Wednesday, October 31, 2012


I learned an important lesson from drinking coffee today.

I stopped drinking coffee many many years ago even though I love the stuff.  I consider it nectar of the Gods.  However, it did weird stuff to my sleep.  Not the usual keep me up at night stuff but some kind of weird sleep disruption.  I slept but by the end of the week I was exhausted.  When I switched over to tea, even though it has caffeine  the problem completely went away so it must be some other chemical compound in it that was giving me problems.

Anyway, since discovering that my neuro symptoms improve for many many hours after drinking the stuff I have started my coffee habit again.  I was expecting the old fatigue problems to crop up but I'm on two different sleep meds now so I get a really good nights sleep no matter what I do to abuse my body during the day.  Of course I should be buying the Bullet Proof Coffee offered by the Bullet Proof Executive since it is organic, fair trade and mold free but silly me I'm going out to coffee shops with my son instead.  Way more fun that being politically correct.

Since starting up my coffee habit again I've noticed that it suppresses my apatite quite a bit.  My kid confirms this and he uses it for his breakfast meal so he doesn't have to deal with food in the morning.  Not healthy but he is old enough to know better and he does know better but does it anyway.  But I digress...  

So today we went out to Heavenly Donuts for our afternoon "beans" as my kid calls it and had a medium with lots of cream and a cheese danish.  I love cheese danish and this is the first one I've had for over three years.  I used to eat them once in a while at work and haven't had any since being sick with CFS.  And dang if that didn't taste awesome!  But I digress again...   So I had a medium coffee and danish around 4pm.  I had a cheese omelette at 1pm for lunch.  At 6pm I felt nauseous.  That blood sugar crashing nauseous.  That I have to eat real food right now or I'm gonna barf nauseous.  So why the sudden blood sugar crash?  I had eaten enough food spaced at reasonable amount of time for that not to occur.  So what gives?

I thought about it for a bit and realized that this has happened to me several times after having coffee.  I haven't quite figured out if it is just the coffee causing me to not eat enough food so I get nauseous instead of hungry or if it is the coffee sugar bomb (danish/donut/muffin) combo that is causing the problem.  The donut shop gives away free donuts with a cup of coffee after 2pm so donuts have reentered my life as well.  A little bit more observation should help now that I know what to look for.  Upon further consideration I think that I had better apatite signaling when I was a teatotaler than a coffee drinker. I haven't had the blood sugar crash upset tummy thing for many years unless it was brought on by meds.

So now the problem is how to integrate coffee back into my life without causing blood sugar problems.  Eating yogurt with my coffee instead of a sugar bomb would be a good start.

Tuesday, October 30, 2012

Goodbye Sandy!

I, my family, my cat, my house and my cars survived Sandy's onslaught.  I count myself as very very lucky.  We only had to deal with a one hour power outage.  No biggie.  I've also heard from my friends and my internet CFS/ME friends that were in the path of the storm and everyone is alive and well although a few are still without power.  Whew!

One thing that did surprise me with Sandy's arrival was the huge exacerbation of my symptoms.  Very suddenly as the barometric pressure dropped I felt like I was wearing a lead suit.  I didn't have the strength to hold myself up anymore.  I was stuck in bed semi-conscious for most of the storm.  By the time 3am rolled around (when I'm usually wide awake especially if I've spent part of the day in bed) I was dog tired again and had to go to bed early where I slept for another ten hours.  WTH!?!

Today I'm a bit better but not as mobile or full of pep as usual and have spent most of the day stuck on the couch.  An improvement over yesterday but still not great.  Today I'm still in Sandy's tail and have been watching the weather vacillate between clear skies and torrential downpours and outright nasty thunderstorms.  My body aches all over.

It will soon be over.  I have one more day of Sandy to go.  Then clear skies and sunshine.  I'm looking forward to sunbathing on Friday and hoping that will help.

I must say I wasn't prepared for my body being slammed so hard by the storm.  I can't say it was the prep work since I couldn't do any.  I didn't even do my usual grocery runs prior to the storm since we had so much left over from the prior weekend.  I didn't even need milk.  I went into the storm well rested but noticed that I lacked energy several days before she hit.  Dr. Klimas has studied this phenomena in CFS/ME patients and it is very real.  However, they haven't really figured out why.  I'm not sure it happens to all of us either since one of my CFS buddies was in the direct path of the storm and she seems to be doing okay.

This illness is just one huge mystery.   I am just happy that everyone and everything is okay.  It could have gone so much worse.

Monday, October 29, 2012

Hello Sandy!

Prepping for a potential disaster is a lot of work when you are well.  Having CFS makes it damn near impossible.  I am totally dependent upon my husband and son to do all the work.  Hubs put all the yard stuff away.  Luckily we already had tons of food in the house and gas for the grill if the power goes out.  Although BBQing during a hurricane doesn't sound like too much fun.  The one thing that fell through the cracks was the refill on my sleep meds.  Yup, I ran out.  We're crossing our fingers that my regular pharmacy is open tomorrow morning otherwise it is going to be a rough couple of nights.  Luckily it isn't anything more serious.

I'm not in the direct path.  Fortunately we are much further north.  Our biggest problem is going to be high winds.  We aren't even getting that much rain, only 2" predicted.  I am also fortunate to live in a town with a municipal light department which means we aren't dependent on National Grid or NStar for service.  Woohoo!!  If we do loose power it will only be for a few hours rather than days.

Hubs has the day off work and kid's school is canceled so we get to drive each other nuts tomorrow. Particularly if the power goes out and we will be forced to entertain each other.  Maybe I'll just sleep all day.

Wednesday, October 24, 2012


Warning: Profanity laced rant enclosed.

Hubs:  Our upload speed is 1/6 of our download speed for the internet.
Me: Yup.  It is very typical for the provider to have a much slower upload speed than download speed.
Hubs: But it is more than one half.  Could that be why the delay is occurring during my online gaming?
Me: Yes.  It certainly is.  You need to get the original contract and see what they promised you.  People have sued them in the past for breach of contract for not providing the services as stated.
Hubs (with enthusiasm): I'll get right on that.  I'm calling them tomorrow and get this fixed.
Me (to his receding back): You might want to look at the Medicare info instead.  It is a bit more important than whether you can shoot at zombies before getting killed.
(long delay: I go back to internet surfing)
Hubs (returns to room): I've got an idea, why don't you call them?
Me: I can't.
Hubs: Why not?  Just get a list of questions together and have them explain it to you.
Me: I can't.  It doesn't work that way.  The booklets explain everything I just can't read them or absorb the information.
Hubs: So hire someone to!  Get a lawyer to do it for you.
Me: It isn't a lawyer problem.  It is our health care.  We need to figure out what plans that we need and I can't do that.
Hubs (really agitated): I don't want to.  I already do the laundry, the garbage, the dishes...
Me (cutting him off): I know you do and I appreciate that but I just can't do this.  I can't read it.  I can't understand the information.  It is too much and too complicated.
Hubs (really pissed off): I don't want to do it.  (storms off)

So now what?  My insurance policy covers my entire family.  I'm getting pushed onto Medicare by the long term disability company.  This isn't supposed to happen until Dec1st but the last letter I got from the gov says it starts Nov1st.  I have no idea if my family will have no coverage in a week and a half.  I told hubs he needed to take care of this when the booklets started arriving in the mail months ago.  I told him I couldn't do this.  That I can't understand it.  He has ignored it.

What am I supposed to do when someone refuses to help me.  I mean flat out refuses and he is supposed to be my go to person.  My fucking SPOUSE who is supposed to be my partner and helper is refusing to help with something that is critical to not just me but the whole family!!  What do I say to people?  Hi, you barely know me but can you help me figure out my Medicare because my husband is refusing to have anything to do with this?  Yes, I know it is vital to my continued health care, access to doctors and prescription medications.  Yes, I know my child and husband will be affected by the changes.  No, he is refusing to help and I can't read or make sense of this.

So, he cares more about the fucking internet speed for his online gaming than health insurance for his family.  How does that make me feel?  A burden.  Useless.  Unloved.  Unimportant.    I am SO VERY ANGRY right now.  I cried a lot but it didn't help at all.  I'm really ANGRY.  FURIOUS.  Rip someone's head off angry.

I'm going to have to ask for help from my teenage son.  He shouldn't be doing this.  I hate asking but I can't think of anyone I can ask for help from.  Who is supposed to step in when a spouse won't help with something as fundamental as health care insurance?  My brother?  My sister?  They have crap of their own to take care of.  What is hubs doing?  Shooting zombies!!  What the FUCK is wrong with this picture!?!

Monday, October 22, 2012

Cooke's Skate Shop

Most days I'm okay and even happy even though I have this unrelenting illness.  I get up, do what I can to help out, rest a lot, cook a simple meal, visit doctors and sleep.  I kiss my husband and listen to his stories.  I sit in the yard and watch the clouds and the bugs.  That is about the extent of my days.

Every once in a while something sneaks up on me and upsets my domestic bliss.  This time it was a receipt.  In preparation for my upcoming disability claim review I'm already sorting papers.  I'm giving myself several months because I can only work on it sporadically and only for short bursts of time.  Two days ago I was sorting through old receipts looking for slips from the pharmacy for all the meds I take.  Since I haven't sorted receipts since before I got sick there were several years worth to go through.  Most of them were from the supermarket (I save and then destroy them since I use a credit card to pay: call me paranoid but both hubs and I have had our cards cloned).  I was almost done.  I was nearing the bottom of the shoe box when I found it.  A receipt from Cooke's Skate Shop for some minor work I had done to repair my figure skates a couple of months before I got sick.  Then it hit me.  That overwhelming grief.  The deluge of tears.  That yearning to be normal again   The desire for my old life.  The hatred of my illness and all the things it has robbed me of.  I cried.  I wept.  I wailed.  My cat looked at me funny.  As fast as it had snuck up on me, it was gone.  My tears dried up and I went back to sorting receipts.  Within the hour and one last wistful glance I ran the receipt through the shredder.

For some reason figure skating does that to me like nothing else can.  The last major moment of grief and tears occurred when I found out that the 2014 Adult National Figure Skating Competition is going to be held in my home state.  The big goal I had when I started figure skating again was competing at adult nationals and here it was coming to my backyard and I am stuck in the house with CFS.  Even if by some miracle of God I was instantly cured I probably wouldn't be able to compete since it had taken me two years to even get close to qualifying and now I have the muscle tone of a limp noodle and would have to start from scratch.  Again, I cried.  I wailed.  I soaked hubs' shirt with tears.  Then I got over it and carried on.

It has taken two years but I can finally watch figure skating on television again, well actually the internet since they have crappy TV coverage.  For the first year I couldn't watch it at all.  Then, last year, only if I was in the right mood.  Now I can finally enjoy watching it.  I miss it terribly.  I've had dreams/nightmares about being on the ice.  Most of them had me trying to skate in tiny spaces or jumping over obstacles   There were always barriers in my way of skating freely and fast.  I miss it.  I miss it terribly.  And if I let myself, I would pine for it.  It is something I have to ignore for now.  Stuff it down and hope that someday I'll be able to skate again.  Even if it is just figures.  Just to be able to walk into the rink to visit my coach and friends would make me happy.

Grief is part of this illness.  We never know if we will be among the chosen few who will recover.  I hope I am.  But in the meantime I'll have a few crying jags when skating sneaks back into my life and blindsides me.

Wednesday, October 17, 2012

Return to "Normal"

I'm very happy to report I'm returning back to baseline.  I made sure I had no appointments after vacation so I could rest.  I'm sleeping in every morning and lying down in the afternoons.

I'm not totally back to my good level of functioning (I still can't read books) but I drove today.  With the radio on!  That is a first in over a year.  Whenever I've driven this past year I've had to turn off the radio due to it being too much stimulus for my poor brain.  I found it distracting and frazzled my nerves.  Today it was sunny, I had the window rolled down and the tunes on.  I felt normal.  The most normal I've felt since last fall.

I love pretending that I'm not sick when these moments strike even though I know they are fleeting.  I'll crash in a few minutes or an hour but in those few precious minutes I'm normal.  I can make pretend I will get better.  I can pretend I can shop, travel and have a life like a normal person.  It is such a glorious feeling.  Of course I had to lie down in the quiet and close my eyes when I got home but the trip home was wonderful and delicious and normal.

Monday, October 15, 2012

A Little Vacation

Lobster Pot, Lobster Pound, Lobster Claw, Lobster Pit, Lobster Shack, Lobster Shanty, Lobster & Clam Bar, The Laughin' Lobstah.  These are names of real restaurants I passed while driving around Cape Cod on a little vacation this past week.  Being slightly warped I started collecting names of lobster places even though I hate lobster.  (I prefer my fish served without the legs and eyes still attached.)  I couldn't get over the sheer number of lobster joints down there.  You would think that is the only type of food available.

Before I went on vacation, I was really worried about crashing.  Crashing from the drive.  Crashing from the activity.  Crashing from the new sleeping accommodations   You name it, I was worrying about it.  Including worrying that hubs would have an awful time from taking me on a trip where I couldn't participate in activities.  This is my first vacation since contracting CFS/ME so I had no idea what to expect and after the horrible reaction to the trip to York ME I was seriously stressing over things.

Now, one odd thing I've noticed and been playing with is the use of coffee for car trips.  It appears that if I drink coffee right before a car trip I have a less adverse neurological reaction to the trip.  Maybe it has to do with the blood vessel expansion keeping blood circulating in my head but that is a sheer guess on my part.  So before I set foot in the car I drank a large cup of coffee.  This seemed to work.  I would still have a degradation of my neurological function during the trip but it wasn't as severe and it decreased my recovery time.  This delighted me to no end since it meant I could legitimize drinking my favorite beverage again.

Another thing we did was stay at a resort with an ADA room (outfitted for persons with disabilities) .  This meant really comfy accommodations so that it was pleasant to stay in the room during rest times.  It was also really nice grounds so hubs could go walking while I was resting.  He took several long walks on the beach while I was snoozing.  Having an ADA room also meant that I was safe in the shower since it had grab bars and a shower seat and a handheld shower head.  I still can't stand while showering so this was great.

We kept the day trips short with lots of stops so it wasn't continuous driving which kept my neuro symptoms down.  We also looked for restaurants that served real food so we weren't eating junk.

Oh and National Parks are the bomb for people with disabilities.  They are very handicapped friendly.  There are ramps and all sorts of special access for people in wheelchairs such as mats on the beach and dunes.

We had a great time.
I got to rest when I needed to in a really nice room.
We stopped at many beaches and lighthouses.
Thanks to the National Park Service, I got to sit on the beach in my wheelchair with a kite tied to my armrest while hubs took a walk.  I got to listen to the surf, watch the gulls and clouds and get really strange looks from the tourists.
I got to eat lots of yummy food including the best fish and chips I've had in many years.
I got  to visit the  house where I grew up.  It is way tinier than I remember and the tree I used to climb as a kid is now gone.  Bummer.  Other than the tree it is just the same.
I got to visit the new ice skating rink that replaced the one where my parents worked and I learned how to speed skate.
Hubs got to walk around a nice place while I was resting.
I bought a new ring to replace my wedding band that no longer fits (I don't want to cut my antique band since I'm planning on loosing weight once I'm doing better).
We drove far more than I thought possible and covered way more miles than I thought I could tolerate.
I got to drink lots of coffee!  And even had some handcut donuts with it.
We visited monuments and drove through the dunes.
And after three days home I'm writing again.  This is miraculous.  I'm so happy!

So here is to resorts, coffee and National Parks!  Love you guys!

You wouldn't think going on vacation is legitimate when all I do is sit around the house but the change of scenery and pace has done wonders for my mood.  If you can tolerate it and plan for the CFS/ME weirdness then I highly recommend it.

Saturday, October 6, 2012

"Life is Good"

I don't know if this is from something I saw on TV or in a movie or if I read it somewhere.  The author/main character was searching for the meaning of happiness and sat down next to a homeless man in a park.  They got to discussing the philosophy of life and the homeless man said something along the lines of "Life is good when you can eat, sleep and poop."  I tend to agree.  It really is that simple.  If any one of these gets out of whack it is sheer misery.

Doing better today.  The plumbing isn't quite working properly yet but things are moving along.  I seem to have lost my appetite today.  To tell you the truth I'm kind of scared to eat solid food.  I'm worried it will get stuck again.  So today was a diet of yogurt, prunes, fermented cod liver oil, butter oil, coconut oil and homemade chicken soup with very overcooked rice.  I even had lots of tea and coffee.  Coffee always gets things moving.  So I'm still in pain but not as much.  I'm tired from the ordeal and don't feel quite right.

I managed to get out in the sun today finally after a week of rain.  The lack of sun exposure isn't helping things at all.  I also had my glutathione IV today.  So I'm hoping that my energy levels will bump up tomorrow.  Hopefully my guts will start behaving themselves.  I'll take the trots over this any day.  Ugh.

Friday, October 5, 2012

Sick Humor

Oh yeah!!

Bentonite Clay

I think the clay has come to the end of its usefulness in me.  The last two times I've used it is has clogged up my plumbing something fierce.  Today was the worst.  I have never had so much trouble pooping in my entire life and that includes after major surgeries.  UGH!!

After lots of water and chewing on prunes things are working again.  No more clay though.  I'll switch over to activated charcoal instead and monitor myself for any problems.  It is tricky since the effect doesn't happen until 24 hours or so after ingested.  If I do start clay again, it will be at half dose and chased by tons of water and prunes.

Of course if I behaved and stopped eating grains again, I wouldn't need the clay and charcoal.  Time to get back on Paleo/Primal.  I've convinced hubs and kid to do the Paleo Whole 30 with me.   I have to count back from Thanksgiving and squeeze it in before the holiday.  Kid said to make Tday Paleo but then I reminded him that meant no dinner rolls and no stuffing.  He didn't like that idea much.