Life · Uncategorized

When absolutely nothing goes as planned.

When you (or a loved one) is chronically ill, you learn to deal with changed plans. It is just part of adjusting every day life because you’re living with something unpredictable. That doesn’t necessarily mean it is easy to cancel or change plans or to accept  that things aren’t working out the way they’re supposed to.

Personally I find it harder when the reasons plans have to change or things can’t be done are completely out of my hands. I find it easier to adjust when I understand the reasons or when at the very least I can manage a way to modify and still get things done. I’m a control freak (admitting you have a problem is the first step right?) and that can make it really frustrating when things start falling apart.

Last night was the perfect example of what I can’t handle. First our parent-teacher interview became our worst nightmare, Buddy is not doing well in school. He’s academically perfect, far ahead of his class, but his behavior has been horrid to the point where he is starting to burn a lot of bridges with the staff at the school and us as parents. After getting home, a rushed supper and massive onset of abdominal pain, the two youngest were rangy and grumpy. It was a disaster trying to get them all to bed.

Last but not least, the cake…. my ‘red’ caboose fondant went pink, my steam engine looks like a boot, but honestly I was still at the “this is ok, I can fix it, I can make it work” phase. Until at 11:30 at night while in the middle of whipping up my last bit of buttercream for the crumb coat, my blender stopped working.

I had hit the point where there’s nothing I can do, modify or adjust to continue on. It was game over for the night.

After sitting down and being pissed for a little, I started to laugh. After all that, a hellish day, my mountain of different illnesses played very little part in any of it. Sure I was exhausted, my joints ached, my head was pounding and my anxiety was making a mess of my pulse, but the real problems of the day could have happened to anyone.

While I’m still pissed that my wonderful masterpiece has turned into a shoe followed by some blobs, that my children are all acting like little Satan spawns while we’re supposed to be celebrating and that we’ve officially entered into the realm of special circumstances with the school, I’m a little glad.

NORMAL healthy people have problems too. It’s not sunshine and rainbows 24/7 for them either. EVERYONE has trouble sometimes, has to cancel plans sometimes, has things not work out as planned sometimes.

Having health complications can sometimes make it seem like somehow everything comes back to being sick. It can be so consistently in the way of regular life, that when something not related gets in the way, it seems unreal.

As far as my last day has gone, it’s still unbelievably off schedule. I was again surprised with a visit from the mother in law, the train cake is still a work in progress (so now it’s a shoe with windows…) and after it all, my lupus is starting to actually play a part. My hands and wrists are now beyond pain, they’re numb and tingly along with it.

Right now I am finally taking a break (one of many over the next few days I’m guessing), letting my meds kick in and scouring pinterest for tips and tricks on how to finish up Little Dude’s birthday cake with as little effort and risk as possible.

However maybe just for chance’s sake, lets say we’ll play it by ear, no plans to risk breaking…



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