The Difference a Year Makes?

So, I've been thinking (a dangerous past time, I know.)  A year ago, I was getting ready to fly to Minnesota to go to the Mayo Clinic, where I would consult with doctors and determine the cause of my headaches.  First, I cannot believe it was a year ago.  Second, I cannot believe I feel essentially the same as I did then.

I have been off of the medication the neurologist at the Mayo Clinic suggested I try for about 5 weeks now.  After being on it nearly ten months, I had determined that it just wasn't working.  I do think that it decreased the pain by about 5 percent or so, but when all is said and done, that tiny amount of "relief" it was giving me did absolutely nothing for me.  When the days were bad, I still had to go to bed.  When the days were medium, I still had to try to function with an ice pick in my head.  When the days were good, I still had to operate with a lingering headache in the background.  It's just that it hurt a teeny bit less.  And the side effects just weren't worth it any more.  I was going through life feeling as if I had to drag myself through wet cement.  I was exhausted.  Not to mention the three times a night I had to get up to use the bathroom. (And that's not just cuz I'm old, Emily.) ;)

I decided I'd be better off without the medication.  It was a good decision.  I still am tired all of the time--a side effect of chronic pain.  But, it feels more like moving through mud or pudding than the hardening cement of medicated life.  And it's nice to not get as dizzy when I stand up.  Sure, my head hurts a tiny bit more, but not much.  And my lifestyle hasn't changed a bit since stopping.  (I'm still pathetic, just like I was before.)

So, what now?  Well, nothing.  There is no cure for my chronic condition, which is not caused by anything other than the condition I have, namely Chronic Daily Migraine.  To be diagnosed with true primary Chronic Daily Headache or Migraine, there must be no underlying cause, which is true in my case.  As it says on the Mayo Clinic website,

"The causes of many chronic daily headaches aren't well understood. True (primary) chronic daily headaches don't have an identifiable underlying cause. They may occur if:

• You develop a heightened response to pain signals
• The part of your brain that suppresses pain signals isn't working properly."

It's my brain.  It's how I am wired.  Lucky me.  And I think I can safely say that I have reached the point where I have exhausted my resources in trying to prevent the headache.  As the website puts it,

"Unfortunately, some chronic daily headaches remain resistant to all medications." 

So, now my focus has got to be on just living with the headaches.  (I should say headache--it never stops, so it technically is just one headache.  And I think it's been around long enough that it has earned a capital H, don't you?  Headache.)  Fortunately, there are things that can help the Headache.  I have some pain medication that sometimes helps (not very much today).  Ice packs, dark rooms, quiet, anti-nausea pills, massage, muscle relaxants, caffeine and my painkiller sometimes help.  Avoiding stress, being overheated, and strong perfumes can be beneficial.  Occasionally decongestants help.  The best thing I do to deal with the Headache is pray my guts out and change my expectations.
I have to expect less out of my day.  Expect to accomplish less than those long-ago pre-headache days, and learn to budget my time and energy.  I think I'm getting better at this all of the time, but, frankly, it kind of stinks. 

Imagine that I have a handful of tokens I cash in for my energy or time out of bed for each day--say, seven.  Well, some days, just getting out of bed and showering can use three or four.  Sometimes less.  But always at least one.  I must carefully weigh my options in "spending" these tokens.  Should I skip the shower and make-up so I can clean the shower?  Should I do the grocery shopping or cook dinner?  Can I meet someone for lunch and still have enough left in me to stop at Target on the way home and get dinner on the table?  Probably not if I shower.  Should I go jogging and use them all in thirty minutes?  (This never wins.)  And all this I decide in the morning when I am generally feeling my best.

If I overspend too early, I'm out of tokens and in bed before the girls are even home from school.  If I underspend, I have a higher chance of quality evening time, but I may spend too much time stressing about the things that I "should" be doing, which actually can deplete tokens as well, or at least contribute to the Headache.  Sometimes I can conserve tokens by having a power nap with my ice pack in the middle of the day.  (I think sometimes I fantasize about naps with ice packs like a pre-teen girl fantasizes about meeting Justin Beiber and his hair.)  I never know how I will feel from one day to the next, and sometimes even one hour to the next, so even carefully planned token spending can go awry.

If I want to do something like go to an evening polka dance, I must be careful about how many tokens I use that day.  Occasionally, I can borrow tokens from the next day, but I generally have to pay them back with a hefty interest--usually I'll have a horrid headache the next day and will probably spend the majority of the day in bed.  Also occasionally, I can count on adrenaline and my nifty "bag of tricks" (read: medications) to sustain a semblance of normalcy for a short amount of days.  But, again, I must usually repay these times with days spent in bed using all of my tokens to just wander to the kitchen for sustenance and a fresh ice pack, making a pit stop in the bathroom on my stumble back to bed.

The good news is I have a really comfy bed.  I have discovered a good ice pack that molds to my head and stays cold a long while. I have a fan in my room that blocks out noise from the outside.  And unlike some people that have Chronic Daily Migraine, I can usually read unless I am very, very miserable.  And most of the time looking at the computer doesn't bother me too much.  It's the pesky little things like thinking and retaining thoughts that are the hindrance to enjoyable reading while mildly miserable.  Which might account for the strange habit I have of checking books out at the library, reading them halfway through, and then coming to the strange realization that I may have actually read the book once before.  (Or twice--who knows?!)  

So, the game plan for now is living with a chronic illness.  Lots of people do it, and many do it well.  That's my plan.  Just because I have only a very few "tokens" of energy compared to many others, doesn't mean I can't be a positive, cheerful person.  It doesn't mean I can't accomplish anything, it means I will accomplish different things.  And, I am sure that there are still many who will wonder why they haven't figured out what is causing my Headache (they did: Chronic Daily Headache), and wonder why I don't do anything to try to get rid of them (I have: name a medication, I've probably taken it) (I do: see six or so paragraphs above) or even wonder why just a headache makes me unable to function the way they do (chances are they've never had a headache, and certainly not a Headache that has been non-stop for five years).  But, that's okay.  I know this is what I need to be doing right now. (In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:6)

Where does this put me compared to last year at this time?  Well, I feel the same as far as the Headache goes, but I am a bit better at dealing with the pain.  Or at least managing my time and energy despite the pain.  I'm not perfect at it, and certainly many of you have seen me more than once not being cheerful and positive. But, I'm getting better.  I feel miserable most of the time, but I can (most of the time) feel at peace with that.   I certainly have many friends and family members that encourage me and lift me up.  We have generous people that bring us meals.  We have kind people that offer relief in many other ways.  And a God that offers comfort, guidance, peace and assurance.  What more could I need?

Finally, brethren, farewell. Be perfect, be of good comfort, be of one mind, live in peace; and the God of love and peace shall be with you. 2 Cor. 13:11

I can do all things through Christ which strengtheneth me. Philipians 4:13