A whirlwind inside & out, some thoughts.
A year ago, mid-June, was the last time I tested positive for Covid and it’s got me thinking… 941 days/31 months, actually it’s exactly 2 & 1/2 years, tomorrow, after my first infection, what a whirlwind it’s been.
It’s been what some may view as a busy couple of weeks but really just for my lifestyle it appears busier, because most people can be busy and working full time (I can dream). It’s been up and down as well as feeling stagnant for a variety of reasons.
The guilt on those around me is almost unbearable, I constantly feel guilty. I guess it’s guilt for causing any extra to anyone, it’s something they didn’t sign up for. I feel like a hindrance, whether I’m asking something that anyone may ask a favour of or something for an additional need related to Long Covid. (I know, nor did I ask for this but this is about the guilt I feel on them regardless) I hate asking for favours even when I’m well, I’m stubbornly independent and have tried to keep this up even when I really can’t. I don’t know why it’s so difficult to admit that things are a struggle and that I need help doing things… I seriously wind myself up by not asking and then get in a pickle when I can’t do the thing or have to stop because of my symptoms flaring. Should have asked in the first place, duh.
I guess it’s actually because I’m feeling guilty for my existence in this form, that I don’t want to be in and am struggling to be okay with. I’m not me, nor am I the me people hope/think I am.
Acceptance is really, really difficult. Some days I think I’m okay with it all. Actually, no, I’m never okay with it all. But some days I think I’m trying to accept and live with the situation, other days I’m angry, a complete mess and a million miles away from any kind of ‘acceptance’. I think acceptance and being okay with a new situation can coexist but are also vastly different things. It’s hard to accept because it can feel like you’re giving up hope. However, that couldn’t be further from the truth. I’m always hopeful there will be a solution or better treatments for anyone with conditions like this but at some point you have to sit back and realise that, if there was a new medicine or something else I could be doing, that the online community or the Dr’s would be letting me know.
So, it feels like trying to live my life to the best of my ability, pacing my days and resting before & after to prepare for events seems like all I can do for now.
It feels like a lot of hard work.
Hard work, every.single.day. but I have to do things. It’s hard work because it’s not how I saw living at 30 but I don’t actually have a choice. I’m trying to embrace what I can, ride the waves, plan my rest prior and rest after things as much as my body needs.
I’ve managed getting to my sister’s passing out parade, a city break to Prague (cobbled streets are not a wheelchair’s best friend) and watching Coldplay all with the use of my wheelchair or mobility scooter which have enabled me to access these events — without these it wouldn’t have been possible. I needed these aids to make these events accessible for me. Without them I would not have been at any of them.
I still struggle with using these, there’s no denying it.
People stare and aren’t always as accomodating as they could be but the ones who do help are the best. My family ensure, and reassure me, it’s no more effort, even when I feel like and know it is. Airport staff have been exceptionally helpful in most cases and as a result, it has worked. I can access more of my world.
I managed to go to part of my friend’s hen do. With two and a half days rest prior and resting in the days after, Cotton Eyed Joe nearly killed me off and although the day after was hideous it was really, really worth it for those 3 hours with my friends.
Lately I’ve really been struggling with wanting to hibernate, to take myself away from the world because it’s easier to keep resting even though if I’m resting it may support me physically but socially it’s not always a good thing. I’ve been worried about sharing the good moments and the things I’ve been up to with people because I’m not truthfully honest about the struggles that inevitably go with it. Saying the tough stuff aloud is harder because it’s sharing reality which makes you vulnerable. The good stuff also feels vulnerable because I worry if my body could do the same next week or next month with the fluctuating symptoms it’s not an uphill improvement even if I wanted it to be.
It’s a weird fine line of not being Negative Nancy all the time but also letting people in and sharing how things really are. We’re all guilty of bottling up and hiding away. Some of us then tend to explode at once. I really wanted this year to be able to say that honestly I don’t leave things until it’s overwhelming, but I don’t like to share the crap stuff all the time as I feel like I’m a burden. It’s a hard conversation, let alone when you don’t like talking about the good stuff about yourself too.
The hibernation feeling comes with feeling like I’m existing but not loving things, a feeling of being ‘absent from life’, like I’m really not feeling present in the moment. Hopefully by building upon things I’m enjoying, like those mentioned, and getting to enjoy things with the use of my wheelchair or scooter, along with a bit more of an accepting attitude then I’ll be able to voice the realities along with the good stuff. It’s almost like I feel bad for enjoying things, as most of these things happen when others are at work, I feel bad.
I have had to withdraw myself from teaching related things because I found myself looking for jobs or just for interest on what’s out there but let’s be honest it wasn’t healthy because it didn’t help how much I still miss teaching and how desperate I am to be working. The real truth is, I’d rather be working, I really would. And I’m not just saying that. I still feel like my body has been ‘left behind’, I get a feeling in my gut that I don’t have anything in common with anyone at the moment, which is hard to face.
There’s so much to it but I worry because I’m not working, don’t have things happening in my life, can’t do the same hobbies like swimming/hiking/active things and because I’m very much still trying to navigate this chronic illness, that I don’t have things in common to talk about and share with others. It’s terrifying and I have read a lot about discovering new things in common with the same people so that you feel more level. There’s more to it and it’s not that simple but there’s something I’m working on slowly.
It’s indescribably hard to just recreate yourself, your life and your interests when your body is also limited. It’s tricky when you did the job you’ve always wanted to do and accessed hobbies previously without limits (possibly took for granted). Maybe not recreate but that’s how it feels like it needs to be in order to be more me.
Kind of a new version of yourself because you have no choice but at the same time have to move forward in some way.
What a whirlwind, on the outside but also inside my brain.
