It's okay when it's not okay...

It's okay to cry.

When life throws punch after punch and then kicks you when you're down.  It's okay to cry about it. It's okay to feel fed up, and stressed out.  It's okay to not know if you have the power or the energy to go on.

It's okay to spend a day, or two, in bed, doing nothing, hiding from the world.

But then you get back up, you get help if you need it, you learn to be okay with the bad days, because you survived them.   I saw a meme recently that said "You have survived 100% of your worst days"  and it's true... it doesn't matter what you're battling, you have survived and it's amazing that you've done so.

John Underhay (PEI Curmudgeon Blog)  spoke at my university during mental health week and he said something along the lines of it being okay for depression to make you hide from the world for a couple days... but you can't let it go beyond that, and I've been thinking about that lately.

I've also been blaming the prednisone for all my crying (because it's responsible for most of my rage)... but I think maybe it's not entirely responsible for all the crying.  I think it makes the bad seem worse... but life is really fucked up right now, and full of uncertainty, and that in itself is enough to warrant some mini breakdowns... maybe not so much the crying pretty much all day that happened on Friday, but definitely the moments of feeling emotionally, physically and spiritually drained.  The moments of not knowing if I have the energy to go on, to fight. There are times when I don't want to fight... the pure exhaustion of it all.

Cognitive vs. Emotional.   Emotionally I feel like doing nothing, Cognitively I know I should do things that I enjoy... and if I can get my cognitive side to win the battle, afterwards I do feel a bit better emotionally.   I still can't trust my emotions.  It sucks.

Today I met with my dermatologist... I knew one of three things was going to happen:

-My liver enzymes would be good, and I could drop to a lower dose of prednisone (start to wean).
-Everything would just stay the same
-My liver enzymes would be horrible, and I would have to go on IV steroids.

I was hoping for the first one... I was *supposed* to start weaning after I got out of the hospital... but my body doesn't seem to be doing this whole healing thing right, so I haven't weaned.

It's been a month.

A month on high doses of steroids.   A month of my body being "in shock", a month of this stupid DRESS syndrome (well... more than a month, they just didn't know it at that time).

The second one won... My liver enzymes are high, but not too high.  High enough that they can't risk dropping my dose, for fear that I might flare up again... not high enough that I have to go on IV steroids.   They're a little bit higher than they were when I was let out of the hospital... A MONTH AGO (They've gone way up, and down, and back up.. and down since then.)

So now I remain stagnant.  Nothing changes.  I have no idea when I'll begin to wean of the steroids... which is going to be something like a three month process... at the rate I'm going I have a feeling it will be longer.

It's really hard to see the light at the end of the tunnel when it keeps getting further away.

I met with my counsellor today too, and he is helping me realize that I can let the fear of the unknown overwhelm me, or I can acknowledge it, and make changes in my life that help me deal with it.

I keep telling myself there's nothing I can do except make sure I take care of myself.  It is actually making me realize how much more I actually need to take care of myself, my body, my mind, my spirit.   My body is busy fighting something that tried to kill me, and it has taken a few weeks for me to realize instead of trying to ignore that fact, I should treat my body like it's trying its best to survive and thrive... and it can't win if I'm treating it like crap.

It's okay to cry, to get mad about the situation... but it's important to realize that I have no control over the situation (hard for a Type A personality who is used to being in control), but I do have control over how I treat myself, and I can make things harder for my body, or I can try and make things easier.

Easier seems so hard though.