Yesterday I had a no good, very bad day.

When you have a chronic illness, you get used to a sort of baseline of pain.  It’s like you figure out what your “normal” state is.  This normal state is your typical level of swelling and fatigue; your typical level of joint pain and stiffness, of general body pain; your typical level of inability.  People without chronic illness may not understand this, or may only think they do, but those of us who have some wonderful disease, know what this means.

Yesterday wasn’t normal.  I think yesterday may have actually been my first really bad day since I began the many medications I am taking.  Oh, I have had some bad days, some slightly worse than normal days.   But I had not had a very bad day yet.

I would like to never have another, honestly.

If I list today all the things that made yesterday suck, I don’t think it would effectively capture it, mostly because it wasn’t just the things that happened, it was the accumulation of those things that were too much.  I could barely move; I was exhausted; my swelling was much worse than normal; my mystery abdominal pain returned; my pain was so bad I was nauseous.  Add in: everyone in the house was upset or tense, doubling my tension; I burnt myself and cut myself while helping cook dinner; I had a total sobbing breakdown at one point because it was all too much.  It really was all too much.

Is this what I have to look forward to: normal bad days broken up by the really horrible ones?  I really hope not.

I can hearing this piece of a song in a head.  I think it’s from (of all things) the old Rudolph cartoon, tho it may be another of those badly animated Christmas specials.  The characters are singing “You put one foot in front of the other.”  And that’s what I have to do, even if those feet are slow and swollen.  Put one in front of the other and hope for the best.  After all, they can’t all be very bad day days.

It’s the little things, taken together, that add up to a whole different life.  Looking at my day there are so many little things that are different, so many little things that I have to do differently, because of my illnesses.  So many little ways I must be different.

When I wake up in the morning, the first thing I do, sometimes before I open my eyes, is move my fingers and toes.  I am checking to see how stiff and swollen they are.  After that, I take a few minutes, giving myself a mental pep-talk.

After I get up, I go into the kitchen to get myself breakfast right away.  I can’t take half of my meds until I eat, so hungry or not (usually not), I need to eat.  I have yet to find a breakfast food I consistently enjoy.  Mostly I resent breakfast.

At breakfast, I take 8 1/2 pills.

On Friday mornings, I add in the need to refill my pill container.  I can no longer trust myself to remember which meds I have taken each day, so I have a weekly pill holder that is divided into four slots each day.  So Friday morning,  I fill all the slots with the appropriate pills.  Today I realized my medication list wasn’t up-to-date so I updated it and reprinted the list.

After breakfast I chill.  I wait for my body to warm up.  That’s how I like to think of it, like a car that needs to be warmed up before it can go anywhere without alot of noise and resistance.  So I sit and warm up.  Then I take kids to school.  In my pajamas.  I realize this is bad.  I realize I should brush my hair and get dressed.  But I just can’t do it.

When I get home from that, I warm up some more.  I also pace my house as “exercise” so my back can get loosened up.  Somewhere between 9-10, I do my back stretches on the living room floor.

My day is typically split in parts: pacing house, resting, stretching.  Usually somewhere around lunch I find motivation for a shower.  It is generally an hour after my shower before I find additional motivation to dry my hair.  The last few weeks, drying my hair is an adventure: I am waiting to see if my hair starts to fall out.  So far, no more than usual.

I pick up oldest from school at 2:30.  This is also an adventure.  Driving is difficult, painful.  Nerve-wracking.  Somehow it seems that there are too many things happening.  I get over-stimulated.  I forget which gear I should be in sometimes.  I have to really focus on what I am doing.  I find myself excessively speeding without realizing it.

I generally don’t do the dishes- my one consistent household chore- until around four.  Most days I do okay with this, and for sure my hands love the hot water, but there are days that I can’t seem to do a good job.  Those days Bill and Riley point out the still-dirty dishes.  Those days I feel deeply ashamed that I am no longer capable of that simple task.

Some days I make dinner.  Some days I don’t mess up dinner.  Those are the good days.

At dinner, I take another six pills.  Except Wednesday.  Wednesday I take six at dinner and four more a couple hours later.

Most days, somewhere among my little bit of driving or my rare errand, I have to take pain medication.  The prescription kind.  No more tylenol for me!  No sir.  I was really bothered by this at first and put it off as long as possible, until the pain was debilitating.  Then I realized that was dumb.  If I can take medication when the pain first starts, then I can head it off.  So now, I am a more frequent user of Tramadol.  Life is easier that way.

Some other little things that are different about my days these days:

I spend a lot of time thinking about my health, my body, my symptoms, my medications, etc. Every new pain must be analyzed: is it fibro? RA? A new things altogether?

I move my toes and fingers deliberately, checking for new problems, checking to make sure they still move

I am constantly aware of how much pain I am in, of what my day needs to look like based on that pain

I try to wear a bra as rarely as possible, because they are just too uncomfortable

I wear long sleeves, and sometimes a sweater too, almost always even though it is around 70 in my house, and sometimes outside as well.  I am just cold all the time.

I am foggy in the brain.  Forgetful. I use the wrong words for things.  I can’t remember what I am doing, where I put things five seconds earlier.  Unfortunately, I am not foggy about being foggy.  I always know that I am foggy, that I am forgetful.  That my brain no longer operates the way it should.

It is all the little things that add up together to exhaust me, to make me sad and mad and frustrated.  These things will become routine soon; these things will no longer seem extraordinary to me soon, but will be part of the new normal.  Until then, it is all the little things that constantly remind me of the life I lost, and the new one I must get used to, so I can move on. Accept.  Thrive.  Until then, I will take it one little thing at a time.

First dose of MTX just made me really, really tired.  Like in my bones exhausted.  I want to go to bed for days and days.  Of course, my back pain gets worse if I am in bed too long, so I can’t.

But all in all, I guess the first dose went well.  Looking forward to getting to the point when it is actually doing something.  But we’ve got some weeks left before that happens.

Mostly I am both tired and absolutely pissed off.  Maybe some depressed in there, too.

I am bored being home all day alone.  I can’t go many places without pain or fatigue being too much.  I can’t knit.  I can’t type for long.  I can’t sit for long.  I have being reading a lot, which I enjoy, but there is only so much of that you can do.  I want to be able to go back to work.  I want to be useful again.

Valuable.

I have been doing reading on blogs and books, etc about chronic pain and how you will find the value in yourself but it is hard to get there.  How do you find your value in society, in your community, when you can do so little?  When you can no longer contribute in the ways you could in the past?  When your offers to contribute what little you have are rejected?

I just don’t know.  My best friend and I were talking the other day about this, and she said, it’s hard to think that someone would want to be with you because you know that you don’t want to be with you.  You are sick of yourself.  Why would anyone else choose to stay?  I get that.  I am sick of my body, of the pain and the limitations.  I am sick of the fatigue that is so exhausting in itself.  Who knew that being fatigued was in itself exhausting? I am sick of worrying.  I am sick of wondering if I will ever go back to work, if I will ever be able to drive much, if I will ever be able to do the dishes without wanting a goddamn nap.  I am sick of being sick.  I am sick of waiting for the people around me to walk away, to reject me because I can no longer do the things I once could.  I am so lucky to have a partner who is sticking around.  Who is supporting me in every way, but it is so hard to believe that will last when you know that you are broken, will always be broken.

How can I find value in all of that?  In myself?  I know who I was before: smart and capable, the go to person.  The one who could get things done.  The reliable, independent one.  I am no longer most of those things.  And the parts that are left- well what can I do with them?  When you define yourself by the things you can do at work and at home, when you define yourself by those roles, who do you become when your body says- no.  You can no longer do those things.  What do you do? What do you do when no one seems to want the little bit you can offer?

So yeah.  I am tired.  And pissed off.  Depressed.  Wishing I could go to bed for days and days. But they say, this is normal.  This feeling useless and angry.  This is part of the process toward acceptance.  I am grieving for the person I used to be.  I know it is normal to feel this way, but damn do I wish I could see the light at the end of the tunnel.  I wish I knew what will happen at the other end of this.  I wish I could be sure that even though my body is broken, that my true self will weather okay.