Imprisoned Again

As I’ve mentioned in previous blog posts, I am mostly homebound. I say mostly because its not quite 100%. I’d feel like I was being dramatic by claiming I am fully homebound. This is because on rare occasions I do actually leave the house. Usually its only for doctor appointments or when I absolutely MUST go to the store for something. Also included is the rare special occasion like a party, major celebration, etc. There are also times when I feel pretty good and I actually go out quite a bit. After being stuck in the house for months, I can’t wait to get out and explore the world again. Unfortunately, this special time is quite rare. I’m lucky to get a total of about 2-4 months out of the whole year of feeling good… normal. This total includes weeks in a row, plus if you add up all the random good days I’m granted throughout the year. Yes, I’m sick far more often than I’m not. The point of all this is, I’m 99% housebound for about 8-10 months out of the year. I’m pretty sure that doesn’t quite qualify as fully housebound. Not that it matters much anyway. Whatever. I digress…

Today has been like most others the last 2 1/2 months. I’ve had varying degrees of feeling bad during this time, which means I’ve been home again. I don’t go out for weeks at a time. Definitely not for anything other than what is only absolutely necessary. I haven’t been able to go grocery shopping at all during this time, so I’ve relied completely on delivery services. I think I left my house only 3 times. I haven’t even driven my own car in about a month. It’s pretty sad actually. I WANT to go out and do things. I try everyday to talk myself into going outdoors, but it just never happens. I usually feel too bad and just give up. It’s not worth the effort, pain, and suffering that comes with actually doing something. I also have anxiety about how bad I’ll feel when I’m actually out and start to feel really sick or completely exhausted. I’ve been in stores where I’ve had to abandon my shopping and talk myself into walking all the way back to my car because I feel like I’m gonna just drop right there on the ground. It’s a terrifying feeling actually. So I simply stay home.

I’ve been excited to go shopping for new decor for my new home. I’ve been here about 4 months and have a lot of decorating to do. I’ve been trying to talk myself into going to this one store for the last 2 weeks (at least) and I was sure today was gonna be the day. I psyched myself up all day yesterday. I was going to get up, get dressed, and go to the store. As soon as I opened my eyes this morning, I knew I wasn’t going anywhere. I immediately felt sore and achy. Sometimes it’ll pass after a few hours so I went downstairs to make myself breakfast. That sealed it. I felt so weak and like I was gonna faint at anytime. I could not stand for more than a few minutes. I definitely can’t go shopping if I’m this weak. I was so disappointed and discouraged! I REALLY wanted to go shopping and pretend to be a normal person. I tried so hard to convince myself to actually do the thing, but now my body was making sure it didn’t happen. This is when I really feel trapped. I can’t go anywhere even if I was mentally ready to.

Because I’m feeling so bad today, I stayed stuck to the couch laying down for about 80% of the day. I got up a few times to feed myself and the kids, but that’s mostly it. Whenever I’d get brave and try to force myself to do something, I was rewarded by almost passing out. So I am stuck in my coffin of a couch today. It often feels like I’m already dead when I’m this dysfunctional and useless. All I can do on these days is stare out my window or nap. I often can’t even read because my arms are too weak to hold a book. I just lay there like a dead person staring off into space. I hate it! This is when I feel like my life is just wasting away and depression sets in. I’m not depressed today, but I’m sure its coming if this keeps up. I try my best to keep a positive mindset but its hard when this is my life.

I miss doing things. I miss going out being a normal person. I miss making plans and actually following through on those plans. I miss not being bored all the time. I miss having a life!! I miss being fun and energetic. I miss all the time I should be spending doing things with my kids. I had so many big plans for my kids and I can’t do any of it. Even something as simple as taking a family walk on my street, and meeting my neighbors. I miss all the normal things. It breaks my heart. I’ve learned to accept it at this point. I’ve accepted my defeat, but it still hurts. I am disabled and that’s just how it goes.

I lay here, staring off through my window wondering how long it will be this time around. Am I gonna be stuck here for 3 more weeks or 3 more months? Am I going to feel better in time for next spring so I can plant my flower garden? Am I going to be able to enjoy my 40th birthday in February or will I be laid out feeling like I’m dying? Everything is so uncertain. I can’t predict one day to the next? I have to have no plans ever and just wake up each day and wait to see what kind of day I’m gonna get. I mostly just exist during flares. There’s not much else to do. It’s excruciating!

I’ve been doing research about how to live a fulfilling life at home. I guess everyone got a dose of this with the hard quarantine earlier this year. This made for an abundance of articles on the subject because for the first time ever, all the normal, healthy people out there got a taste of chronic illness life. Everyone suddenly had to figure out how to not go insane with boredom and loneliness, just like we do most days. So yeah, there were lots of articles. The biggest thing that appealed to me while being stuck at home was to have frequent company. Covid does complicate this one a bit, but it is something to try in the future. I still have to limit these visits a bit, but something is still better than nothing. If I can only handle a 2 hour visit once a week, then its still better than no visits ever. Am I right? I read a lot about online video meetings, but I don’t care for those. It’s too hard to follow along when 10 people are all trying to talk. It’s dizzying for me. I prefer small, intimate gatherings. I will just have to try to push through how bad on feeling on the planned day and just get through the 2 hours. If I feel absolutely terrible, I’ll just have to reschedule. It is what it is.

Anyway, I’m still trying to figure this whole thing out. I haven’t quite learned to properly live a fulfilling life as a housebound person. I still wish things were different so I will always hold onto what I’m NOT able to do, rather what I AM able to do. This is all part of the grieving process. There are a lot of what if’s, and should be’s but all that does is suck away any good that’s left. There is definitely some good that comes from this. I had to look really hard, but it is there. One thing is I truly appreciate the good days. On the rare day when I feel almost normal, I enjoy it to the max! I get dressed, go out, have fun, and I’m just filled with absolute happiness and excitement. I wouldn’t be able to get this much satisfaction out of such an ordinary thing. Because it’s such a rare thing, I can really appreciate it! Another thing is I celebrate small victories. Cooking a proper dinner is a huge accomplishment and I feel really good about myself for it. Doing any home project is always worth celebrating. Something as simple as putting all the clothes away, or organizing a messy corner. If I actually get out to the store is a major event. I feel like a damn superstar if I go to multiple stores in one day! Even things like sitting with my kids (because that’s all I can do) and watching a movie or having a nice conversation are special. It’s nice to have the time to spend with them. I try to find something good everyday. I try to give myself something to accomplish each day so I don’t feel so useless. Everyone needs to feel useful and productive from time to time. Especially when I’m the mother of the house. That’s basically my job. I’ve just had to adjust how I do it. I’ve really learned to love the little things. I love watching nature outside my window. I now take the time to feel the breeze and warm sun on my face. I listen and smell and feel more than I did before. Being forever sick has taught me to slow down. I can focus on the simple things that are often missed by everyone else. I consider that a very special gift!

So here I am, laying on my couch again. Although I am sitting up to write this. I will need to lay down in the next few minutes. My bones are hurting and it is getting harder to hold myself upright for much longer. I’m looking out my window as the evening light shines on the trees in my back yard. I love to watch the sky change colors as the sun goes down. Its something I’ve learned to enjoy through my prison windows. I also get to think of what I can throw together quickly to feed everyone dinner. I can’t order takeout again because I already did a few days ago. That stuff adds up very quickly. I’m also thinking about the endless mountain of laundry that I still have to wash before tomorrow. I’m pretty sure I still have a wet load sitting in the machine since this morning.

Each day is the same. Wake up, lay around, get everyone to bed, sleep. Do it again the next day. Just existing each day is very boring. It is soul crushing. Each night that I go to bed I whisper to myself “please let tomorrow be better” and I hope for the best. One of these days, tomorrow will be better, even if only for a short time.

Published by Meredith Gallie

My name is Meredith. I’m a mother of 4 boys living in NY on Long Island. I suffer from a chronic illness called Sjogren’s Syndrome. It is a debilitating autoimmune disease which has wreaked havoc on my body, causing me to become disabled and mostly housebound. Each day for me is about survival and caring for my children. My older boys are twins, one of which has autism. These are challenges that I must try to overcome each day, but I am thankful for my family. I’m thankful to have a loving husband who is able to help and provide a comfortable life for us. We are thankful for his hard work and dedication. I’m not a writer by any means, but I wanted to make this blog as an outlet for all the noise in my head, as well as something to focus on to keep my brain from melting into a pile of mush. I also hope my thoughts and experiences will help others out there with similar struggles. Some of my posts will be like a public diary, some will be advice and inspiration. Some posts will be dark and sad, some will be uplifting and inspiring. I’m just going to write according to whatever mood I’m feeling at the time. It’s a bumpy ride, but hopefully you find it helpful or entertaining. Enjoy!

4 thoughts on “Imprisoned Again

  1. I find the weather plays a huge part in how i feel. I can’t wait til i am able to retire to somewhere warm. But for now i suffer. I hope my body mind and soul can hold out. Hang in there

    Like

  2. Our minds are never really at rest are they, we wander in our minds, should I go there? can I get this done? Will i feel better tomorrow? It goes on and on daily as our lives are not normal but i will say I’m accepting my new normal more than ever before….i might not like it as I miss the old me, miss my old life but Iv stopped thinking of the past and am trying to focus on my future and the little life I have with my family. And of course our world is upside down with this pandemic which doesnt help either! I struggle with company longer than 2 hours, my ears cant stand the noise and I start getting anxiety…..its like I cant even cope with company!

    But, I will say I’m trying my best and Iv stopped all the times Iv had negative thoughts about myself. I cant do it anymore.

    Your YouTube blogs and this blogs really have helped me as I see you like me, your a fighter and an optimist. You will not let this illness best you or your family. Take care ❤

    Liked by 1 person

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