Wednesday, February 22, 2017

Tips From This Spoonie: Stress

This shaky photo of boats on the water reminds me of brain synapses straining to connect during stress

Beyond a doubt, the most severe threat to this spoonie's health, both long- and short-term, is stress.  While I work hard to stay healthy and have been fortunate, I could be at the top of my game, only to have it all undone in one stressful moment.  A shock to the system will typically send a literal electric shock sensation through my body and I can actually feel the damage in my brain.  A bad shock will send me to bed for a day or two, as cognition becomes foggy and exhaustion prevails.  It's as if a life force has been sapped.  Unfortunately, life is stressful by nature and avoiding stress altogether is unrealistic. While spoonies can't avoid all stress, there are things we can do to mitigate and minimize the smaller stressful moments we may otherwise endure.  Here are a few things I do to take care of myself.

1.  I only make right turns in traffic.  People may think I'm being ridiculous, but timing a left turn across two directions of traffic is extremely stressful for me.  I think the reason for this is that, with my worsening vision, I no longer have confidence in my depth perception.  Better safe than sorry, and better calm than compromised.  Incidentally, while I may be going "around my elbow to get to my thumb", I understand that navigation software has actually been developed for delivery trucks that prioritizes right turns in routing.  In many cases, especially in heavy traffic, the right-turn route is faster.  Also, the delivery companies get a break on insurance with this navigation system since there are fewer accidents with mostly right turns in the route.

2.  I "practice" an unfamiliar route the day before.  Knowing where I'm going is very important for eliminating stress.  If I'm not on a schedule, and can choose a time to find the location when there is less traffic, it'll be easier for me the next day.  The necessity of changing lanes in thick traffic at the last minute is terribly stressful.  I memorize exactly which lane I'll need and get into it well in advance.

3.  I avoid driving after dark.  It's just too hard to see.

4.  I aim to leave 15 minutes before I have to.  I'm otherwise notoriously late, since there's always something unforeseen to tend as I'm walking out the door. Even with this 15 minute cushion, I still usually get there only 5 minutes early.

5.  I try to limit errands to two locations per day.  More than that, and I run out of steam.

6.  I try to take notes and keep records on paper -- filed.  This sounds old school, but online banking is as cyber-savvy as I get.  I've found my bank's website to be useful, easily searchable and dependable, but I've had trouble managing separate accounts which only online-bill.  Since each account has a different system, it's hard for me to keep track.  My memory is unreliable, so I need a paper trail for most things.

7. I limit brain-intensive tasks to the morning, when I'm most likely to succeed.  There's no point in persisting after my head has run out of steam.  I'll just suffer, then have to check back later and redo it anyway.

8.  I go to bed when I want to.  I used to feel guilty, but my family gets it now.

9.  I try to be firm with boundaries.  Full disclosure, I'm terrible at this, but I'm working on getting better.  As an empathetic mom and wife, my default mode is to put everyone else's needs first, especially if there's a crisis of any kind.  Discussing boundaries with loved ones when it's not the "heat of the moment" may be a good strategy.  The best thing I can do sometimes is to remove myself from the equation.  This one's a work in progress.

10. Recharging is important.  Taking some time each day to be alone is great for clearing an addled mind, and creativity of any kind is food for the soul.  Nature is wonderful for maintaining perspective.

11. Meditation is excellent for minimizing stress, but it's difficult to do if we're already in the throes of it.  Maintaining a regular practice really does make it easier and more effective.  For the times when quieting the mind is a lost cause, swaroopa yoga is wonderful.  This type of yoga is really a guided meditation, tapping into mind, body and spirit.  I can't say enough good things about it.  There's no more effective reboot.

12. Remember humor.  When we face a stressful situation, it's sometimes hard to think of anything else.  The evolutionary cause of this mindset is likely to find a solution i.e. finding a way to evade the jaws of a saber-toothed tiger.  But our modern stress is often about things that cannot be readily solved.  When all we can do is wait, it's best to step out of a circular thinking pattern.  A belly laugh is amazingly good at snapping us out of a stressful moment.  "Drunk History" is a show that delivers to spectacular effect and is a great way to spend half an hour.  Youtube videos or satire in the form of literature, shows or movies can also do the trick.  The point is to distract ourselves until the worst of the moment has passed.

As I find more stress-busting suggestions for spoonies, I'll share them going forward.

Sunday, February 19, 2017

Tips From This Spoonie: Medications

If you too are a spoonie, you probably have one of these.  In this pill organizer is a collection of prescriptions and supplements that have been prescribed by my Neurologist and Functional Medicine doctor.  I was diagnosed with MS over 21 years ago, and am mostly doing well.  Besides the medications, I follow a healthy diet and do my best to stay fit and reduce stress, which is the most devastating thing for disease activity.

The pill organizer is great for quickly sorting pills when I'm at home, but when I travel, the compartments are prone to pop open, so I use ziplock baggies instead.  With a sharpie, I label the AM piles.  I used to do AM and PM but my vision has gotten much worse so if I only write on one pile of baggies, it's easier for me to tell them apart.

Insurance has recently stopped paying for one of the injectables I've been taking for 17 years now, copaxone, because a generic has become available:  glatopa.  I did the research and I find that the ingredients are the same, and it's covered, so I switched.

I don't like the accessories that came with the glatopa -- specifically the "glatopaject"  which is a brutal, bruising version of the autoject I used to use with copaxone.  It's like being punched in the gut with a fist holding a needle.  The glass glatopa syringe appeared to be the same circumference as the copaxone, so I experimented and popped it into my old tried and true autoject.  It worked like a charm, so I trashed the glatopaject torture device.  This is a photo of the autoject I've been using for years.  It is a great little gadget for taking the psychology out of daily injections.  You just load the syringe and push a button.  It makes needles as palatable as they can be, and I'm grateful for it.

My other injectable, B12, is compounded and I use a 1-inch needle to administer it intramuscularly, and there's no autoject for that, but it's great medicine and only once a week, so I do it.
This stiff-walled case, made by copaxone, makes more sense than the soft little duffel glatopa sent me, which is being used as an excellent lunchbox now.  The syringes are prefilled and made of glass.  If there is a way to avoid catastrophe, why not?
About 10 syringes will fit in the pocket, along with the autoject and a nifty little gadget that's my latest favorite thing for travelling with needles:
The needle nipper!  This tiny little thing makes safely disposing of sharps easy.  After using the syringe, you insert the needle into this little hole, and then squeeze the sides together.  The needle is cut off the syringe and remains inside the gadget.  The needleless syringe can then go in any trash can.  In days of yore, a plastic flat baby wipes container with a rubber band to keep it closed was my best bet to travel with used sharps safely.  I needed something that large to bring the whole syringes back home to my sharps container.  This little gadget is a game changer.

Incidentally, over the 18-odd years I've been travelling with sharp objects, I've only been stopped once going through security.  I was leaving Nicaragua for the U.S. with a bunch of used needles.  I offered to hand them over, but explained that I was planning on safely disposing of them at home.  They let me proceed with my sharps.  I've travelled often, and it's a bit alarming that my filled syringes and paraphernalia are clearly visible by x-ray, but I don't get so much as a second look.  Also, it's fine for me to fly with 18-inch metal knitting needles.  You'd better not bring your nail clippers, though!

But I digresse -- if any other spoonies out there have tips or ideas that make life easier, I'd love to hear!

Thursday, February 16, 2017

Tips From This Spoonie: Food Prep

As spoonies, we're all different, but we share some things in common.  One is that our routines with medication and food can cost us time, energy and funds.  Necessity being the mother of invention, most of us have found ways to optimize the process.

Nutrition plays an enormous role in a spoonie's well being.  Working with a Functional Medicine doctor or a nutritionist can be helpful.  Fresh, organic vegetables and fruits benefit anyone, but especially us spoonies.  I try to buy mostly organic, but because of financial constraints, sometimes keep the "Dirty Dozen" list in mind when shopping for veggies.  This list rates vegetables on how unhealthy they are for us if not organic.  Those rated as "dirtiest" have pesticide absorption more than skin-deep, so cannot be adequately washed.  The link here, from EWG, actually lists the 48 dirtiest veggies.  I definitely don't want to add poisons to my system, so try to opt for organics for these.

Many spoonies don't have much energy to prepare healthy food.  Here's what I do to cut down on the "active" part of fresh veggie prep.  I use a series of large bowls.  In the sink, I fill a bowl with dirty veggies, water and a splash of white vinegar.  I let it soak for about 5 minutes while I tend to other tasks.  In the other sink I fill a second bowl with plain water.  I use this natural bristle brush to quickly wipe off the vegetables, one at a time, and any visible dirt will come right off.  Each vegetable then goes into the fresh water bath. This only takes a handful of seconds.  Finally, I pull the whole pile of veggies from the water bath and put them in a dry bowl where they are ready to chop.  The reason I pull them out of the water rather than draining them in a colander is that there is often still grit at the bottom of the bowl.  I work with gravity and keep the grit on the bottom.  Though I'm only actively scrubbing for seconds, the initial vinegar soak is very effective, and I find the veggies are much cleaner than just washing by hand under running water.

I keep this veggie brush in a drawer because more than one well-meaning family member has used former veg-brushes to scrub dirty dishes with detergent.  While I am sooooo grateful for any help in the kitchen, I could never think of those brushes again as clean with the chemicals from the soap and possibly dairy residue (I'm dairy-free).  It may not really matter, but it's my quirk, so I hide the brush.

Serendipitously, I discovered the little brush fits perfectly on the faucet handle for drying after I've used it.  While it's drying, I do rudely tell everyone not to touch it.  I don't ask for much, so they bear with me!  Then I hide it again.

As ideas come, I'll continue this "Tips From This Spoonie" series. #spoonie