43 hours without electricity

Or lessons I learned from the outage.
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
There were a few emails the day before, warning us that they would need to shut off electricity in advance of the powerful wind as a precaution. Given the recent, disastrous fires, it is easy to agree with the reasoning.
 
But really? Is this the best PG&E HQ could come up with in the two years since Paradise? I think this is a distressing lack of imagination! Even my cousin in Washington said “Somehow many other countries have figured out how to run the power lines underground. Perhaps they could draw us a little picture.”
 
OK, I do believe in climate change, both natural and man-made, but I also
living in Hayward and suffered through the Oakland Hills firestorm in 1991, so this is hardly a recent problem. If burying the lines was so expensive back then, we could’ve at least started saving then. Maybe had a bake sale? Just sayin’
 
The outage
 
We lost power on Saturday night at 8 PM and it stayed off until Monday afternoon at 3 PM. 43 hours. Not anything like what other people have gone through, but disturbing nonetheless.
 
With advance notice I was able to put fresh batteries in my flashlight and charge up my iPad and cell phone. In present day society, being able to text and listen to podcasts while the power is out is not a hardship. I was able to ration my battery accordingly.
 
Like camping
 
I am heat sensitive like many MSers but I do not use an Air conditioner at this time. Luckily if  I needed an air conditioner I could be driven to a local cooling station, for example. Usually in a community in crisis there are places that are running on a generator.
 
Another friend asked do you have a plan if you have to get out? Answer yes. In fact my husband keeps the gas tank in the truck above the half full level at all times, and has it already stocked with emergency supplies. So at a moments notice (well for me that’s more like 10 minutes!) we just have to get ourselves out the door and into the truck.
 
Debrief
 
Ultimately this could have been way worse. Clearly my exit plans rely on rely on friends and family to help me out of the house, or to drive me somewhere. I‘ll continue to mull exit options for the future, but I guess you never know what you don’t know until after the event.
 
So for the next power outage should get: hand crank radio, solar powered or battery-operated cell phone/iPad charger, maybe some cans of cold coffee and a battery operated fan?
 
Which makes me think of preparing for camping or a zombie apocalypse (digression: would zombies be a danger to me since I notice that mosquitos no longer will bite me now that I’m taking a DMT, probably my blood tastes bad to them, although that is anecdotal so could be applicable just to me…)
 
What I’ve learned this week
  • Hoarding is twice as common among people with MS versus the general population
  • Most of us have inherited some core limiting beliefs about money, like ‘Money doesn’t grow on trees’ or ‘Waste not, want not’ so changing your underlying programming is critically important in manifesting a different reality. Cairns, J. A. (2015). The abundance code
  • 30 days is a good length of time for developing a new habit. Scott, S. J. (2015). Exercise every day: 32 tactics for building the exercise habit (even if you hate working out).

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MSer in a heat wave

Well, “heat wave” is a bit of a misnomer since the majority of MSers are heat sensitive, or even downright heat intolerant, so really any kind of heat can be the impetus for our own heat waves. And raised here in the SF Bay Area, I tend to be a bit Goldilocks anyway, preferring things to be not-too-hot, not-too-cold, but just right.
 
At the end of August, when we get a sudden spike of hot weather like we sometime do, we often refer to it as an Indian Summer. (I have come to learn that there is an actual definition of this in the Farmer’s Almanac, and we are not using it properly!).
 
Many MSers experience a temporary worsening of symptoms when the weather is very hot, or really anytime their core body temperature rises even one-quarter of a degree. In fact, an elevated temperature even impairs the ability of healthy nerves to conduct electrical impulses.
 
It can be especially hard for some of us because we may not sweat properly!  (Scientists call the study of this “thermoregulatory dysfunction in MS” or “temperature dysregulation“. )
 
In any case, you all know the basics: drink lots of water and stay hydrated, seek air conditioning, wear loose clothing, don’t run appliances like the dish washer or the washing machine at high peak times.
 
Here are more tips:
 
  • Drink water regularly, even before you get thirsty. Maybe try to drink an 8oz. glass of plain water each hour.  (And if you find you are staying away from liquids because you have bladder problems, be sure to mention that to your doctor so the two of you can come up with a solution.)

  • Eat cold, small meals that don’t need to be cooked. Consider using the microwave, the toaster oven or grill outside if you need to heat food.

  • Snack on frozen grapes or blueberries; stock-up on popsicles.  (When you have the energy, you can even make your own popsicles, using papercups and fortifying them with fresh fruit and herbs like ginger. )

  • Keep your curtains closed and unplug all unneeded electronics during the day to keep house cooler.  Consider having a cold room set up in a cooler part of the house, like a basement.

  • Place trays of ice in front of, or tie paper strands to, a stationary fan. Carry small hand held fan with you and use often. (You can also go to a community cooling center. Check with your local utility.)

  • Wear lighter colors, breathable shoes, a cooling vest if needed.  Wear wet swimsuit outside when doing yard work or gardening. As soon as suit dries, it is time to come inside. (Make sure to wear sunscreen for your skin when gardening and any other time you’re outside)

  • Take siestas during the hottest part of day. Then take a late night stroll and enjoy the nights coolness.

  • Make sure your car’s air conditioning is working. Tint your car windows with tint product (get a tint with heat reduction as its main goal). Consider insulating car floor. 

  • Freeze sheets before bed.  Try buckwheat pillow. Use thinnest sheets on bed as possible. Consider sleeping naked.

  • If you don’t have the energy to do any of this right now, get a cold drink and a washcloth to wet, then fill your bathtub or kiddie pool or even just a bucket with cold water for your feet, and soak. 
Finally, some people with MS notice that symptoms become worse in cold weather too. It is generally recommended that people with MS who are sensitive to temperature try to avoid extremes of either hot or cold.
 
Related things
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Where I live

When I was diagnosed, I was counseled to go home and make plans to be in a wheelchair. Wow.

image from lorna.typepad.comWhen I was diagnosed, I lived in a very warm area in a second floor apartment. I was counseled to go home and make plans to be in a wheelchair. Wow.

My first neurologist told me the prevailing thinking at the time which was that we could determine how harsh the disease was going to progress by watching the first five years after diagnosis.

So, after the first year I sold my car, bought a motorcycle and learned to ride, trying to do things on my bucket list

At First

Time went on, and nothing about my health seemed to be progressing. Medications had started to become approved for MS, but they were only proven to be disease-modifying therapies, or DMTs, still no cure, and all required me to give myself shots. 

This seemed to be a high cost for little return.  And since nothing seemed to be happening to me health-wise, I took the risk that since I'd made it past the five years, I was out of the woods.

Although I was cautiously optimistic, I did move to an apartment on the first floor.  Sometimes when it was unbearably warm, I'd come home after work and fill up the bathtub with cold water then spend the evening submerged in it. 

And as the approved meds became more plentiful, I finally got a prescription and started to inject myself. Ouch!

My House

When the market took a momentary dip in 2001, I found and bought a small, one-story fixer upper in a cooler area near the ocean. I was so excited to have bought my own first house and had dreams of fixing it up myself and staying through my retirement.

But the house was on a small lot, so when we needed more room the only place to go was up. I never gave my mobility a thought. 

Unfortunately, at about the same time I began to have mobility problems.  It seems that the prevailing thinking now is that you should start any of the DMTs as soon as possible after diagnosis.

Currently

Now I take a pill DMT by mouth once a day, telecommute to the office and spend most of my time on the second floor working.

I can still take the stairs standing up and holding on to the banisters. But on really exhausting days I need to scoot up and down on my butt. I joke that it's part of my exercise routine!

The plan now is to makeover the downstairs bedroom into an office. And we constantly debate whether or not to get a stair lift. But as the stairs are the first thing you see when you come in the front door I have been very reluctant (embarrassed?) to get one.

So pride more than anything keeps me scooting.

When FDR was in a wheelchair in the White House he did regular fire drills where he scooted down the stairs to get out.

I say if it was good enough for him in the WH, it's good enough for me!

Related resources

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My world is narrowing

I once read a book titled Wide My World, Narrow My Bed (about consciously choosing to live a happy and adventurous single life). I love that title!  It has stayed with me.  Lately I’ve realized that my situation has become the opposite: wide my bed–we sleep with dog and cats on a king-sized mattress–and narrow my world.   Because ihn recent years, I leave my home less and less.  My world is shrinking.

I’m not bringing this up to encourage pity or sympathy.  I’m trying to examine and explain it logically and with detachment. For example, I now work from home full-time, teleconferencing into the office for meetings and collaborating with co-workers on projects via e-mail and instant messaging (IM).

I am still an active member of the local chapter of my professional group, the Special Libraries Association (SLA), although I rarely attend meetings in person anymore.  I do serve as owner of our e-mail discussion list and I recently completed a two-year stint formatting, posting and billing for the local job listings on our web page.  For ths I even got an award.  Monthly we have our board meetings, with everyone calling in to teleconference.  

So for now I’m still able to volunteer my expertise and to work full-time.  

I bought a house near the coast, thinking that cooler weather would be better for me if my disease advanced. That is, in a worst-case scenario (which I now consider just a worse case scenario. You know, hope for the best but plan for worse).  [I can’t believe I’m at “worst-case” levels–you can always find someone worse-off than you.]

I use the scooter to get around, which helps with my waning mobility, but I’m also starting to be very sensitive to even minor increases of temperature and to experience more frequent bouts of extreme fatigue. From time to time my friends and family have pointed out that I’ve always been a homebody, that I’d have a harder time with this decline if I was an avid mountain climber or marathon runner. I suspect this would be true.  

But I’m thinking now about how I can take advantage of being less mobile, turn it into a positive. Like make better use of the telephone and my organizing skills.

One thought is to become a birthday monitor–keeping track of everyone’s birthday, age, anniversary; sending cards and keeping everyone else informed.   Another is to set up a telephone calling schedule to make sure I stay in regular contact with friends.  Also, from time to time someone will ask me if they can give my phone number to a loved one who is newly diagnosed.  I always say yes, but I’m remembering how surreal it is to be newly diagnosed and thinking I can be more proactive and call them.

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“I’m melting! melting!”

The first time I experienced M.S. fatigue, I was living on the Peninsula in the S.F. Bay Area.  It was exhaustion like I'd never known.  I remember trying to fold my clean laundry in a laundromat and having to stop and rest after one or two pieces at a time.  

My arms felt like lead, my legs felt like they were shuffling through quicksand and my brain was so, so foggy.  And sleeping didn't help although getting out of bed each morning was a battle.  The exacerbation lasted a few weeks.

As with all my symptoms, it seems that once I've had it for the first time, the subsequent times I get it don't seem as severe.  In reality, I suspect that they are as severe but that I become desensitized to them.  Or maybe it's just never as scary ever after.

In any case, I think I am in the throes of an exacerbation, and the current heat wave isn't helping.

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Overcast is good

It’s been almost a week since my last post, so I feel like I should write something. The truth is that I’ve been feeling a little under the weather. Literally. Because even as California has had record-breaking heat and some out of control brush fires, where I live has been overcast and socked in by heavy fog, which is good for me physically but not emotionally.
 
As with a lot of MSers, heat quickly “melts” me: it strips me of my strength, my energy, my vision, my balance. It makes me dizzy and nauseous. And I even suffer when I’m on the second floor of my house (heat rises) cleaning my bathroom or rearranging my closet. I can only work about ten minutes and then have to sit or lay down about twenty minutes to let my “core” temperature cool down. Not very efficient.
 
So overcast is good, but add it to a bit of a lingering headache and some mild tummy upset and I just want to curl up in a blanket with a cat and a mystery novel and a cup of hot tea. Ah, work: as my friend D. says, it’s so inconvenient!
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