I could probably sleep for 2 days completely unfazed right now and wake up still exhausted. My clothes hurt. It hurt to have a blanket touching me last night. Getting in the water for aquatic therapy hurt yesterday and the lady probably thought I was a big loser, the 24 year old kid who showed up 15 minutes late. I didn't even want to go. I didn't want to leave my apartment. I wanted to lay in bed and have a pity party because it hurt to move yesterday morning and I made myself anyway. I went home and took a nap and cleaned my apartment top to bottom, because my roommate moved out and no one else was going to do it. It's seriously the hardest thing ever being on your own and being chronically ill. I just started seeing someone, and I seriously asked if they will help me take out the trash next time they come over. I live on the 3rd flood. The dumpsters feel like they're a mile away. I can barely make it that far carrying the trash bag on a good day and it's been a bad week. I need help and I don't know how to ask for it or who to ask because who's going to come help me clean up my own mess. How embarrassing is that? It's challenging, doing it on your own for the most part when you're sick. I'm going on 10 years now since the definite onset of my disease. It's taken a toll on me. I know I'm in so much better shape than some other people but some days are just so hard and sometimes I just wish I had someone to truly lean on day in and day out to make this journey easier.
How do you explain lupus to new people without scaring them away? I used to very boldly tell anyone who would listen I have lupus and what all it was. While I am still completely comfortable talking about having lupus and explaining it to people, I've found myself trying to keep it out of conversation with new people as much as possible. I feel like the older I get the more being sick is a real drag again. Oddly enough during college I wasn't out parting and going out often so I wasn't missing much other than class for the most part. Now I feel like I'm back in the boat of missing out on a lot because I'm both financially struggling (because I'm sick) and socially struggling because I'm sick. I can't go out during the week because I'm pretty tired from work, and I can't go out on the weekends because the Methotrexate wipes me out and I can't drink when I take it on Friday nights anyway. I don't even know how to explain to a healthy 24 year old how incredibly frustrating my life is right now trying to find a balance. I want more than anything to be able to fake it until I make it and at least give off the illusion of being normal, and let me tell you I've been trying really hard lately. It's really starting to catch up with me.
I could probably sleep for 2 days completely unfazed right now and wake up still exhausted. My clothes hurt. It hurt to have a blanket touching me last night. Getting in the water for aquatic therapy hurt yesterday and the lady probably thought I was a big loser, the 24 year old kid who showed up 15 minutes late. I didn't even want to go. I didn't want to leave my apartment. I wanted to lay in bed and have a pity party because it hurt to move yesterday morning and I made myself anyway. I went home and took a nap and cleaned my apartment top to bottom, because my roommate moved out and no one else was going to do it. It's seriously the hardest thing ever being on your own and being chronically ill. I just started seeing someone, and I seriously asked if they will help me take out the trash next time they come over. I live on the 3rd flood. The dumpsters feel like they're a mile away. I can barely make it that far carrying the trash bag on a good day and it's been a bad week. I need help and I don't know how to ask for it or who to ask because who's going to come help me clean up my own mess. How embarrassing is that? It's challenging, doing it on your own for the most part when you're sick. I'm going on 10 years now since the definite onset of my disease. It's taken a toll on me. I know I'm in so much better shape than some other people but some days are just so hard and sometimes I just wish I had someone to truly lean on day in and day out to make this journey easier.
1 Comment
Niamh
10/26/2016 08:19:25 pm
Hi there. I'm sorry you're feeling this way. For what it's worth, I'm going through the exact same thing at the minute. University was fine because the people who needed to know about my lupus knew... but in the workplace now, it's a more difficult thing to bring up as boldly as I used to. Know that you are not alone. Know that you are strong. You were 15 mins late? You just kicked alternative-universe-you's ass, she chose to stay in bed. Revel in these small, personal victories. We are dealt the cards we are dealt, and it's up to us to make the most of it. If you need a pity party in bed, you have the best damn pity party - feel sorry for yourself, binge Netflix, have a big cry, do what you need to do to feel better. I'm sorry you feel alone. I hope that this new person in your life understands and supports you, but regardless of whether they do or don't, remember that you are your biggest supporter! I hope this doesn't sound like a long list of platitudes, because I truly believe every word. I wish you all the very best, and I hope your week gets a little brighter. With love.
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