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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Other emergency prep

“People with disabilities are often better at coping with
emergencies than others; living with MS every day
teaches us how to handle the unexpected.”
–The National MS Society
 
I am watching coverage of the latest hurricane.  Heartsick, I can only imagine what it feels like to lose pieces of your life to disaster. 
 
Sadly, MSers are better able to emotionally handle the unexpected. Our disease kinda makes us experts. But equally, the impact on our physical needs can be “compounded by factors such as reliance on electrical power…(and) accessible transportation…which can be compromised in emergency situations.”
 
Now I don’t live on the east coast, but I do live in earthquake country. And while I have never had to evacuate, these are some things I imagine would make bugging out less stressful.
 
My ideas
 
First, plan escape routes at your home and office. Anywhere, occasionally stop and ask yourself “Right now, if I had to get out, how would I?” You’ve heard it said, the first time you try out your escape plans shouldn’t be right as you need them.
 
Having a go-bag for any type of emergency means one less thing you have to think about in the clutch. Pack clothes for a 72-hour bug-out and keep by the front door or in the car.
 
Also include enough food and water to last you and your pets for at least 72 hours. Include a can opener and any utensils you might need. 
 
We MSers could also need extra meds  (see ideas for amassing extra meds here) and incontinence products. Maybe have a manual wheelchair, an extra cane, spare batteries for an assistive device or hearing aids. Keep extras on hand. A good rule of thumb is to never let any regularly used supply of anything run below 25% .
 
Also have an emergency kit that contains first aid supplies (including aspirin in case of a heart attack, and maybe even some water purification tablets), a solar or hand-crank radio, a no-batteries-needed flashlight, soap, toothpaste, hand sanitizer, diapers (child and/or adult), several rolls of toilet paper, a camping knife, a roll of duct tape, and several plastic garbage bags.
  
Have a contact outside the disaster zone to act as a personal relay hub.
 
Finally, try to scan and save as much of your important paperwork ahead of time. Or at least take pictures of your docs that you can put on a cloud server as backup.
 
Other things
 
Research pet evacuation here. Helpful things we can do ahead of time are to take pictures of our pets, and also to create written information on “feeding schedules, medical conditions and behavior issues along with the name and number of your veterinarian in case you have to board (them).”
  
If you are without power for an extended period, you may want a propane camping stove and something to cook in.  There are plenty of ideas online about cooking when camping. 
 
Lastly, when you are in it, remember to breathe. You can do this.
 
As the MS Society points out, you’re used to being in a certain environment and knowing how to manage there. A disaster can change that.   
 
Consult your healthcare provider if you experience anxiety, irritability, depression, isolation or guilt, or any other mental or physical changes after surviving an ordeal.
 
Related stuff
“…i also have a stockpile. when I first started five years ago,
the nurse told me to tell them I had three less pills then I actually did.
This is what started me having the backstock…”
–user feedback on Facebook

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MSers: Why vacation?

There are a lot of articles today reporting how helpful it is to take your work vacations. OK. But why should MSers? Vacations are exhausting, stressful, and drain resources and energy. The experience is difficult for even a healthy person.
 
I think it ultimately boils down to do we think we deserve it? Is it worth it to save money to do it? And why, when our health is so compromised and our meds are so expensive, should we keep doing it?  How is it contributing to our health?
 
Ways it Helps

 

  • Increases brain neuroplasticity.  The more you expose yourself to new and different things, the more you develop cognitive flexibility, the ability to “make deep connections between disparate forms…
  • Contributes to heart health. For both men and women, taking a vacation every two years compared to every six will lessen the risk of coronary heart disease or heart attacks. This suggests that living full-time in stress can hurt you.
  • Relieves stress. Certainly work can be stressful. But there is also stress in considering what our future might hold or how our disease will progress. If you step away from your routines, even for a day, you will change your perspective and may discover new coping mechanisms.
  • Improves family bonding. As these people are part of your support network, it is important to make shared memories. In future, these can be recalled and thus “promote positive ties.”
  • Makes you sexier.  Ha, just checking that you were still reading! But really, a recent study demonstrated that pictures of women with high levels of the stress hormone cortisol were rated as less attractive than women with low-levels.
Upshot
 
So a vacation is a necessity. The goal is to calm yourself and make memories. The benefits to us outweigh the risks.
 
I have never been what you might call an avid traveler. I have never even fully appreciated packing up and going away on holiday. Until I am there. So consider the source.
 
Some of the most re-energizing breaks I’ve taken have been long weekends or the occasional week. Come to find out that is the latest recommendation: shorter and more frequent travels throughout a year. Like a week long vacation, coupled with 7 Fridays off sprinkled throughout the year for 3-day weekends.
 
And as one recent study suggested, even planning for a respite can increase your happiness. So this schedule could prolong my positive moods!
 
Ideas
 
Traveling is hard.  Staying in someplace different once you’ve traveled there is less so.  I’ve often wondered if RVing would be a solution for me. It seems like it would ease the stress of staying in different surroundings.
 
Cruises seem like another solution.  Again focusing on the staying in one lodging while letting the boat do the travelling. To me the issue here is money, but then again why would the expense for RVing, say, or camping (or glamping) be less prohibitive? (At the link below to MS Cruisers you can find info on making your cruise payment in installments!)
 
If money is a concern (and when isn’t it?) you should try a “stay-cation” where you don’t venture further than your state, town or city, or even neighborhood.  You can even borrow accessible-travel guides from your local MS org for free (see for example the Resource Lending Library).
 
This reminds me of an even smaller commitment: “the Artist’s Date” with yourself as explained in the book The Artist’s Way. A weekly appointment for doing something fun TO YOU. Like going to a store that you’ve always wanted to explore, a local museum you’ve always wanted to check out, an unusual movie that you would go to see ‘if only’.
 
It turns out that taking regular breaks is mandatory for anybody’s healthy and happy life. Whether you have MS or not!
 
Other stuff
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If you need short-term nursing

I urge you to check out the medical facilities and services around you that you can go use for a short stay when experiencing an exacerbation.

If and when you have an exacerbation (acute, short-term) and need additional help, you may not want to place the extra burden on your loved ones.  Hiring a visiting nurse or relocating to a dedicated facility for a short stay may take some weight off family caregivers.
 
NOTE: I have never had an exacerbation so severe I needed to go to the hospital (and I've been dealing with MS a looooong time). I've never been in this position, but I do know others who have.  So take this info as suggestions, brainstorming if you will.
 
Visiting Nurses
 
Recently a friend had hernia surgery. He and his doctor decided that, rather than staying at the hospital or going to a rehab center, he would go home and have a visiting nurse come every few days to check his vitals and change the dressing on his wound. In addition, a visiting physical therapist came once-a-week.
 
Something like this might serve us when in the throes of an exacerbation.  You could ask your doctor or the hospital to order it for you, or you may find a caregiver agency.  Again, the time to compare is before you need it. 
 
Also note: Many home care agencies offer hourly nursing services up to 24/7 live-in home health aide support as needed. 
 
Assisted Living
 
An assisted living residence is like an apartment with staff that can visit to provide you personal care support services such as meals, medication management, bathing, dressing and transportation, using the phone, and even shopping. But it also has it's own cooking facilities and it's own bathroom and some even allow pets.
 
It can be a long-term care option, so you may not be able to go at a moment's notice, like for an exacerbation, but more and more of these facilities do offer short-term stays as well.  It's worth a call.
 
An assisted living community can provide both privacy and companionship.
 
Nursing Homes
 
Unlike assisted living facilities, nursing homes provide more intensive, 24/7 supervised medical care in a fully staffed and monitored facility.
 
Short-term stay is already generally expected for those who have been hospitalized due to injury or illness and require supervised care while recovering.  Call and ask if they allow you to come in on your own.
 
Plan Ahead
 
I urge you to check out the medical facilities and services around you that you can go use for a short stay when experiencing an exacerbation. Before you need them, just in case. Discuss with your family the services you’ll need and might want. 
 
It can take time to research and find ones you like, so doing it now, in a low-stress way, can make the decision to go so much easier. You will know what to expect.
 
Editor's note: Details have been changed to protect user privacy.
 
Related stuff
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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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How could I get out?

When I read the news report about the recently rescued victims of the earthquake/tsunami, I realized that there was more that I should consider about our disaster planning.

OH and I have talked about disaster planning in the past, often when some major disaster happens. Like the San Bruno gas explosion and the earthquake and tsunami in Japan.

We both lived through the Calif. Bay Area earthquake in 1989. I was serving beer at a pub in the East Bay, getting ready for the World Series between the two Bay Area teams.  So we cheered at the first rumbles thinking it was a sign.  Then the TV screens went black and when they came back up we saw pictures of the bridge and freeway collapses.

OH was doing garage door service calls in S.F. at the time, had his last one of the day canceled by the dispatcher, and made it home to his wife and the two babies she was caring for just as the quake hit.  They lived on a top floor of an apartment building on the Peninsula at the time and were just able to save their dog and make a harrowing descent by crumbling staircase during the disaster but when it was all over, had lost everything.

In case of emergency, break glass.  The phrase has become shorthand for us, whether talking about creating wills or just visiting assisted-living facilities.  It conveys the idea of having a plan for any eventuality.  Be prepared as best we can.

We have agreed to set up earthquake kits and store emergency supplies. I have resolved to keep a pair of shoes under my bed (and to try to always wear slippers, although I really am more comfortable in bare feet).  [The importance of this recently became apparent when I broke a glass and couldn't move without stepping on the shards.]

So when I read the news report about the recently rescued victims of the earthquake/tsunami, I realized that there was more that I should consider about our disaster planning: “The 80-year-old woman's weak legs kept her from walking…out of the wreckage…”

Hmmm.  Yikes.  Weak legs.

I started searching for emergency preparedness for those with limited mobility.  I was oddly comforted by discovering the existence of emergency evacuation chairs, that there are even brand competitors!  OK, so I can get downstairs after an earthquake. [I truly believe that our stairs will weather anything; OH overbuilds for my safety!]

The other thing I'm thinking here is to focus on the strength of my upper arms. If I need to, I will be able to scoot around on my butt.

And the MS society suggests that "If you cannot move from your bed without help, store a fire-resistant blanket in your bedside cabinet, along with a washcloth or small towel that you can wet with your drinking water and place over your face as a shield against smoke."

I will keep looking but now I feel like it would be manageable.  Let's hope our plans are never tested in the real world.

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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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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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