hart te en een template te die je makkelijk kunt uitprinten en versieren.

Klik hier om de ingekleurde versie te downloaden in PDF formaat en
klik hier om de template te kunnen downloaden in PDF formaat.

Vergeet niet om het bericht te delen zodat er straks nog meer harten voor de ramen hangen.

In the Netherlands, we have been hanging T-shirts in the window to show our support to all the health care workers who work so very very hard during this Corona crisis. The white shirt represents the white scrubs most health care workers wear and the red heart is to show support. Then I saw one of my neighbours from across the street crafted their own T-shirt and it gave me the idea to make an already made version and a template with a T-shirt with a heart on it which you could easily download and print.

If you want to download the already made version click here and
if you want to download the template click here.

Don't forget to share this message so there will be even more hearts hanging in all the windows.

x Poppy