Wednesday 24 February 2021

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

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