Thursday, May 24, 2012

Sunshine on my Shoulders

"Sunshine on my shoulders makes me happy." -John Denver song

So here is some more on sunshine exposure:

I'm a bit to fried to knit this together with what I've been reading from Stephanie Seneff but she is Mommypotamus' source of info.  To go right to the source read Dr. Seneff's blog here.

Tuesday, May 22, 2012

The Next Day

Doing a bit better today.  I've finally managed to ditch the walker.  Still hanging on to the odd countertop when the dizzies start.  Still can't stand more than a minute.  Made my breakfast sitting in my walker which conveniently makes me stove height.

Still haven't had "the talk" with hubs.  However, yesterday's event has already been dubbed "the epic meltdown".  He has asked me if it going to happen again several times so it is bugging him.  I told him I was doing much better today so I seriously doubt it.

I think back and I still can't believe it happened.  It SO uncharacteristic of me.  I'm someone who didn't cry for 20 years straight.  No kidding.  I was keeping track.   I'm so stable that I had a theater director once say that if I ever found a dead body under the stage I would just walk up to him and in a quiet calm voice let him know about it.  So, yes, yesterday was brain chemistry gone wild day.

Now I just have to try to get hubs to understand.

Mother of All Tantrums

Dang.  I seriously lost it today.  I mean a full-on, lie on the floor, cry my heart out, melt down that would rival any two year old's tantrum.  God I hate this illness.

Okay lets back up here a bit.  I went away this weekend.  I took a three hour trip to Vermont with hubs to visit our friends.  I had a great time and I'm really glad I went.  I knew I would be cooked when I got back but hey I really like visiting these guys.  We had to take the truck which isn't my vehicle of choice for trips since it rides bumpy and it is loud which I knew would make me worse.  However, because my kid took my car after he wrecked his own (he is okay) we didn't have any choice in the matter.  So two three hour car trips, lots of talking, not getting enough sleep, not getting enough food, too much fun later, I'm crashing.  Add to that, a trip to Cambridge for my IV and a trip to my chiro for my weekly adjustment and, hell yes, I was in bed by the time hubs got home from work today.  Lets just say he was NOT pleased.  I believe "fanfuckingtastic" was his exact words.

I asked for Chinese take out since I obviously couldn't cook.  His reply was I get fajitas from Chili's or nothing.  He just spent two hours in traffic trying to get home and he wasn't going to go to two places to pick up dinner.  I guess he wanted fajitas, damn it.  Being stuck in bed and barely able to talk this meant I had to agree or I get nothing for dinner.  In the words of Kosh "And so it begins."

Hubs went to get the food and I fell asleep again.  I wake up when he gets home.  I'm now using my walker to get around.  It takes me close to five minutes to get from the bedroom down the hall to the kitchen.  My feet are dragging, my head is bobbing and I'm fast loosing command of my limbs.  My speech is long gone.  My ability to process information has all but crawled to a halt.  I sit down.   He plops a styrofoam container in front of me.

Now, fajitas require considerable dexterity to assemble and eat.  I have a pile of tortillas, a pile of chicken, a pile of onions and four mini-containers full of condiments.  I look like I'm in slow motion.  I have to stare at the condiment cup in the styrofoam container, decide I need to pick it up and take the lid off, reach over, actually pick it up, wrestle the lid off, place the lid somewhere, find someplace to put the cup and actually place the cup down.  This takes about a minute or so for one cup.  I have to do this four times.  Then I have to figure out where I can put down the tortillas since they are on top of the meat/onion pile.  Then I have to actually do it.  Now my food is finally laid out on the table so that I can start filling a tortilla with food so that I can eat it.  I get a tortilla, find a spoon (hubs didn't give me a knife to work with), spread sour cream on the tortilla with the spoon, spread guacamole on it, sprinkle cheese on it, I manage to fish out some tomatoes from the pico de gaio, I balance the spoon in the styrofoam cartoon, I find the fork, I pick up the fork, I pick up a piece of chicken, and another and another (crap they are stuck together) and another.  I put a few onions on the top.  I am now shaking like crazy.  I look like I have Parkinsons.  I'm slumped over the table at an odd angle, my head is dropped to my chest, my hands are shaking.  Now I am attempting to roll my bundle of food up, hold it together and get it to my mouth without having it explode.

At this point my brain implodes.  This is too difficult for me.  A plate of Chinese would be so much easier to handle.  Instead I'm trying to do food origami with hands that can't even hold a cup.  I throw the food down, burst into tears and hurl myself away from the table.  I'm trying to run and hide but I can't control my body.  I'm too tired.  I'm too exhausted.  Instead manage a few steps until I run out of countertop and end up going to my knees and then to the floor.  So here I am, a 50 year old woman, sobbing her heart out face down in the middle of the kitchen floor.   Hubs is still pissed so he ignores this for a bit hoping it will all go away.  It doesn't.  I get worse.  He comes over and tells me to get up.  Bwahahahaha!!  Like I can do that.  I keep sobbing.  He starts circling me.  A box of kleenex lands next to my head.  He circles some more.  He wants me up.  He helps me to get seated.  I'm still crying.  He wants me up.  He goes and gets my wheelchair and puts it next to me.  He wants me up.  He puts his hands out for me to grab so that I can get up.  He gives up waiting for me to do it on my own and hauls me up and into the wheelchair.  He wheels me back to the table.  I'm still crying.  He takes my food away and puts it onto a plate and cuts it up for me.  He brings it back along with a glass of water.  I grab the water cup with two hands and start drinking.  It helped a little and I stop crying.  I pick up the fork and try to get my limbs to behave and spear some chicken.  I start crying again.  I'm so horribly embarrassed.  I'm so angry that I'm having so much trouble feeding myself.  I finally manage to reduce the tears to sniffles and get some food in my mouth.  I have to chew really well and slowly since my throat is now swollen and I can't swallow easily.  I have to spit out a bit of stingy chicken.  Hubs asks if it tastes okay and I tell him I can't swallow.  He tells me to look up and straighten my head up.  I hadn't realized how collapsed forward I was.  My chin was almost on my chest.  No wonder it was hard to swallow.

Hubs gets up and leave me to my dinner since I'm being all weird.  My motions are all jerky.  I'm eating with my mouth open because I keep forgetting to close it and chew at the same time.  I can only concentrate on one movement at a time.  He hates chewing noises.  I'm chewing everything much more than normal because I don't want to choke.  I need the food really pulverized so that I can swallow it.  I slowly make my way through the plate of food sans tortillas until I finally run out. I think about an hour has passed since I woke up.  I finish my water.  He comes back to the table and asks me if I'm done.  I still can't talk so I grunt and shove my plate away.  He asks me if I want to go back to bed or sit on the couch.  I've been in bed all afternoon and Dancing with the Stars finals is on tonight so I opt for the couch.  He wheels me over to the two steps down to the living room.  He helps me up from the chair and down the steps.  I plop on the couch and get the remote control.  TV on and me settled he goes off to do dishes and laundry.  Other than the occasional "Can I get you anything?" question we don't talk the rest of the night.  He is now safely ensconced in bed sleeping.  I'm somewhat coherent.  You'll have to forgive me if this post isn't written too well.  Meh.

Another day in the life with chronic illness.

BTW, hubs and I will talk about this.  I want to have a discussion with him about this.  I need to apologize for my crap behavior.  His behavior wasn't stellar either but I haven't decided how to broach that subject yet.  He had a crappy ride home from work.  He didn't want to go out again.  Been there, done that myself.  I know how bad traffic can be around here. I had to do the same commute for 12 years and know how shitty it can be so he gets some leeway with regards to that.  But, I have a funny feeling that there is something left over from the weekend.  He got weird with me when we were still in VT. I could feel something brewing just below the surface yesterday.  My being in bed when he got home today was the proverbial last straw and he snapped.  I need to find out what is going on underneath the grumpiness.  Something was eating at him.  This discussion will be put off for now though.  I'm too sick to deal right now.  There is no way I can enter into a verbal sparring match or do the mental gymnastics required to solve this problem.  But this discussion will happen.  It has to even if it has to wait until next week.  Wish me luck.

Friday, May 18, 2012

Mr. Golden Sun

"Oh, Mr. Sun, Sun, Mr. Golden Sun,
Please shine down on me.

Oh Mr. Sun, Sun, Mr. Golden Sun,
Hiding behind a tree

These little children are asking you
To please come out so we can play with you.

Oh Mr. Sun, Sun, Mr. Golden Sun,
Please shine down on,
please shine down on,
Please shine down on me."

-author unknown

I used to sing this song with my son when he was little.  I was singing it to myself while I lay outside sunbathing today.

It seems that I didn't have to wait until next winter to find out that sun exposure is critical to my energy levels.  We have had three weeks of lousy weather here in New England.  Typically it has been 4-5 days of rain interspersed with one or two days of sun or partial sun.  By the fourth day of sun deprivation, it is like my batteries start running down.  As soon as I sit out in the sun with as much of my body exposed as possible without scaring the neighbor's off, I feel better the next day.  My head is clearer.  The fog lifts.  I can do more stuff.  I'm up on my feet more.  I can even read a bit.  

If you haven't read my previous posts, my skin chemistry has changed due to eating pastured, grass fed meats and drastically reducing grains and sugar.  I'm sort of following a Primal diet.  Interesting thing is that although I sit out in direct sunlight with NO sunscreen on for a minimum of 30 minutes, often longer, I have not had a single sunburn (and I used to burn really easily) and after sunbathing for two months now I am just starting to show a slight tan.

I am currently reading Cure Tooth Decay and just waded through a chapter on vit A, D and gland function.  I haven't connected it with cell function and energy generation yet, but I feel like I'm getting closer to understanding the connections.  I'm hoping to write a long post about it in a few months when I get a better handle on the interrelations.

In the meantime, I continue to strive to eat a clean Primal diet and sit outside as much as possible.   Here is the song for today:

Wednesday, May 9, 2012

Happy Anniversary!

Today is my two year anniversary.  No.  Not my marriage.  Two years ago today I came down with the virus that lead to CFS/ME.  As befitting the occasion, I'm too crashed to actually write much.  I just wanted to mark the occasion with a post.

I'm doing better than I was last year.  Whew!  But I've got a long way to go before I'm anywhere near functional in this world.  I just thank my lucky stars that I can dress, feed and shower myself.  I can potter around the house a little bit and make it out onto the deck to sit in the sun.  To have that much freedom with this illness is such a great thing.  Of course I'm hoping that my recovery will continue but that is really a wait and see.

So, here is to another year of life with CFS/ME!  Cheers!