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
No comments:
Post a Comment