mama whose curiosity knows no bounds

Posts tagged ‘fatigue’

Sabbath? no not really

For the last 3 months or so, I defined Sunday as my “rest day” as though it is a Sabbath. But in my case, it is merely “mental and physical health day”.

On Sunday I do nothing I have to do, I do something that I want to do –like blogging, or when I feel good enough, sewing. Most of the time, I spend the day in bed, just resting, doing nothing.

Now K is in group home, most Saturday I visit him, unless flare-up or other stuff interferes. Even if my husband drives for most of the time, and in cover myself with UPF50+ shawl, still 4 hours or ride is stressful to my body. That made it start my rest day habit. It allows me to recharge myself so I can go forward with the week ahead of me.

During weekdays I now have to wake up an hour earlier than before, thanks to S going to middle school that starts an hour early. I think this triggered the development of this habit.

Of course it needs cooperation of my family, and luckily, I have. I don’t cook – I often spend all day eating only cereals and my husband and my daughter enjoys meat dish – like bacon and spinach. And now S is old enough, I can ask her to prepare Monday’s lunch – or she will have “hot lunch” at the school – and she always opts for preparing one, even if that means that the lunch consists of three cookies, a cheese stick, and a cupful of fruit. Today she prepared cheese pasta with some vegetables and apparently ready to go.

I don’t do dishes – it’s always my husband’s job. I don’t do laundry, even if that means I have to do two loads on Monday.

This turns out to be quite a good arrangement.  Interestingly, no matter how much I sleep during Sunday, I can sleep through the night. So I just think I’m catching up, even though I usually sleep seven hours every day. I sometimes wish if I could do with less sleep but that was not the case. So I try to make the most out. 

I think many people with chronic illness can make use of this rest day.  It also helped me to say “no” on everything that happens on Sunday. 

When K was at home, Sunday used to be the toughest day of the week. He woke me up at around 8, asking for food. Then ask me to stay with everything he does, even though it means stimming and immerse himself in his world. Because I couldn’t take him to public place out of fear of meltdown, he demanded to go out for a ride. So I drove my neighbor, 30 minutes at a time, sometimes stopping by a gas station to buy his favorite junk food so he learns to stand in line and wait until I pay for the item before he opens the bag. We usually repeated it for 3-4 times a day. What a waste of gasoline! Then whenever he appears to enjoy himself, I sneaked out to do a week’s worth of grocery shopping. Prepare dinner and next days lunch, give K his sleep med, and had harder time making him fall asleep because I was too lazy to wake up as the same schedule.

As I write this, I wondered how I managed THAT.  Probably the sheer force of will/situation.  I realize how much I stressed myself. 

I’m finally learning how to rest myself. And I’m hoping that this will lead to better self for my family. But only they know if they are happier or not with me in bed all day.



Flare got me, sis!

I’m under another lupus flare attack. I was really tired yesterday and I thought it was all because of the busy week. It was a beginning of flare.

It almost always begins in my case a stressful event or minor infection. This time I think is the latter. My daughter, who is really heathy child was sneezing and sniffling a few days ago. We thought it might be just an allergy. But I had a mild sore throat at the same time. Next day, it seemed to clear up. On Facebook I see a lot of posts about “back-to-school illness”. Well, two days of sniffling was an easy one, after all.” Again, I forgot what that would do to me. It seems like I can keep infection away really well by my super strong (innate) immune system, yet that will fire up my entire immune system, especially autoimmune one, to overdrive. I usually see the symptoms of flare after two days after infection symptoms disappeared. 

Now I’m fatigued to the bone, my entire body hurts, especially elbows, hand, and mid back. My extremities are swollen. I thank iPad and this BlogPad Pro App. I can’t move fingers independently. So I move each hand with either index finger or middle finger to touch. I can’t sit straight. so I lie down on bed. I will remain this way for a day or two. Then I usually go back to normal.

I’m glad I have an understanding family. It wasn’t like this until I got the definitive diagnosis of lupus. And I’m aware that many my fellow “lupies” suffer by suspicion placed by the loved one that “she is faking it”. I was able to ask my husband to drive my daughter to gymnastics practice. Although asking everything i do is still hard – after all he is tired as well as a week worth of hard work!

Between typing, I raise my hands up high to reduce some of the swelling. My pillow is not high enough to keep my legs up. I’ve got to sew something. But after my body is mended.

I wonder if there is anything I could do to keep my immune system low at the stage of infection. I already take Plaquenil, Methotrexate and very low dose prednisone. Upping the prednisone in advance must help though it has a risk of prolonging the infection. Rheumatologist usually don’t allow such “preventative use” of prednisone and that makes sense. I just wonder…in time like this…there are so many supplements that claim to reduce inflammation. I take fish oil, turmeric, and eat lot of ginger. None of them is helping me.  I just, just wonder, if any anti inflammatory can prevent…since I can tell it’s coming.  It’s as though I can see the air strikes coming but no where to hide or run.

Of course the most frustrating is I can’t go see K. I wanted to bring his Kakinotane (his favorite spicy crackers) my brother shipped me from Japan. A positive is that my husband put the visit on his calendar next Saturday, so I’m guaranteed the visit a week from now.

Stay positive. Lupies.



Long, winding road – my lupus journey #2

So my fatigue was not due to allergy.  Around the same time, I started to notice various symptoms.  Like:

  • drooping of my head/neck – in late afternoon, when I drive to pick up K and S from daycare, I noticed that I was unable to hold my head up.  I thought something might be wrong but again dismissed as being busy.
  • double vision – this scared me. I could see things far far away was one, but objects mid-to-short distance, say, 30 feet, looked double.
  • attention deficit – this was not new to me.  I always had scattered mind. By that time, I was tested for it, and result was “not ADHD, but not normal”.  Counselor diagnosed me with depression to explain. But by that time, it was getting worse.

Because my web search associated double-vision with scary stuff like brain tumor, I went to see my nurse practitioner.

She told me, “you know what? it is some thing called “old age eyes”.  Get a pair of reading glasses from anywhere, maybe Wal-mart and you’ll see it will be all gone.”  I also told her my extreme fatigue.  Since she knew K was autistic and could be very stressful, she told me that was typical symptom of depression and subscribed Wellbutrin for me.  Let me be clear, she was a wonderful, compassionate NP.  I really liked her.  But I couldn’t help but feel being dismissed as exaggeration.

Reading glasses of course didn’t help, although reading a very small letter was slightly better with it.  Of course, that’s the purpose of reading glasses!  But double vision continued.  So was fatigue.  I visited again and explained my symptoms.  She now realized it might be something serious – more specifically, multiple sclerosis, and ordered MRI and some blood tests.  Both turned out to be negative.  Including ANA, which is almost always positive for lupus patient.  This will haunt me for a long time.  She increased the dose of Wellbutrin XR to 450 mg, which was maximum.  It helped in that I became more alert and agitated, somewhat covering my fatigue and lack of concentration.

With frustration and the difficulty getting to see her – if you are sick and have to wait for 2-3 weeks, you will be frustrated! – I switched to see an MD.

To be continued….


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