Yesterday was a cruel tease.
I was fine the entire day. There was a momentary twinge of pain in the morning and the beginnings of a migraine after seeing a movie that was countered by Excedrin, but other than that I was fine.
It was a slow day. I woke up around 10:30 and took a three hour nap in the afternoon due to some confusing exhaustion (how can I be tired when I sleep so much?) but there was no pain. I read a lot, planned out a menu for the week and a grocery list and by the middle of the afternoon I was beginning to hope that whatever this mystery is, had finally reached it’s peak and my body had finally found a way to kick it’s ass. After the movie I was dizzy and my stomach was feeling queasy but it wasn’t anything that couldn’t be helped by taking a deep breath of the cold fresh air, and holding on to Will’s arm. Finally a good day.
I woke up this morning so dizzy and queasy that it took me ten minutes just to sit up. I shambled to the bathroom and waited to be sick, but no relief. It’s hard to get food poisoning from saltines, mashed potatoes and a little bit of popcorn which is all that I ate yesterday so I’m guessing that this is another manifestation of my mystery illness.
It is so frustrating to not know what’s going to happen next. To not know if I’ll be able to get out of bed, or be able to do all the necessary grocery shopping. Not knowing is the worst.
This weekend, hell or high water, Will and I are going to Chicago. I don’t care if I’m sick the entire weekend, it’ll still be good to see everyone. I miss my friends and family.
Being sick is humbling. Being sick is exhausting. Being sick is boring.
I’ve been sick for three weeks now and it’s driving me up a wall. The doctors have no idea what is wrong with me and so I spend my time either in pain, hopped up on painkillers or waiting to be in pain again. Every once in a while, I’ll go just long enough without an episode (six or seven hours) and I’ll start to hope that what whatever this is has passed on for good. But it always comes back. It’s like whatever this is enjoys taunting me with the idea of freedom.
I’ve said it elsewhere, so I don’t think it’ll be a shock to anyone who reads this, but I’ve taken a leave of absence from work. Whatever this is, has no respect for deadlines. And even when I’m not in pain, I’m usual loopy as all get out. It’s incredibly boring and demoralizing. I love working, and now not being able to? The first half-day was nice. Just catching up on sleep and etc, but I quickly run out of things to do. Though I have half a dozen craft projects around the house that Will is allowing me to leave out so when I want to work on them, I can. It’s hard to take on work when you don’t know for sure when you’ll be able to work on something. Thankfully my bosses are amazing and have told me that when I’m ready and well – and _only_ when I’m well – they’ll have some non-deadline work to do at home. I’m so lucky to have them.
Going to see doctors day in and day out is difficult. Especially since most of them end up saying flat out “We have no idea what is wrong with you.” The new GI specialist I say this week suggested a new drug this week and it was disastrous. I was on the floor in pain for three straight hours. You know what is worse than the doctors not knowing? Doctors making it worse. It’s not that I’m mad at them. I know they are doing the best that they can with this mystery, but it’s still hard to deal with.
I think the worst part of all of this is how lonely and guilt making being sick is. If I didn’t have friends online that I could talk to every day, I would probably lose my mind. Will is great for conversations, but he’s away the majority of the day and the cat is super great at cuddles, but that’s about it. I miss the people from my office. I miss being in the middle of a crowd. I just miss interacting with people. Will and I went for a walk last night down to the edge of the island which is my favorite place. It’s got a great view of Brooklyn and the Brooklyn Bridge and I just love it. There are a few photos from the area that I’ve posted online. It was fantastic to get out and see the beautiful view and get fresh air, but by the end of the walk, I felt guilty. I’m sick. Shouldn’t I be at home in bed not enjoying life? If I’m well enough to go on a walk to see this beautiful thing, should I be well enough to go to work? It’s a hard thing to grapple with. I’m going to see if I can go to some museums in the area that I’ve never made it to before. Things I always said “Oh I’ll do it next time I’m here visiting Will” know that I’d be just as greedy about time with him the next time around. I can go see those right now and Will thinks I should. I may be loopy, but when has that ever stopped someone from enjoying art? Hell, sometimes it helps them understand it better.
This is my life right now, and I have to say, I’m not a big fan.
I am so tired. I am exhausted and frustrated and I just woke up.
I have spent the last week dealing with a mystery illness that causes extreme abdominal pain, dizziness and forced bodily functions that nobody wants to have to deal with. Ever.
I have seen three doctors this week, been to the ER, Urgent Care and a HMO office. I’ve gotten a CT, sonogram (owwwwwwwww with a tender tummy) and three variations of X-Rays which included drinking an annoying amount of really disgusting barium. I’ve had so much blood taken for tests that all of the veins in my hands have collapsed and it was a joke trying to get access to the ones in the crook of my arm. I was in so much pain and so exhausted that I only went in to work on Thursday and even then had to leave early. Not such a great thing as an intern, my bosses are sympathetic but that is only going to last for so long.
I am so tired of this.
I’ve been dealing with ‘episodes’ of this mystery ailment since middle school. However, those episodes were few and far between and always happened at night. Not so much on the fun side, but at least I could deal with it in the privacy of my own home with family helping out and taking care of me.
Over the years, the meds that I’ve been taking for this have stopped working. Episodes used to be solved with a few Advil/Aleve/Whatever I could grab out of the medicine cabinet faster and a hot water bottle. That stopped working and so I moved on to drugs from the UK that a friend of mine recommended and that he brought me. That stopped helping earlier this year. I’ve tried pain killers and non-traditional medicine and while those help a lot, there is only so long that I can go around being drugged out of my mind. There is no warning before these episodes, one second I am fine and walking around, the next, on the floor wishing for unconsciousness.
The episodes this week have been fast and furious and have left me completely spent. I don’t know how long this is going to last, or if they will ever figure out what is going on and be able to ‘fix’ it.
I am so completely exhausted.
I had a CT scan scheduled for this morning. I figured I’d show up on time, lay down inside a giant magnet, get up, and get on with my day.
Not so much.
My schedule has now been pushed back by several hours and the contrast they gave me is making me feel a little bit more like death every minute. What a glorious start to the day.