How Ya Feeling?

 Recently, I have had people inquire if I am feeling better.  Which made me realize most people don't understand fibromyalgia.

It is not like other conditions or diseases-it's more like a roller coaster than a steady decline, or a bad spell followed by recovery.  And, it is different for each person.  Everyone has different aches and pains, different side affects, different reactions to medications. I have read accounts of other people that have it on blogs and yahoo groups, Facebook and real books.  I actually consider myself fairly lucky, in terms of the symptoms I have, the support system I have, the job I have.  Which does not mean I don't know how to throw a humdinger of a pity party though.

Here, in a nutshell, is what it is like to be me, with fibro.

Each day I wake up, after a not-very-restful-night of sleep.  I get out of bed and take a few agonizing steps until my legs begin working (which almost ALWAYS happens) while I assess my general body. By the time I have walked the 9 steps to the toilet, I have figured out what, if anything, is hurting (my therapist wants me to keep a journal to figure out any trends).

---At the beginning of my diagnosis, my husband and I would try to figure out what each ache could be attributed to.  This is futile, and depressing, because ultimately, you might hear your significant other say, "Maybe you ate too many shrimp this past week", or "Well, you DID work 5 hours yesterday", and then you get more depressed. See? Useless.---

So, I just make a mental note, then go on with the morning.  Pretty quickly, I figure out how things are going to go.  Some days, I wake up with energy and a happy body (and I will in no uncertain terms ruin that all by overdoing it, to take advantage of feeling so great...), and other days either my body, my mind or more spirit lets me know they are NOT on board with the plans for the day.  Even if those plans are just to get up and not swear at the kids. (Can you tell which things failed me THIS morning? Yep, body AND spirit-sorry about the grumpies...).

Each day is a complete reset. Yesterday usually doesn't have much to do with today.  Unless I overdid it.  Then, I will pay, except on the rare days I don't. See?

Remember the Spoon theory?  Each day, you have so many spoons.  Each spoon represents your ability to do things, like take a shower, call a friend, drive somewhere.  Once you spend all your spoons, you are done for the day, regardless of when you run out of spoons.  And, the number of spoons you wake up with is not predetermined. There's no way to know how many you will wake with.

Some days, I have tons of energy, and a little pain. Some days, no pain.  Some days, tons of energy, and tons of pain. Or, I feel fine (in my body) but I am grumpy, uncomfortable in my own skin.  Yes, I know, that is called depression.  I have it, been diagnosed with it, being treated for it.  It comes with Fibro.

And, my worst pain (usually) is in my arms-typically my elbows and wrists, sometimes hands. I know others that can't stand the leg pain. Or, back pain.  Each person is unique.

So, when I am having a good pain day, it unfortunately has no bearing on whether tomorrow will be a high pain day, or low pain day. Sometimes, the pain is hard to localize. Meaning, my body just has a low-level ache that encompasses everything. 

The mental aspect of it sucks too. Not only do I have a raging case of fibro fog-short-term memory loss-but it all really bums me out.  I mean, I know i have stuff to be depressed about, but normally I'm a pretty upbeat person.  And, sometimes the mind kind of takes over.

Most of all, I think about my body and my health almost all the time. I know that is not healthy, but I also know that it will ease up after some time. My husband keeps telling me that once we get through our first year since my diagnosis (Jan 2011), we will know how we navigated each thing we do, each weather change, each family gathering, each week. From there, I am hoping some of this will begin to come naturally.

Today, I had a great chat with a former colleague who found out she no longer has MS.  Yep.  NO LONGER HAS IT.  Her doctor said that he now believes in miracles.  One thing she said stuck with me, and that is that she never wanted to BECOME her disease. So, she told almost no one. Then, when she found out she didn't have it any longer, she realized despite her best efforts, she had become her disease.

I have become, for now, my fibro. My Reynaud's, my RA.  It's all me.  The person I used to be seems to be gone for now.  You know the one-the one that did so much, accomplished tons, was busy busy busy, and crammed everything she could into one day.  I would partially swallow, just to bite off more.  Now, it seems as if showering AND shaving, along with one trip to the store, and one doctor's appointment is TOO MUCH.  And right now, this crap seems to have taken over my life. I know that this, too, shall pass. One day, I may find that, even though the pain is not gone, I do not obsess about each ache. I will go through my days like they are normal, skimming over the discomfort, adapting to each number of spoons as if by rote.  I will be able to see the positive in everything more regularly, and my posts will be more about how awesome everything is, despite fibro. Not about how crappy everything has become because of fibro.


I do know that this year will come to an end.  I will look back, and I will see a lot of change, a lot of pain, a lot of hurt, and a lot of knowledge.  I hope that I can look upon the year and be thankful, more than filled with remorse for the life I have left behind.  I hope that I can dream of a day when all this is behind me, when the fibro is gone, when I can choose to tackle too much, plan a lot, be busy, if only for a brief time.
While I miss my old, pain-free life, my quick mind, my seemingly boundless energy, there are things I do not miss.

I don't miss being so busy.  I don't miss checking my calendar, only to note that I obligated the entire family to too much, and there is no room in our schedule for a bike ride, a spontaneous dinner with friends, a last-minute opportunity.

Coping with friends and family

Let me start by saying that I love my family. I love my friends, I love my in-laws.  And, I love the time I get with them. In fact, each summer my husband's extended family descends upon our home for weeks of BBQs, fun, frivolity, and complaints from the neighbors.  Typically, it is a fun-filled, food-centered madness inspired period of time, with more wine bottles destroyed than one could reasonably assume could be consumed by such a limited number of adults.
This year has been no exception. However, it has been markedly different.

1. I can't drink.  Anti-depressants mixed with depressants (how can WINE be a DEPRESSANT???) equals bad bad bad.
2. I have been limited by Sky King to 3 things a week. Houseguests should count as 1 thing per guest per night. I am SOOO over limit.
3. I can't do much in the housework department
4. I have WAYYYYY less energy
5. I get sick of discussing my health, yet get irritated when people don't automatically KNOW and REALIZE I'M JUST NOT UP TO IT/CAN'T DO IT/NEED A BREAK. Yes, they should read my mind, and it IS all about me. Deal with it.
6. I have a certain FUN AIMEE reputation to uphold, and it is significantly more difficult without Mojitos.
7. I can't eat ranch dip.

OK, those last 2 are a bit of a stretch, but really, this is my first year truly dealing with all my issues, and having them be as bad as they currently are. 
However, I am surviving (so far).  Here is how:

1. Sky King-he is constantly checking in on me, and maintaining working order on everything so that we can all enjoy our time together.  Normally, he is FAB, but he has brought FAB to stellar levels of late. Special favors are overdue (TMI, I know...)  In fact, he is out right now, with the GUYS, and I am thrilled that he gets a break from me.  I wish he wasn't so worried about me, once in a while
2. Meditation-My therapist has pushed this on me over and over.  Excusing myself for a 20 minute break to my room, with noise-canceling headphones for a meditation session has truly allowed me to hit the reset button on my feelings of being overwhelmed.
3. Letting others help-this has been the hardest to adjust to: I'm notorious for doing too much.  In the past 2 weeks, I have:

• taken the trash out 0 times
• emptied the dishwasher 1 time
• cooked 2 side dishes
• shopped for groceries 1 time (with assistance!)

Now, how have I done this, you ask? I have followed some rules.  Here they are, in no particular order:

• When someone asks, "What can I do to help?" (which someone ALWAYS does), I give them something.  Then, I walk away when I am done with what I was doing. I may even delegate that task out, too!
• I have shared with just about everyone what is going on with my health.  They have all understood, even more than I could have hoped, and I got over being weird about sharing the info
• I take time for me, to reconnect, center, reset, even if only for a while, and even with a pool full of screaming kids just beyond the door.
• I am more tuned in to my needs. If I am tired, I sleep.  No one has given me a hard time for laying around, and schlepping off to bed at 11, when the house is full of guests-they have all been tremendously understanding.

Maybe I am truly fortunate, blessed with people that "knew me when" and know that I am truly sick, not being a big baby or faker.  Maybe I have just surrounded myself with great people.  I don't know, but whatever it is, I am a very lucky person.

Also, my kids and husband have been amazing.  I have not sailed through this without some hard times, but i would rather have some extra hard times and not miss out on all these memories.