Taking Care of Me

At one point this week when I was feeling quite frazzled and worn out and worried about my newly diagnosed friend with MS, a dear and wise friend (you know who you are!) told me:

I hope you make certain to take good care of yourself - especially right now when your friend is going through so much turmoil....To help her best, you need to make sure you take care of yourself...This is a long haul process  (making it even more important for you to take care of yourself so that you can be there for the long haul).

Her words really hit home, and I took her excellent advice.  I stayed in that evening - by myself - and ate a simple egg dinner (I love eggs) and watched a wonderful, girl-y movie while lying on the couch.  It all felt so decadent, doing things just for me and not letting all the need-to-dos in my head escape and taunt me.  It was just what I needed, and I don't know why I can never seem to remember this simple advice when I am feeling so drained and wiped out.

I suppose some of the problem is simply being a woman - we just naturally feel as if we need to take care of everyone around us, and it's easy to forget our own needs.  And some of the problem is uniquely mine - despite all of the positive life lessons CFS has taught me (to slow down, to drop the perfectionism, etc.), I still tend to put a lot of pressure on myself to do everything and get everything done.  It seems I am destined to keep re-learning this lesson over and over and over again.

Overall, this has been a good week for me, a rejuvenating week with the kids away and Ken away much of the week as well.  It is truly amazing to me how easy it is to take care of a household of just one person!  I've only run the dishwasher once since Sunday and haven't done a single load of laundry all week.  The cleaning service was here a week ago, and the floor is still clean!  I went grocery shopping on Monday and was done in 10 minutes (astounding).  I found that cooking for myself only was so simple, and I tended to a lighter, more vegetarian diet (why buy a whole package of meat for one person?). 

Of course, as I do every year during this brief respite, I didn't get nearly as much done as I expected to.  For some reason, I assume being alone in the house will turn me into a productive hurricane of activity, somehow forgetting that my pace of life now doesn't leave much time or energy for actual work.  But, in the end, it turned out to be a nice balance between productivity and relaxing and between some much-needed social interaction and even-more-needed alone time.

And now this little pocket of quiet is coming to an end...just as I was getting the hang of it!  We will go to pick up the kids tomorrow, and life will return to its noisy, chaotic standard.  I'm sure the kids will be exhausted from their week with Gramie & Pop Pop, so I'm looking forward to relaxing with them on Sunday and enjoying some favorite shows together (the first season of Glee finally came in at the library - I can't wait!).

And this time, I swear I will remember to take care of myself.  No, really!  Well, if I forget, perhaps you can remind me.  And I will remind you - take care of yourself or you'll be no good to anyone else.  Enjoy the weekend!

Accepting the Gorilla in Your House

I mentioned a close friend was recently diagnosed with MS and is struggling to accept her new life.  Today, another friend (thanks, Denise!) sent along this wonderful essay about acceptance that I will definitely share with my friend.  In her current state of stress and anxiety, she is especially appreciative of humor, so I know this will hit the spot.  Hope you enjoy it, too:

By Helen Scott-Jackson

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS/doctors) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

Some people get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house."

I especially like that last paragraph!  If you'd prefer to listen to it, here is a Youtube video of someone reading it.

Ah, nothing like a good laugh to brighten your day!

Movie Tuesday 7/26

(sigh)...Tuesday afternoon (almost evening) already, and I still haven't written my usual Monday post, let alone any posts last week.  Things have been very busy lately, to say the least. 

One of my closest friends has recently been diagnosed with MS, and she is really struggling emotionally.  She is one of the few people that knew me well both before and after CFS and was there for me every step of the way, so I am trying to be there for her now.  Last week, I had her two boys (best friends of my own boys) over here most days, and this week, with my kids away for the week, I am trying to spend lots of time with her and support her.

On the plus side, yes, my boys are away for the week - on their annual sailing trip with their grandparents - so I am also trying to enjoy the very rare peace and solitude!  I had hoped (as I do every year - will I ever learn?) to get caught up on all sorts of things this week, but it's not really working out that way.  As you can see, I am still behind!

Anyway, last week was a crazy busy blur filled with lots of teen boys (with big appetites), packing the kids up for their trip, and this weekend, driving them to CT.  Then, Ken surprised me with an overnight getaway on Saturday for my birthday, which was very nice. 

So, there was no time for movies last week, though the kids and I still squeezed in a few episodes of The Mentalist and Bones.  On Sunday night, after Ken left for a trip, I was a total lazy bum and watched movies (chick flicks!) for hours:

• Nine Lives was a Sundance winner, a thoughtful combination of vignettes about nine different women all going through different challenges in their lives.  Each vignette was only about 12-15 minutes, so it was an unusual kind of movie, though the stories did begin to intersect a bit partway through.  I enjoyed it (and Ken wouldn't have!).
• Then for some pure fun fluff, I watched a couple of movies on FX.  The first was 13 Going on 30, a fairly predictable but pleasant story about a 13-year old girl who wishes she could skip her painful adolescence and be 30, and then, of course, her wish comes true and it isn't quite what she thought it would be.  It was cute and fun, and I liked Jennifer Garner and Mark Ruffalo in the lead roles.  I especially enjoyed the 80's scenes when she was 13!
• I really meant to go upstairs and read after that but got sucked into the next FX movie as well!  The Proposal was a typical romantic comedy starring Sandra Bullock who I really like.  She played a hard-ass NYC editor (much like Jennifer Garner's character in the previous movie!) whose work visa expires and is in danger of being deported to Canada.  Instead, she orders her executive assistant to marry her so she can stay.  They go to Alaska to meet his family and put on a good show for the INS and...well, I'm sure you can guess the rest.  Again, predictable but pleasant fluff!

Have you seen any good movies lately?

(If you are interested in what we're reading this week, check out the Monday post on my book blog.)

Movie Monday 7/18

Ah, today was a very quiet day around here.  The boys were still wiped out from a Saturday night sleep-over, plus Jamie and I were both still tired from visiting University of Delaware on Saturday (LOTS of walking!).

We did, however, find some time for movies this weekend, and they were all great:

• How about the big news first?  We actually saw a movie in the theater!  Yup, the only one we get to each year...Harry Potter (what will we do now that the series is finished?).  We took the boys and a friend of theirs to see Harry Potter and the Deathly Hallows, Part 2, yesterday, and it was fabulous, of course.  I also finished re-reading the book yesterday, and the boys and their friend watched movie #6 and #7, part 1, to catch their friend up before we went, so it was an all-Harry Potter day.  Lots of fun!  The movie was excellent, just like all the others, and a great ending to the series.
• Friday night, we watched Toy Story 3 with the kids, one of many big movies we meant to see in the theater and just never did.  It was wonderful, just as everyone said it was.  The whole series is just so incredibly clever, plus funny and touching.  I cried when Andy left for college (and Craig made fun of me again!).  Whatever will I do next year when it is my own Jamie leaving for college?  I think he teared up a bit, too.  Only Pixar can make me cry over animated characters (I cried at Up, too).
• While the boys were enjoying their sleepover Saturday night, Ken and I watched Pirate Radio and loved it!  It's about a pirate radio station on a boat off the coast of England in the 60's (apparently the regular British radio wouldn't play any rock 'n roll).  The disc jockeys are hilarious (one of whom is played by Philip Seymour Hoffman), the story is lots of fun, and the soundtrack is amazing!  Sex, drugs, and rock 'n roll...what's not to like?
• Finally, we have been using the summertime TV lull to catch up on some old favorite TV shows and get into some new ones.  Resting today, the boys watched back-to-back episodes of The Mentalist all afternoon!  We just started watching Bones this past season, so we're having fun watching season 1 and seeing how the series started.  And Ken and I are continuing to make our way (slowly) through past seasons of Mad Men.

Have you seen any good movies lately?

(If you are interested in what my family and I are reading this week, check out the Monday post on my book blog.)

Summertime and the Living is...Crazy?

Whew.  Isn't summer supposed to be relaxed and easy?  Vacation was nice, with no to-do list or errands to run, but ever since we returned, I feel like I've been running on a giant gerbil wheel!

The kids and I have been running non-stop with doctor's appointments, shopping, errands, etc.  And most of what is keeping me so busy is all stuff that needs to be done again and again, so it doesn't seem like I'm actually making any forward progress - gerbil wheel, remember?  I've hardly done anything at all with respect to writing (supposedly my job!) since I got back.

Also, my sons are both teenagers now, so they're less content to just play here at the house with their friends.  My youngest has been needing rides all over town ever since we got back.  The only good aspect of this is that my oldest can now drive himself, so he has been helping with the taxi service a bit and taking care of his own driving needs.

So, the boys are out right now, and I am enjoying this rare moment of quiet solitude.  They went to Gamestop to buy a new game with some gift cards they had, and I am thrilled that I do not have to accompany them on this mission!  I am really missing my quiet, productive mornings to myself that I enjoy during the school year.

On the other hand, it is a huge relief to us not to have to worry about my oldest feeling well enough to go to school or how he will ever make-up all the work he's missed.  Summer is a lovely respite from all that anxiety, when he can just lie on the couch and spend a day watching movies whenever he needs to.  It's also nice having a break from homework, which makes our evenings stressful.  When your kids have to be in bed by 8 pm (and sometimes come home from school exhausted), it can be a challenge to fit in hours of homework, along with soccer and after-school activities.  And I don't have to get up at 7 am every day (nor my husband at 6 am). 

There are definite advantages to summertime.  I just need to find some time (or make some time) to relax and take care of myself.  The boys will be spending a week on their grandparents' sailboat soon, and I am looking forward to that week alone, when I can rest up and maybe even catch up.

Well, it's 11:30 am on a Friday, so I have decided that I am off-duty for the weekend!  Well, at least until tomorrow morning when we have a college visit with Jamie...

Rejected!

I returned home from vacation to find a response from the Social Security Administration in my mail.

The good news is that they have determined I am not disabled and can still work full-time as a management consultant - hey, isn't that great?  I wish I knew that years ago... think of all the income I could have been earning!

Specifically, they said:

We have determined that your condition was not disabling on any date...

While your conditions caused you to experience occasional bouts of extreme fatigue, the evidence shows your energy level was adequate for your daily activities.  Based on your description of the job you performed as a consultant, we have concluded that you have the ability to perform this same type of work as it is usually performed in the national economy.

Even though I expected to be rejected, this wording still feels like a slap in the face.  My state, Delaware, has one of the lowest approval rates in the U.S. (I think we're fourth worst with only a 37% approval rate in the first step).

I talked to my lawyer today, and they said it's no big deal, to be expected, and they will file the appeal for me.  I kept asking in-depth questions about what else I could send in to prove I'm disabled, but my contact just laughed and told me I'm reading way too much into what is likely a form rejection letter.  She said this is all normal procedure, they'll take care of it and will let me now if they need anything else.

So, more waiting now.

Movie Monday 7/11

I better hurry....I'm running out of Monday!

Very hectic day.  My husband had his first-ever colonoscopy today, so I had to take him which made for a long morning of waiting (everything is good and he doesn't have to go back for 10 years).  That, plus running my younger son and his friends all over town pretty much wore me out.  And I didn't get my usual Monday blog time either!

So, movies.  Since we returned from vacation last week, we have watched a few oldies but goodies - all movies Ken and I had seen before (some many years ago) but new to the kids:

• We ate at a Bubba Gump's restaurant in California, so we decided the kids needed to see Forrest Gump when we got home so they'd understand all the memorobilia and sayings they saw.  The movie is a cultural icon; it's just so clever.  We all enjoyed it and laughed a lot (and I cried!). 
• At the urging of a 92-year old woman we met in California (my aunt runs a care home), we watched Cocoon with the kids when we got home.  They weren't too thrilled with my description of the movie (it's hard to describe without giving too much away) but ended up loving it.  Another very clever, funny, heart-warming movie.  They just loved the old people (but of course, if you say it's a movie about old people, it sounds really boring).
• Tonight, we watched Ghost Town, a very funny romantic comedy.  Again, I had trouble convincing the kids it was good (you'd think they'd trust me by now!), but when they saw it starred Ricky Gervais, they were sold.  They ended up loving it.  Gervais is absolutely hilarious in this movie as a socially inept dentist who can see dead people.  Greg Kinnear and Tea Leoni are also great in it.

How about you - have you seen any good movies lately?

The Afternoon Slump

I hate afternoons.  Maybe that seems severe, but it's a consistent low point for me, every day.  I was just lying on my bed after my nap, trying to find the energy to get up and write a more in-depth blog post on another topic, and I just...couldn't...do...it.

I know everyone with ME/CFS is different and many of us have different high and low points, but my daily rhythm is the same, day after day.

As long as I get enough sleep (at least 9 hours, 10 is better), then I usually wake up feeling OK.  Morning is my productive time of day.  Once I've had breakfast (I wake up starving, thanks to low blood sugar) and my medications, I usually have some energy and can get some things done.  Sure, I have bad crash days like everyone else, but with my current regimen of medications, I can often function almost normally in the morning.  I spend some time on the laptop, make phone calls, try to work a little, and can even usually manage some errands. 

Afternoon is a whole different story.  Once I've had lunch (again, usually starving by noon!), it's all downhill.  I learned early on in my illness that preventative rest is very important for me, so I take a nap every day after lunch.  No matter how good I feel during the morning hours, I am ready to lie down and rest by early afternoon.  I do actually sleep during my rest time, and my entire family (and my kids' friends!) know this is a sacred ritual for me.  I take two Valerian (a mild herbal sedative) to help me relax, darken my bedroom, and cover my eyes.  I usually read for a little while first in bed, but then I close my eyes and almost always fall asleep (another thing that helps me fall asleep is to put on warm socks - I read somewhere that warming your feet helps you sleep and it's true!).

As much as I need that nap, I usually wake up feeling groggy at first.  During that post-nap period of late afternoon (worst time of day for me), I have no energy.  I feel like my limbs are filled with wet cement.  Even when there are urgent things I need to do, I can barely motivate myself to do anything.  I just want to lie in bed with my book or on the couch watching mindless TV.  My brain, which was lively and functioning well hours before, feels sluggish and slow.  I have learned not to schedule anything in the late afternoons, so I can just go with the flow and rest.  This is the time I generally set aside for visiting blogs and for writing my own blog (which explains why I haven't been keeping up with them very well!).

By dinnertime, I am usually starting to perk up, though I often have to force myself up off the couch to make dinner.  Once I eat dinner, I usually feel OK again; I don't have the high energy of morning, but I am able to enjoy my evening (this is why we often eat dinner very early, at 5-6 pm).  By about 8 pm, I am wearing down a bit and glad to spend an hour or two relaxing with a movie or TV show with my family.  I go to bed about 10 or 11 (in summer) and start the cycle all over again.

Despite feeling so rotten after my nap, I know I am even worse if I skip it.  Several times on vacation, I wasn't able to take my nap until 4 or 5 pm, and I really suffered for it!  By 3 pm, I can hardly keep my eyes open, and by 4 pm, full-blown crash symptoms are starting to creep in.

So, I know the nap helps, but I still dread the late afternoon. 

Oh, shoot....it's almost 5 pm.  I'll have to drag myself up to get dinner ready soon.

How about you?  What's your daily rhythm?  Do you also dread afternoons or do you have your own slump at a different time of day?

Back From Vacation!!

Hi, everyone!  We arrived back home at 2 am this morning from our 3-week vacation in California.  Sorry to just sort of disappear, but I didn't want to announce on the internet that we'd be gone for 3 weeks.  Also, I was seriously ill with bronchitis before we left, so I had no time at all for blog posts the week before the trip.  Thanks to those of you who checked in on me and asked if I was OK.

I have 882 e-mails, a huge bin of mail, piles of dirty laundry, and a washing machine that's been holding wet towels for 3 weeks (eww!), but I'm too exhausted  to deal with any of it.  I'm too worn out for blog posting, either, but it just occurred to me that it might be nice to talk to people who would understand.

Don't get me wrong - it was a fabulous vacation!  We visited mountains, beaches, waterfalls, and cities.  We camped and stayed in nice hotels and even spent two nights in a treehouse!  We've taken a lot of great trips, and this was one of the best.

But, I got very, very sick while we were out there.  The bronchitis I had before we left came back with a vengeance during the second week of the trip, and we spent a half a day trying to get through to my doctor to refill my antibiotics.  So, now here I am, after another 8 days on abx (10 days for the first round), and I am still horribly sick - still very congested plus totally exhausted.  Of course, despite being so sick, I just kept going and pushing myself.  I didn't want to miss out on anything or ruin my family's vacation.  And I DID enjoy it, but I know I pushed way too far.

So, I am trying to rest, though it's hard with so much to do.  I suspect I will be back at the doctor's office when they re-open after the holiday weekend.

I probably won't be posting much this weekend, but in the meantime, please feel free to take a look at our family trip blog if you'd like to see pictures of how we spent the past 3 weeks.  If you scroll down to June 10, 2011, you can see the posts in order.

Enjoy the holiday weekend - I missed you guys!