Chronically Cray-Cray

I feel like I am losing my mind.

It’s the drugs. I have been doing better this past week–less blood, more stool, less urgency, less cramps (didn’t even take any Bentyl). So I decided I needed to try dropping my Prednisone from 40ng to 35mg yesterday.

Big mistake. HUGE.

I took my 35mg of Prednisone circa 3am Monday morning and went back to sleep, then woke up feeling tired (like chronically ill fatigued not ordinary tired), anxious and disoriented. It’s hard to explain but maybe a good analogy is I felt like an autistic kid with SPD in the middle of chucky cheese. I was freaked the f*ck out.

So what this tells me is, I was in withdrawal from that tiny 5mg Prednisone drop–this is typical. And it’s awful. But it has to be done.

I warned Mr. MLACS that I was “short on spoons” (click HERE to read about the ‘spoon theory’) and basically in survival mode. My goals were simply to:

  1. Take BG to her *very first* dentist appointment at 10am
  2. Not yell at BG for doing obnoxious toddler things that spike my anxiety and wear me out

I also wanted to sweep the incredibly dirty floors (have not even begun to catch up since my hospital stay 3-ish weeks ago) and do some laundry…maybe fold it (ha! who am I kidding? It lives in a heap on top of the dryer) and make something for dinner. Mr. MLACS told me to take it easy and just do what I can. Love that guy.

So I tried to get BG to watch cartoons or play independently while I tried to calm myself down and get my bearings. But she is a toddler and doesn’t understand when mommy needs space and quiet. I snapped at her quite a bit. I just needed to be left the f*ck alone. I just needed to stop sweating and feeling waves of panic wash over me. I just needed to escape. But there was no escape.

And BG wanted my attention. So I did my best. I talked to her about going to the dentist. I think we may have read some books or played something. And in between interacting with her I would ask her to be patient and “give me a minute”. But what I really meant was give me 10 minutes and toddlers don’t have that kind of patience so BG would start jumping on the couch or spilling water everywhere and I would start to lose my sh*t. This was our morning.

Then we had BG’s dentist appointment at 10am. It was hell trying to get us both ready, as I was physically dragging and when I have anxiety I am basically stuck to the couch, too overwhelmed to self actualize. If BG hadn’t been so goddamned annoying I probably wouldn’t have been able to pry myself off the couch, so we have her to thank for any and all productivity yesterday.

BG did very well at the dentist! So did I. To my relief we were the only ones there and the office was cool and quiet, which helped me to stay calm. There was a train running on a track along the perimeter of the room near the ceiling. BG is super into trains so she says “Alllllll abooooooard! Choo choo!” when she sees it. But when it exited to the next room and was out of sight she would whine and moan–that was like nails on a chalkboard. I very dryly told her the train will be back but she wouldn’t quit whining until it entered the room. Uhg. And I was trying to fill out her paperwork so her distracting me–when I’m anxious and have “brain fog”–makes this much harder than it would normally be. But I mean, what is “normal” for me anymore? I don’t even f*cking know.

Anyways.

So the dentist was a very gentle and soft spoken man. He had me hold BG facing me and then lean her back so her head was on his knees and he quickly and gently examined her mouth. Says her teeth look great but she has some plaque and we need to brush thoroughly along her gum line. I’m embarrassed to say that we let BG brush her own teeth and I had a feeling this was insufficient but she is happy to do it and I didn’t want to hold her down to get the job done. But I suppose we’ll have to because I also don’t want her to have a mouth full of cavities at 5 years old like I did.

BG did cry during her exam but the lovely dental assistant handed her a bag of “goodies” when she sat up and that calmed her right down. I was so proud of her because she said “thank you” to everyone and told everyone goodbye as we were leaving. I was drained but offered to take BG to the park. Instead of running and climbing she mostly played pretend–handing me handfuls of mulch to “eat”–and picked up rocks. She’s super into rocks. I’ve had to start limiting the amount of rocks she can take and keep. There were other moms with kids and I spoke to them but certainly wasn’t in the frame of mind to make friends. One of those instances where being a “chronic mom” is isolating. Luckily BG was disinterested in the kids and we stuck to ourselves, “eating” mulch and hoarding rocks under the playground equipment like a couple of trolls. It was just what I needed.

I fed BG snack at the park and we set off for home to make lunch and take a nap. I actually pulled together a good lunch for us and I felt good about accomplishing the dentist, park, and lunch. Then we cuddled up and took a 2 hour nap together. I felt a bit better when we woke up but still fatigued. I put on cartoons and decided to sweep up the floors. You should have seen the massive ball of pet hair that materialized. I’m disgusted. And I just cannot keep up with the house cleaning and neither can Mr. MLACS. I *refuse* to let our dream house get filthy like this once we move in (in August if it goes according to plan). So we will have to budget for a house cleaner to come at least bi-weekly. I feel so bad about that but I just can’t do it myself, at least not consistently–I don’t have enough spoons and I want to use my spoons for other things, like cooking and taking BG to the park.

I asked Mr. MLACS to pick up some things from the grocery store on his way home and threw dinner together–marinaded some chicken breasts in olive oil/lemon juice/lemon zest/salt/pepper and had Mr. MLACS grill them, then we assembled salads. BG does not eat salad. Also the dentist confirmed she is cutting her 2 year molars–that sh*t hurts. So I let her eat an entire container of cut up strawberries for dinner. And a popsicle.

By this time I had calmed down (it only took ALL day). Mr. MLACS was great and totally took BG off my hands so I could chill, and it really helped.

I was exhausted when we went to bed but couldn’t get to sleep until almost 1am. Then was awake from 5am to 6am to toilet and wait for my Prednisone to kick in. I tried 35mg again today but in addition to feeling like sh*t and mentally unstable, I began to have increase in pain and blood. So I gave up and popped that 5mg of Prednisone around 8am. And it helped. But this is bad bad bad that I cannot even drop 5mg at this high of a dose. My GI is probably going to say the Humira isn’t working and tell me to try a different biologic. And I don’t wanna.

XOXO,

MLACS

 

 

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15 thoughts on “Chronically Cray-Cray

  1. I am exhausted reading what you had to go through. I can’t imagine all that you have to deal with trying to function in your everyday life. My heart goes out to you. ❤

    • Thank you Isabelle! Some days are good, some ok and some suck. But somehow you get through it. I read a great quote today and to paraphrase: “You are not entitled to the hand you think you should be dealt. But you are obligated to play the hell out of the hand you are given”. And that’s exactly how I feel. XOXO

  2. Oh my goodness, this sounds too awful. I’m so sorry. Is there no way BG could go to play school one or two mornings a week to give you time to genuinely rest? And maybe a cleaner once a week even before you move house?

    • BG is registered for part-time preschool but it doesn’t start until August. Most days aren’t so difficult, thank God, so I do think we can have a good summer and be ready for preschool in the fall. But of course, if anything else happens and I’m not up to the task then we’ll make sure BG gets what she needs! XOXO

  3. Glad you are going to get a cleaner to help out! We have one every 2/3 weeks who does a thorough clean of the bathrooms & kitchen and some ironing. It’s so nice to have the help as keeping a house clean is a huge task! And that’s without a kid or chronic illness. I’m sorry about your bad reaction to lowering your Prednisone dose. Maybe your body needs longer to heal (like 6 weeks or so) before you can think of lowering the meds. x

  4. Don’t feel bad about hiring a cleaner! That was my job, pre kids and I loved it! There’s a great satisfaction about knowing you are making someone’s day by giving them the gift of time to do what’s really important. 🙂 If we could afford a cleaner for ourselves now, I’d gladly hire one!

    Sorry your body reacted so badly to the drop in dose. Amazing how those 5 mg can make such a difference…

    • Oh man I wish I was good at cleaning–some people make it look so easy but I think it’s hard and I never get things as clean as a professional does. Even my best efforts seem mediocre to me. So you can imagine the chaos when I’m sick. I’ve got to make a budget (it is so horrible–we do not keep track of spending) and find the money for a cleaner. Being in a messy/dirty house spikes my anxiety in ways Mr. MLACS does not comprehend and having a clean house is such a relief! XOXO

  5. I’m so so sorry you’re going through this! How incredibly difficult at any point, and to have your little one to care for as well. Thinking of you!

  6. I’m so sorry that these spells make it harder for you to enjoy your time with BG. It seems though that you handle sit well and do your best for her and she is happy and thriving, but reading the toll it takes on you makes me sad and angry and why can’t things just get easier?!? Sorry, my friend. xxx.

  7. My experience: I tried 4 times to get off prednisone 20 mg every other day. Could not get below 10 or 15 dropping 5 mg at a time, always going back to 20. GI said try dropping 1/mg per month (pharmacist got me lots of 1 mg tablets vs 5 mg tablets). It took 20 months to get off predisone but will be 5 years in August without prednisone. Going exceptionally slow was the answer.

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