Normal is Sweet

Remembering back to the year before I was diagnosed with RA, the overarching theme was exhaustion.  Any errands I had to run occurred between breakfast and lunch, and were limited to three stops. More than three were more than I could manage, and by lunch time I needed a nap and had to take it easy the rest of the day.  When my husband left for work in the morning, his parting words were always, “Don’t overdo it.”

How different things are now!  I’m so happy that I received a prompt diagnosis and my rheumatologist kept making adjustments to find effective treatment.  It’s taken a while, but I’m finally able to have a somewhat normal life.  My schedule this year looks like something anybody with five kids might juggle, and not something carefully crafted to accommodate time for lots of naps and resting.

Schoolwork takes place first thing in the morning, or whenever there’s a few spare minutes.  We also have extras:

Monday1: 12-3 music lessons
Tuesday: 10-11:15 music lessons; 11:30-4:30 swimming; 5:30-9 scouts
Wednesday: 8:30-5:30 horse
Thursday: 9:30-11 nursing home; 11:30-4:30 swimming
Friday: 12-1:30 music lessons; 3:00 guests begin arriving; 6-9 teens invade our house

This is a testament to the fact that my meds are working.  There is no way I could have managed a schedule like this a few years ago.

I definitely notice that the Cimzia is wearing off a few days before my next injection is due, but I’m okay with a couple days of being tired if I can have minimal pain and the energy to lead a full life the rest of the time.  The meds do wear off, though.  Saturdays are okay if I pace myself and say home in the evening – unless I go out on Friday night.  If I go out Friday night, Saturday will be like the days pre-diagnosis.  This means that I rarely go out on Friday night (even on those days that our house isn’t overrun by teenagers), and never go out on Saturday night.  Some might think that sounds awful, but if I could spend time with anyone, I’d choose to be with my husband, and we don’t have to go somewhere else and spend money to be together.  An evening at home is a great way to spend time together.  So, although the Cimzia wears off, it rarely causes a problem.  I enjoy a few quiet evenings at home with my family, relax on Sunday, and everything works out fine.

There were times that I despaired of ever feeling normal again.  I’m happy to report that almost-normal is a possibility.  I’m loving it!

___________
1 Times are accurate, days might be rearranged

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6 thoughts on “Normal is Sweet

  1. So happy to read that the meds are working and you’re back to higher energy. I totally understand, the fatigue level pre-diagnosis had become a new normal for me, and now that I’m feeling better, I remember what it’s like to have energy. :)

  2. What wonderful news for you, and it does others good to know what is possible for some. While I could not handle your schedule, I, too, have seen improvement over the last year. Like you, my medication (Enbrel) begins to wear off before the next injection, although the Plaquenil I also take helps stretch it so that I’m not quite back to before diagnosis. While I have had to turn down writing jobs that require hard deadlines the day before an injection, I’ve been able to juggle things around to make my life workable. I know from my own experience that doesn’t mean that you are free of exhaustion and pain, too, but I can also tell that you, like me, are savoring any move toward normal instead of away from it.

  3. So glad Cimzia is working for you and you are finding a sense of “normalcy” now. I like how you’ve mapped out your schedule…stick to it and you’ll be ok! Are you enjoying summer in Washington state? Ha! I’m ready for some heat. I’m back to blogging again after a long hiatus.

    • Musefulness, it’s good to review “before” sometimes, so we recognize how far we’ve come. Glad to hear the meds are helping you.

      Cathy, I know you remember what a difference it makes. Good to see you again.

      Linda: Fortunately, summer is almost here and I get a break (I’ll be more of a traffic-controller than a chauffeur & teacher). I don’t think I could handle that schedule indefinitely. Not sure how long you’ve been on Enbrel, but when I first started it, it wore off – after a few months, it started lasting the full week.

      Andrew! Hi! I noticed the other day that you’re writing again, but haven’t made it to your site to read yet. Soon, I hope. Summer in WA? I think we’re supposed to get three days later this week ;)

  4. I’m so happy that you’ve had that kind of success with your treatment! I’m a bit envious since I’m still in that pre-diagnosis, pre-treatment stage (not for RA, but for whatever it is they eventually figure out) and oh, everything is so exhausting. But stories like yours give people like me hope, so thank you for sharing it! And I hope the Cimzia continues to work for you to keep you in a good place!

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