Thursday, June 23, 2011

Check In With Me Tomorrow

I fill up my pill boxes every two weeks. How about y'all?

I adamantly resisted using one - not to mention TWO - of these things. They remind me of my public health nursing days when I'd spend hours visiting clients in their homes and filling their weekly pill dispensers. The first time that I clicked open my very own set, I felt.....weird. Like I should smell of lavender, be wearing polyester pants with elastic waistbands, and have lace doilies on all my furniture. But now it's a routine task to which I don't give any thought. Until yesterday, when I realized that it was time to fill them up again.

I had no clue why when I looked at those two empty plastic containers I suddenly burst into tears. I have been filling the stupid things for what seemed like forever. Ah, but actually in all honesty, I have a pretty good idea....

It didn't help the situation that I was having a crashy day and had already progressed through the early phase of giddiness and was well into the woe-is-me-my-life-sucks phase. And then my mood goes downhill from there since I inevitably become even more crabby because I realize that I am far too well versed in how I behave when my energy bottoms out. After which I go become comatose for several hours and thankfully wake up feeling somewhat more optimistic.

I knew that even if I had to spend the rest of the day horizontal, I still needed to muster up enough energy before hitting the comatose phase to fill those stupid boxes. So while I was uncapping and counting and clicking, two things came to mind; First - that there were a very large number of medication sitting there in those little compartments. And secondly - I realized how drastically my concept of a two week chunk of time had changed. As I looked at those fourteen boxes to fill with pills it seemed not so long ago that my pill box was nonexistent. Instead, I had fourteen days twice a month that were filled to the brim with all sorts of great stuff; which definitely did not include taking time to count out a zillion capsules, pour handfuls of white pink yellow and brown pills, or gauge the content of two inhaler canisters.

I know that I should not indulge myself in those sessions in which I close my eyes and allow myself to sit back and reminisce about my pre-autoimmune days. To remember what those fourteen days on a monthly calendar looked and felt like: every day packed with work and family and play and hobbies and church commitments. To remember what it felt like to get up in the morning fully expecting that I would indeed complete all those things listed on my white printer paper calendar sheet taped prominently on my refrigerator door. To remember what it felt like going to bed in the evening knowing that I had a full day behind me and was thinking about what was in store for me on the next. To go to sleep feeling bone tired but knowing that I would awake the next day with my energy renewed. I'd wake up, brew myself a pot of coffee and dive into my day.

Where did those days go? I miss them so much. Geez. I shouldn't even be writing this since it makes me morose all over again.

If I were writing a self-help book, this would be the part where I'd start a new chapter - the one that tells readers to take heart. That life has changed, yes. But that change is just that. Change. Not better, not worse, just....different. And that a whole new world awaits them if they just accept the realities of their limitations and look deeper into this new life that they have acquired.

Gaaah. What a bunch of hooey.

Oops. Sorry.

I really don't mean to be so negative. But my goal for Reasonably Well is that in telling of my experiences with Sjogren's syndrome that I am completely honest. And truthfully, I have good days and bad ones. Mostly my days are good, but there are also stupid, dumb, sad, rotten, crummy ones. The fact that they exist is bad enough, but it's even worse when I just can't tell when those days will plunk themselves onto my now very empty white printer paper refrigerator calendar. I can't plan for them. I have very little warning of their arrival.

It would be so much easier if while filling up my pill boxes, I could just uncap a white bottle with a prescription label on it that says "stupid dumb crash and burn days", and while holding my nose in disgust, drop one into my two week planner. Just one. And then I'd know when it would be, plan to stay in bed for that day with my covers pulled up around me and my schnauzers, and the next day, get up and on with my life.

Well, now. Hmm. I wonder what would happen if I DID just schedule one day twice a month to spend in bed with the schnauzers? Would that stave off having those stupid dumb crash and burn days from sneaking in on their own?

It's certainly food for thought. In the meantime, I'm going to go become comatose for the rest of the day. And when I wake up tomorrow, I promise that I'll be less grumpy.......really, I will. Yeah...I know that this black gloomy cloud hanging over my psyche will be gone tomorrow.

Maybe my self-help book chapter has some wisdom in it after all.


Leslie at SugarAndSpiceADK. said...

I, too, mourn my old life, when my energy wasn't so darned limited! Great post, Julia!

Tricia said...

I get it Julia. It's especially bad when you know you have to step up (in my case packing and moving by a certain date) and don't have much wiggle room for crashes. If it helps at all we can relate and wish you many more good days than bad. I think you handle it with great grace!

Jenny P said...

Ironic, I was just recently writing/thinking similar things about rest...a) I commented to someone how I now rank getting rest & "crash time" as high priority to-do items, and b) contemplating the fact that I do, actually, TRY to schedule some crash time when I can (not usually successful, but I try).

I'm not having the best week, and despite UII's best goals & intentions of being positive and hopeful...right now I just want to fly to the west coast w/my pug, find the biggest vat of hot chocolate I can so you, me, 2 shnauzers & a pug could spend the rest of the day liking our wounds in good company.

You and I gotta get our biorhythms straightened out, girl.

annie said...


I think we can all relate in varying degrees to what you're saying and going through. I think it's normal to feel sad,frustrated, and angry at the life we have now as compared to our old one. I try to eat well,and rest and take meds and I still have zero energy,big gut problems etc.
Yes, it makes me cry,makes me angry and I have bad days, but I always have hope for tomorrow. I think it is psychologically and physically good to vent..I know I feel better afterwards when I put things in perspective again and start being accepting of this life now. Of course some good chocolate always helps.

Amy Junod said...

While reading this after having had a few bad days myself I found myself chanting "Amen" and "Go Sister" I was sitting at a rally or something. (and I totally am not the shouting or chanting type)

I've found your honesty about this stupid disease to be a great comfort. It's what I love about the blog...the good, bad, ugly, funny, informative, sad and silly. There really is healing power that comes from knowing you're not alone in the battle. That's how I feel anyway.

Hope you get to feeling better!

sue said...

Hi Julia

I hope you have a better day soon. I am sort of happy to know that I am not the only one to have days like this. I use one of those pill boxes too. They are useful but they don't exactly boost your morale. On a brighter note, my son with special needs graduated grade 8 last night. His class gave him a standing ovation. I am still crying but at least my eyes aren't bothering me today.

Blogger Mama said...

I am always a supporter of a pity party. Seriously, every once in awhile everyone needs it. It's cathartic and helps us move on. And, of course, it helps knowing that there are so many others feeling the same way.

Hope you wake up feeling better tomorrow! :o)

Anonymous said...

Yopu can indulge yourself a bit Julia, it's normal to want those days back, because they were good ! It means you had a great time back then. I doesn't mean you will not have some great time in the future. But I think it's OK sometimes to remember good things.

Andrea said...

Thank you for your honesty Julia: it makes all of us feel less alone in this disease process. I would be worried about anyone who DIDN'T mourn what they have lost to autoimmune disease - and it is great that you are writing about it so it doesn't feel taboo to the rest of us to openly say that so much about life with this disease SUCKS(when we just can't rally up the positivity we're supposed to every day).

You've raised a really good point about whether you should be having whole pre-emptive days in bed. I haven't quite done that, but a few years ago decided that I simply cannot keep going without scheduled sleep/rests/meditation during the day - EVERY day - no matter where I am. I sleep for about 1.5 hours in the middle of the day and then meditate (usually drifting into sleep) for up to an hour mid-afternoon/ evening. The phone goes off the hook, I put a note on my front door 'Shift-worker sleeping' and that's it. It is a huge chunk out of my day and I often resent it. But without it, I feel like I might pass out from tiredness and I start slurring my words. With my sleeps I can still earn a living most days.

I'm wondering if that would be something you could try too Julia? It's not a solve-all, but it does seem to prevent those shocking lows that put you out of action for days. Let us know if you try it.

Unknown said...

Every sundaymorning afther breakfast I fill my weekboxes with my medicine and than I put my bowelobstipation medicine and my bone calcium medicine. As I go tho the pharmacy I get away with a big shopper full with medicines for 3 months.

Christine said...

Great post! I have also wondered if it wouldn't be more beneficial to have a "bed day" with my bassett hound to help ward off those crash and burn days. On another note, I recently had to go back to using a pill box because I was forgetting my meds due to the brain fog issue. I used to work as a visiting nurse and it reminds me as well of those days schlepping from house to house filling up those pill boxes!!