The Monster

I HATE prednisone.. I turn into a monster when I take it. My heart races, I can't sit still. I get this burst of energy and I know I shouldn't act upon it, but I do, and I make everyone else around me join me on the prednisone/monster ride.

 

A few days ago I couldn't walk.  For the last month I can count on my hand how many times I left the house because I had no energy or was too sick or in too much pain to even get dressed.

 

But today ...I had a CRAZY prednisone burst of energy...

 

 

I took down the Christmas tree, all the decorations, dusted,  did some laundry, changed and made my bed, put laundry away, and took a shower- before my body stopped.

 

That may be a "normal" day for most "normal" people. That would have been normal for me pre-illness,  but for me nowadays...that was crazy.

 

I KNEW I shouldn't be doing so much, but I felt like I just drank five Monster Energy Drinks!

(And yes, I DO know what that is like- I did that pre-illness around 7 years ago when I was working long hours and still wanted to have energy to mountain bike when I got home, then make dinner and clean the house. I advise NEVER, EVER, EVER do that!)

 

 

Most days getting dressed and showered is a chore.  I have to rest after I take a shower.

Then I have to rest after I get dressed.  It takes me an hour to unload the dishwasher most of the time because I have to rest in between putting things away due to exhaustion, feeling ill, muscle pain, etc.

 

Today my body was swollen and achy,  my heart was racing due to the meds, and my brain didn't care. I HAD to move. I was irritated that the house was dusty, the tree was taking up too much room, and if I didn't get it done...well there was no option. My brain was DEMANDING to get it done, while my body was like "dude, you're stupid and gonna pay for this tomorrow".

 

 

I was a MONSTER to my husband. Since I was working around the house, sweating, hoping not to pass out, and in pain, I of course got pissed because he was off doing his own thing and not helping.

 (yes, SMART MAN. I see that now that I'm calm)

 

 I think he saw my eyes glow red and long, sharp fangs protruding from my mouth as I was "talking" to him.

 

 The "monster" that comes out when I take prednisone is usually my clue that I can start reducing my prednisone, because my body feels like I'm on steroids....LOL. I laughed after I just said that in my head. It was funny because prednisone IS a steroid, just not the type I was referring to.

 

I have adrenal insufficiency due to long term prednisone use. 

 

I try my best to not have any extra stress in my life to avoid having to supplement my cortisol with prednisone, but that doesn't always work so well.

 

 

This last episode happened Christmas Eve. I guess my adrenaline may have been up due to the excitement of seeing my family, then add exhaustion form the long day, and then pain.

  ALL OF A SUDDEN MY BODY WANTED TO STOP WORKING.

 

It was horrible. I'm not sure what happened. I was getting tired as usual, I started feeling "drunk" (and I wasn't drinking), then it was becoming difficult to walk. My joints were stiffing up more than usual.  So of course, It was time to leave our family (although I did NOT want to go).

The short walk to the car felt like it took hours.

 

My entire body was stiffing up, every step to the car became harder and harder.

I had to concentrate to walk, and I was sobbing like a baby because I was in so much pain, and every step was like moving a concrete block.   I felt like I was turning to stone!

 

 

This happened to a lesser extent a week prior with my arms and hands, and I'm not sure if it's from adrenal insufficiency, or it could be from the Lupus. I don't think it's the sarcoidosis because others in the support group don't have these issues, but I just don't know. The doctors don't know.

But I DO know that just the overall stress from the pain made my body start crashing.

 

 

 With adrenal fatigue I usually get feverish, nauseated, sharp stomach pains, dizzy, I start blacking out, and sometimes pass out.

 

 I always carry prednisone in my purse for an emergency (as my doctor ordered me to do, since I'm determined NOT to take it every day of my life).  So I took the darned prednisone and felt better.

I usually take it for four days, then start tapering down as long as I don't start the symptoms again.

 

 

 When I was first diagnosed with Sarcoidosis, prednisone was the first medication I was given to reduce the swelling of the lymph nodes, and to help with swelling, skin rashes, breathing issues, and joint pain.

 I was on daily high doses of prednisone  for over 18 months until the side effects were more than I could bear. 

 

My moods were AWFUL. Some days I would swear like a sailor (and I don't like swearing). Everyone in the house would hide from me.

Then I would apologize and start sobbing because it was like my body was possessed and I felt out of control. 

 

I also started having vision problems then found out that the prednisone was causing pressure issues , and also gave me many cataracts in both of my eyes. 

 

That was when I wanted OFF the drug.

 

So, long story short, I tried and tried to wean off and my doctor had to keep bumping the dose back because my body would "crash" and I could not function.

It was a slow taper, and after six months, and monthly cortisol tests that showed adrenal insufficiency it was decided I had to continue to take a maintenance dose, especially with any little extra stress.

 

Well, it's almost 2 am.  I thought I was going to die around 8pm when my prednisone monster inside left me, and was hoping to fall asleep early today to recover,  but another side effect to this darned drug is insomnia.  I am so exhausted and hoping my brain will shut down soon. So I'm off to watch a documentary or read a boring book on my ipad in hopes of falling asleep within the next few hours.

 

I'm not looking forward to tomorrow. I will be lucky if I can walk, but at least I have nice clean sheets on my bed, and can relax on the couch tomorrow in an uncluttered living room with the tree put away. 

 

I must admit though, In some ways I like when my monster comes out. I feel accomplished. I get things done in one day that can otherwise take me a month or more,  but I sure wish it happened on days no one was around to see my crazy Jekyll / Hyde routine.

 

Good Night/ Morning! xo