Another Friday

Today started off like most lately.  I woke up feeling sick and in pain.  My stomach was cramping and feeling like I had eaten rocks the night before. I spent most of yesterday eating as much as I could handle since I’m trying desperately to gain precious weight back.  My body ached and did NOT want to get up out of my warm comfortable bed.  My alarm screamed at me, reminding me that my kids needed to get up and get ready for the school day.  I normally have to wake up one hour earlier than everyone to medicate my 11 year old autistic son.  He is completely unable to function until his meds have had 45 mins to get into his system.  It’s taken almost 3 years of experimenting, but this is the best cocktail of meds for him so far.  He’s happy with it and we’re happy.  I drag myself out of bed and slowly walk down the long hallway to his bedroom.  Once he’s awake, medicated, and made comfortable, I go back to my room and lay in my bed for the next 30-40 minutes until I have to get everyone ready.  If I can’t fall back to sleep, like today, I stare out my large bedroom windows at the beautiful landscape and watch the sunrise.  I’m facing North East so I get a beautiful view of the sky with the top of the tree line as a silhouette for the morning colors of the sky.  It is so peaceful and beautiful and I am thankful to be able to see it.  The rest of the morning routine follows as usual without any major complications.

Today I am determined.  I must go to the library to pick up a book that came in that I reserved a few weeks ago.  I normally don’t go anywhere, but this was a quick 10 minute trip and I had to do it.  I had to have something to read and I had to feel like a person who was capable of accomplishing something, anything!  I had to feel like everyone else even if only for a short time.  I immediately regretted leaving the house, but I got it done.  I came home exhausted and in pain.  Still feeling sick to my stomach, but I did it!  I slowly made myself breakfast and then planted myself on the couch where I’d spend most of my day.  It’s where I spend most of my days.  I am in a new flare so I am stuck off my feet for about 90% of the day, only getting up to do necessary things like cook (basic foods), eat, bathroom and going outside to get my kids on and off the school bus which happens to be at the end of my driveway.  If I’m feeling brave enough, I talk myself into doing other minor things around the house like maybe wash a load of laundry, load the dishwasher, or some other silly but necessary task.  This usually results in me having to rest for a few more hours.  It’s pathetic, but it’s my life during a flare.  My flares generally last weeks to months.  

Today I also made up my mind that I was going to make a proper dinner.  Cooking dinner is a task that I’ve mostly abandoned, but my guilt for my family has overtaken me and I’m trying to cook at least a few times a week if possible.  My husband can’t cook so my poor kids often get stuck eating garbage takeout, fast food, or nonsense from the pantry or freezer.  After resting for 2 hours on the couch after breakfast, I forced myself up to start cooking at 11 am.  I was using the crockpot so I needed to get it cooking before noon.  I’m making a braised pork loin.  I haven’t tried this yet so its an experiment.  Hopefully it turns out ok.  

I’m quite frustrated at my lack of progress since moving into this house nearly 3 months ago.  I still have boxes to unpack and things to organize.  I was doing great for about 2 months, but then this flare hit and here I am.  I hate the lack of progress.  I feel so frustrated and useless.  I know it’ll be a long time till I feel better, but I’m taking it day by day and trying to remember to use mindfulness to get through it all.  I try to accomplish at least one thing each day. I accomplished 2 things today. Going to the library and cooking dinner. I celebrate small achievements.

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!

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