Styrofoam Peanuts

Packing peanuts! Aaarrrggghhh. My mom sent me a box of items she didn’t have room for in her smaller apartment. There weren’t that many items in the box, but several were breakable, so they had to be packaged with  lot of space and cushioning between.  They were items that had meaning: my grandmother’s white cream pitcher with a lovely gold rim, some Japanese lacquer soup bowls she had purchased during the 2 years we lived in Asia. They were all items that held memories, and ones that I didn’t want to have just given away. My mom had them professionally packed, and the packer chose to wrap each item in bubble wrap and then fill the space between items with styrofoam peanuts. The box was large: 20″x20″x20″. If I put it on the dining room table, I could barely see into it. If I put it on the coffee table, I couldn’t bend over it. So, I put it on the floor. It was difficult to bend over the box to retrieve each item, and that was compounded by the fact that static electricity caused both the bubble wrapped items and my hands and arms to emerge from the box covered with the white peanuts. And I couldn’t just brush them off; they would just jump to another area on the bubble wrap or my arm. By the time I was done unpacking, there not only were hundreds of peanuts left in the box that I was now going to need to transfer to some sort of bag in order to place them in our recycle bin, but they were all over the floor, despite my best efforts. And, of course, still on my hands and arms. My body ached all over with fibromyalgia pain from the hunched over posture I’d had to maintain, and my blood sugar by then was low. I thus had lost all my patience, was ready to scream, and couldn’t even contemplate getting all the wayward peanuts into the trash. It’s not that I wasn’t appreciative of the items which were lovingly sent. It’s just that couldn’t the packers have found something to fill the box with other than styrofoam peanuts?????? Just saying’……………

Brain Fog

Yesterday, although I was trying to accomplish things, my Brain Fog simply wouldn’t disappear. I woke up after a good sleep, but still super tired. I got up, fed the dog and let her out, showered, ate breakfast, and then started on a series of tasks involving finances, gathering various pieces of information I was missing for one thing or another, and making phone calls. How hard can that be, right? With each thing I tried to accomplish, I seemed to hit a brick wall. Or online information that seemingly had evaporated into the ether. And my brain simply wouldn’t wake up. Partly the fibro-fog, and partly the exhaustion. And perhaps I had put too much sugar in my tea, thus upsetting my delicate blood sugar balance. When my blood sugar dips too low, my brain loses the ability to think. (I am hypo-glycemic, rather than a diabetic, although the diet is basically the same.) At any rate, after a few hours in which I had accomplished nothing, I finally gave up. I ate lunch and took a nap. Even after a good nap, and dinner, I was still having problems. I went to rehearsal, and found that my counting was off, and everything seemed to have a lag time before it sank in. As in, “Oh. In that phrase I just sang, there was a second soprano division, and I just kept singing the first soprano part. Whoops. And it’s not as if I don’t already know the piece.”

As with many people with CVID, I don’t just have one medical condition. Fibromyalgia, chronic fatigue, hypoglycemia, food allergies, asthma, migraines, CVID………. well, you get the idea. It’s not surprising, really, since most of those actually have their root in the fact that my immune system doesn’t work. But I find myself thinking back to my younger years when “all” I had to worry about was trying to control my wildly vacillating blood sugar levels. I once was able to work a full day, and come home and take care of young children. It feels as though those days existed in a different universe. Hopefully today I’ll be able to find my brain. Although if anyone finds it running around in its lost state, please send it back with Overnight Delivery stamped on the outside. Thanks.

Moderating Energy

It’s hard to try and lead some semblance of a normal life with the limited amount of energy we CVIDers have. It’s hard, when I’m out doing errands to resist the temptation to just get all the errands done, all in one day, so that I don’t have to go out again for the next couple of days in order to get the necessary things accomplished. I will be in the middle of errands, and feel my energy fading, and think, “Just 2 more stops. 2 more. 2! Can I please just get them done, and then I will have no imperatives forcing me out of the house when I don’t feel well for a few days.” Sometimes I’m so frustrated that I do just press on. But then, those two or three days that I had hoped to just stay in and get some things done around the house turn into days that I can get nothing at all done, because I simply have no energy left. So I haven’t gained anything at all.

The last two days, however, I actually succeeded in staying tuned in to my body. On Monday, my husband and I went to look at some art prints. We got tired and hungry, and then went in search of some lunch. (Itself an event, since we don’t often splurge on lunch out.) We had a very enjoyable lunch, went back to look again at the two prints we really liked, and then went home. I really wanted to work on the curtains (which I still haven’t done), but realized that there was no way that I had the energy. So I sort of collapsed. Then Tuesday, I went with one of my closest friends to see the condo she will be moving into, we looked at some more curtains (I don’t always trust my eye when looking at color, so i wanted a second opinion), then went to lunch. When I got home, I went to bed and slept solidly for two hours! Couldn’t do much else the rest of the day.

But the pay off on both of these days was that I was able to get up each of the next mornings, and actually be able to do some things. I’ve had CVID for 9 years. Sometimes I’m a very slow learner!

Another Day

Didn’t get the curtains hung yesterday, but did get some writing and research done, and then discovered that I didn’t have the necessary curtain hooks. Drove the 1 mile to Target, and was surprised to find they didn’t have the kind of hooks I needed. Despite the fact that their blackout liner package showed that one needed exactly those kind of hooks to attach the liner to drapes. Go figure. So I then drove to Home Depot, where a helpful employee not only told me where to find the hooks, but ended up following me to show me where they were. Good thing: they were in these small cardboard bins with no cutouts on the front of them, so I never would have found them. By the time I got home, I was exhausted and could do nothing else. But there is always another day. And there was a time 7 years ago where I couldn’t say that.

Tuesday’s Post on Wednesday

There are many days I can’t do much. Of course that comes as no surprise to any of us living with CVID. When I wake up and realize that it is going to be a very difficult day, I often eat breakfast in my PJs, thinking I will go back to bed. The trouble is, I often end up too awake to go back to sleep, but I still feel too terrible to really do much. So I wander around the house, still in my PJs, and putter. Then I start to do things. Things that I feel silly doing still in my pajamas: making business calls, cleaning up some stuff. Then I go back to bed in the afternoon, and don’t end up taking a shower until 3 or 4 o’clock, which isn’t bad except for the fact that I always feel better after I’ve showered. Always. Even when that is the only thing I have the energy to do that day. Even when I am hospitalized. And when I don’t shower until that late in the day, I get out of the shower wondering why in the world I waited until so late in the day to help myself feel better.

I gave that a lot of thought during the two months I had the virus that was going around this past winter, and decided to try some things. Small things that might help me feel better, even on iffy days. Here are 5 things that are helping.

  • Take a shower and get dressed before breakfast, unless I’m so sick that I know for sure that I need the spend the day in bed, sleeping as much as I can. Even if I realize after a shower and breakfast that I need to go back to bed for awhile, I can always change into some super comfy clothes, lie down on the bed, and cover up with blankets. Doing this one thing is proving to have a major effect on how I feel about the rest of the day. Somehow making necessary phone calls while still in my night clothes feels like that accomplishment for the day doesn’t count toward accomplishing anything. And many days I can do so little that i need every task I do to feel like it counts.
  • If I don’t feel like total crap when I’m getting dressed, I’m starting to dress in nicer clothes. Now that I’m not going to work, I’ve been dressing in my weekend clothes every day. That is necessary when I am really sick, because during those times it almost takes more effort than I have to get dressed at all. But I like getting a little dressed up, the way I used to for work. Getting dressed in work-type clothes makes me feel pretty, and I like feeling pretty. It also makes me feel more confident. And those clothes have just been sitting around in my closet not getting used, which is silly, because I like wearing them.
  • Make the bed. I often don’t have the energy to do that right away. Sometimes at all. But we live in a beautiful, modest, 100+ year old craftsman. As is often the case with not very large houses of that style and time period, there is no hall. Wasted space, right? (Except that that also means that there is no linen closet, and no coat closet. They didn’t have nearly the amount of stuff that we have now. But that is good. It helps me to be not quite as bad a pack rat as I tend to be.) The result of that, however, is that one bedroom opens directly on to the kitchen and the other opens directly on to the dining room. We are currently using the front bedroom which is the one that opens on to the dining room. Result: you end up seeing the bed all day long. If I make the bed as soon in the day as I am able to, (though sometimes that is afternoon) then the rest of the day I glance in and it’s nice to see something I’ve accomplished.
  • Clean up after breakfast. Sometimes I have the energy to do this, and sometimes I don’t, but if I am still looking at messy counters and dirty dishes in the sink at 4:00 in the afternoon, I get a little depressed. If the kitchen is tidy, I think, “Look, I actually got that done.” If I am rushing off to a medical appointment, the dishes simply don’t get done, and I don’t feel guilty.
  • Put on some lipstick. I’m a makeup girl. It makes me feel pretty.  If I have the energy, which is rare, I put on a little blush and eye makeup. It does wonders for my self esteem.

These are things healthy people do every morning before going to work, and they don’t give them a second thought. It is just part of their necessary daily routine. For me, they are accomplishments, and they make me feel better.

Really Struggling

Don’t know what to tell you guys.  I’m really struggling.  The second antibiotic didn’t work either, and by then, while the sinus infection was somewhat controlled, the bronchitis had turned serious.  I showed up this past Monday at the hospital to get my half day magnesium sulfate infusion, and my nurse said it wasn’t safe to start the treatment until my breathing was stabilized. So they transported me down to ER where I was admitted for 4 hours while they gave me IV steroids and and additional breathing treatment.  Oh, and changed the antibiotic.  Which is working, thank god.  I have no particularly uplifting words today, I’m afraid.  This has been the most frightening infection I have had since I was diagnosed, and I’m still struggling to get some energy back. Man, those IV steroids are hard on your system. At least they only needed one dose, instead of 3 days of doses like last time.  I’ll post when I can.  Please send good thoughts and prayers.


It’s Been A Really Long Time……

Hi Guys,

It’s been almost two months since I’ve posted.  The time has been eventful, both good and bad, with both things accomplished, and a lot of mourning of my limitations.  I have to say that I am deeply touched by how many of you have checked in regularly looking for new posts.  Thank you. That has heartened me, and I need heartening today.

I got a cold, which started out very mild.  Then it felt like it had moved into an infection, but I had no evidence, so I couldn’t start antibiotics.  By the time the skyrocketing pain gave me evidence, the infection had taken hold.  The first antibiotic, which has worked for years, didn’t work, so we moved on to another one.  For most people that wouldn’t be a big deal.  But for us immune deficient folks, it’s a major deal.  The Augmentin hasn’t really worked effectively for the last three infections, which means that my body’s microorganisms have probably developed a resistance to it.  Which means that the list of antibiotics that do work has just grown shorter by one more.  Which is, shall we say, worrying.

By the time we changed to Azithromycin, I had both a sinus infection and a lung infection. The infections are improving, but I feel terrible, and am anxious to start feeling better.

And here’s the really difficult part:  this is my life.  I will be going along, doing what I’m supposed to do, taking care of myself, and for me, generally doing pretty well.  And then bam.  I get sick and the world seems to end.  I don’t get sick like a normal person. I get SICK.  And I hate that.  I hate that it reminds me that my life hangs by a far more fragile thread than most people’s. A  life in which something as simple as a mild cold can turn, seemingly in a heartbeat, into a complicated infection in which there are no guarantees that antibiotics will work.

Two days ago, one of my best friends said, “Hannah, none of us can really understand what it is like for you.  Not me, not even your husband.  We can empathize, but the only people who can truly get it is other immune deficient people.”

I started to cry and responded, “It’s so lonely!”

And her soft answer was, “I know.”

Love to you guys,



Hi Guys,

I am improving.  Off of pain medication except for an occasional dose in the late afternoon. I was able to drive myself to my first post-op appointment today and the surgeon’s assistant was pleased with how things looked!  Still not able to do a whole lot, but am able to do more than I could 2 days ago.  I am, however, still extremely tired, and don’t have much energy for thinking through the posts floating around in my head.  Hopefully I can think more coherently in a few days.  I’ll check in with you all soon.