Because temperatures were up and down like a (very active) yo-yo last week, I rounded out the weekend with a wicked head cold and a low grade fever.  Not something to be terribly worried about except that I had a date with Dr. M today for my quarterly “Oh yes, you have MS” appointment at Penn Neuroscience and I *really* did not want to have to go through the pain of rescheduling.

When we got up this morning, John diligently checked my temperature (99.7 last night at bedtime) and it was a reasonable 98.8 so I told him we were rolling the dice.  Healthcare in America is absolutely painful (and absurdly expensive) but I like it when I receive it and that was the plan for today.

It didn’t feel too early (and it actually wasn’t because medicine and MRI days are MUCH earlier drives into center city) but right now, as the clock reads 6.22p and  it’s still bright and sunny outside, I feel disconcerted and my body feels confused.  Light in the evening is great … except when it isn’t.  And it’s not so great when I try so hard to adhere to a sleep schedule and then all of a sudden we aren’t eating dinner until nearly 8p and then not to bed until 10p and suddenly eight hours becomes seven hours and …. Well my mind is snowballing and my body feels exhausted.

Usually we see Dr. M on a Friday, so my whole week feels off-kilter because today is Monday and Monday is a yoga day, not a doctor day.  And this Friday John leaves to go fishing for the weekend, so more things that aren’t routine.  I’m becoming an absolute curmudgeon in my old age about routine and rhythm and order.

Daylight savings and messing with time is utter madness.  I am NOT a fan.

Xox, g

One of the things that I’ve been trying (and mostly failing) to learn is the difference between what is good for me and what I *think* is good for me.

Case in point – it pains me to take my Apple Watch off if I haven’t hit my goals – not just my red green and blue rings but also my step count.  Tonight I am going to sleep short about 1500 steps.  Because what’s good for me (rest) trumps what my watch says (walk longer).  I know this because I am always learning the nuances of my disease and today – with its huge temperature changes – slayed me and my poor, lead weight legs.  I don’t need to push my body any further, I need to rest it.  But those steps will haunt me and I will try to make up for them the rest of the week.

Knowing and doing are two very different things.  Knowing tells me I shouldn’t eat gluten or dairy but  … when a Reuben sandwich presents itself, I have a hard time saying no.  Knowing says respect your body but doing says “Use it or lose it,”.  And with MS, that’s a true and highly likely possibility.

I’m going to go to sleep now and try to be gentle with myself this week as the temperatures bob back and forth between spring and mid-winter.  I am going to try.

Xox, g

It’s very hard to think about much else than the pain, fatigue and brain fog when I have a headache.  And because I get them so frequently, I have learned some coping mechanisms and ways to get through the days … but I have yet to figure out how to make their duration shorter (its usually a solid 48 hours or more) or how to lessen the pain.

I don’t want to talk about pain and headaches and exhaustion and MS every two or four weeks.  It’s boring and repetitive and really, how much more is there to say?  (Hint: Not much).  But when I’m in it, I’m in it.  And the past few days I’ve been really, really in it.  One of my worst headaches in awhile.  Unendurable pain (which of course, is endured because what is the alternative?), inability to sleep and a very effed up digestion due to pain meds and most foods making me want to vomit.  (Don’t worry, I never lose weight, much to my chagrin).  Lucy even went to stay with her Zia and Noni because I was unable to take care of her, and John has been gone taking care of his Dad every day since Saturday.

I want to sleep tonight, so very desperately that it’s hard to articulate.  I want to sleep and wake up tomorrow on the other side of the pain.  Able to think about other things, able to eat food other than toast.

Last summer I made an appointment with a neurologist about my headaches but then never went — determined to solve the problem on my own without strong drugs.  I think I’ve passed that now — I think I would take just about anything if it stopped the pain.  Which is a desperate place to be.

I promise to try not to talk about headaches next time I get one and I apologize that the past few days have been brief and a little loopy.

Xox, g

Life takes us on weird twists and turns.

I was thinking about that today as husband drove down to the hospital to be with his parents and I stayed home, exhausted beyond reasonable exhaustion.

I’ve had a couple days in the past when exhaustion has prevented me from essentially functioning as a human.  I’ve gotten better at recognizing it — I used to ‘push through’ but pushing through just comes back to bite me (usually in the form of a days long migraine).  Today I realized that everything I thought I was going to do wasn’t actually going to get done.  In fact, nothing was going to get done.  Not working out, not dinner with my Aunt & Dad, not showering (which takes an absurd amount of energy that I just did not have).

I used to feel painfully sorry for myself on days like today.  Angry at my disease, angry at my inability to do the things I believe I can easily do.   Recently I’ve stopped beating myself up.  I work hard to be as healthy as I can be.  Sometimes I have to take a beat.  Life is tough enough as it is, I don’t need to add to my woes by twisting myself in knots.

On the plus side, I watched “Marry Me.”  It wasn’t great (it kind of reminded me of “Notting Hill” but without as many quotable lines).  But I am a diehard Jennifer Lopez fan, and I have been for years.  She is my North Star for skincare and style and health.  And she looks phenomenal (as per usual).  Plus, who doesn’t love Owen Wilson’s quirky?

It might snow tonight, which is a plus and a minus.  Because I’m so tired, and John is gone, there’s a little stress about walking and if it gets icy or slick.  And I probably won’t get a chai in the morning.  But snow is snow and it soothes my soul.

My soul needs some soothing right about now.

Xox, g