Getting Through a Multiple Sclerosis Flare-Up
If it were not for relapses, multiple sclerosis (MS) would be nothing. We all experience them. We all have to find our own ways to cope. This is how I cope.
Day One
Denial, alcohol and tears can be a likely and easy first step for me when dealing with a new MS relapse. I will be traveling along merrily through my day, when suddenly my knee feels cold or I get a cramp in my ribs.
“No reason to worry," I tell myself. “It will probably go away soon enough. Besides, it’s the weekend. There is nothing I can do about it ‘til Monday. Now, where did I put that Malbec?"
Later in the evening, I will likely be found in front of my TV, watching Bridget Jones’s Diary, eating sushi from my favorite restaurant and pouring myself another glass of that bittersweet Malbec.
“Sure, my knee is freezing even though I am wrapped in a blanket. Yes, this is most likely disease progression," I mumble aloud. “It’s no big deal. I am a strong girl. It’s just a knee anyway, right? Pfft — I can TOTALLY deal with a cold knee forever. Just as long as this alcohol keeps me from wondering what else could go wrong."
That is when I might cry, just a little, and then zone into the movie hijinks of a woman who seems to feel just as lost an inept as I do at that very moment, and suddenly my world is not so bad.
Day Two
It is now a Monday morning. I am hungover from my self-absorption of the night before and I am drinking lots and lots of water.
The water helps for two reasons: it rehydrates after the alcohol, and the steroid treatments will begin soon and dehydration is a monster when you are taking steroids. I have been sent to the floor screaming in pain from leg cramps and I never want to experience that feeling again.
I call my neurologist first thing and he knows me well. He has a set protocol that I follow and I am scheduled to begin receiving my prednisone IV infusion later that day.
I talk with my husband and son and we schedule our next three days around my appointments.
I am a veteran at the infusion room. I know which veins are best for the nurse to use — I am what they call a “hard stick."
I bring lots of water and candy. The taste of the prednisone is disgusting and sugar is my friend in this scenario.
The prednisone treatments are the center of healing for me. I hate the side effects that come from them (they are often worse than the relapse itself), but I love knowing the relapse will be ending soon.
That soon, I can get on to the business of healing and back to my “normal" life.
Day Three
Another day where I find myself at the infusion suite. The nurse is always annoyed that I didn’t have them place a port into my arm to avoid extra needle sticks due to my tricky veins.
I always smile and reply, “You are a kind person and I respect what you are doing for me, but when I leave this place, I prefer to forget that I was ever here." They always quiet down after that.
Day Three
This is the middle day of the prednisone treatment. I am still drinking plenty of water and eating my candy, but the sinking sensation does begin to bleed in.
I begin to soak in the smells of the alcohol swabs, the feel of the elastic they wrap around my arm, my knowledge of where they keep the blood kit, the fact that I know where the good bathroom is.
The familiarity of it all soaks in. I was scared of needles when I was a young girl. Sitting in this chair, I realize that I barely notice when they have to dig around in my arms with the needles while they search for my veins.
I think about how I got to this place. I do get sad at times and that is alright.
Day Four
My last day of infusions is coupled with an MRI in the office downstairs. This is great because I am almost done and I have saved time by having back-to-back appointments.
This is tricky because I have been drinking so much water. The water is doing its job at keeping the cramping at bay and helping with the needles, but it’s going to be a problem when I am forced to be still in a magnetic tube for an hour.
“Will I need to pee?" I wonder to myself. “Yes, I will definitely have to pee. If I go right before, it might be tolerable. I just have to be sure that the nurse puts in a port today because I can’t have them searching for 40 minutes again this time. They were so annoyed when they had to stop the machine mid-scan just so I could go to the bathroom."
I think to myself, “I can’t wait till I am done with all of this and I can get back to pretending that I don’t have a disease."
Day Five
I am tired. I look in the mirror to see that my skin has broken out and my body is swollen from all of those lovely MS steroids. I don’t even look like me at all.
I have a headache. My vision gets blurry. I want to eat everything in the house. The steroids are even beginning to affect my mood.
This is my hardest day. All of my responsibilities are behind me. I have done everything I have to do to heal. My body and mind are always tired at this point and it is incredibly hard to see beauty in the world when I am feeling this way.
This day is the most important day for me to have the emotional support of the people who love me. It is essential that I let them care for me on this day.
Life gets terrifying, at this point, if I am alone. I have to recognize that this feeling will pass. Therefore, it is okay to lean on those I love a bit.
I don’t want to dump my problems onto them, but I have to realize these people want to love me. They want to care for me and show me affection.
It is okay to let them right now because my survival depends on allowing them in. It is important that I am open with them in letting them know how they can help.
Every Day After, Until the Next Time
This is where the healing begins. Every morning, another step. Every day, another feeling. Every evening, another night to sleep through.
Little by little, day by day, I find my path. Some scars remain, both physically and mentally. My body seems to heal more quickly than my soul.