Isn't it amazing that we don't always know just how bad we have been feeling until we feel better? It seems to be my experience,that only until after a round of IV Steroids I can then realize the severity of my symptoms. I continue to plug along with my life and make small adjustments as needed. I don't always recognize right away that my short temper, or slower pace is more than anything that just normal daily fatigue. I tell myself the brain fog I experience when trying to read simple emails, or trying to decide what to make for dinner is just me getting older.
When I finally break down and go for the infusions relief is not immediate. I actually end up feeling worse for several days following my last infusion. Crying, swollen glands,and severe mood swings are inevitable after an infusion of steroids for me. When I finally start to come down from the steroids and my system evens out, I am always surprised how good I feel.
I am not suggesting IV steroids for everyone. We all need to find what is right for us. IV steroids work for me so I am willing to put up with side effects a couple times a year.
If you do go the infusion route keep these things in mind:
You may not feel better right away, in fact you may feel a bit worse.
Swollen glands are painful, but normal. I take ibuprofen to help.
You will not make good decisions, so don't try. You may think completely reorganizing all the kitchen cabinets is a fantastic idea, but it is not. You will just end up on the floor crying, surround by every dish and food product you own. Really.
Water. Water. Water. Drink it, bath in it, listen to it trickle to sooth you.
Drink enough water to keep you peeing and it will help alleviate some of the bloating you may experience
My skin tends to be very painful to the touch and a nice cool bath is very soothing.
Just the sound of water soothes my mind. Use the sound in conjunction with meditation.
I try to find a quiet place to just hole up in for a day or so. Everything sounds louder to me. I stay away from TV.
When you do start feeling better be careful not to overdo, but try to get back to enjoying your life.
This disease steals much from us, but we can take a little back every time we decide to live the best life we can.