I begged for your peace..for a piece of It

You’re going to let your entire life pass you by in a blur of fears, anxieties and worries. You’ve lived most of your life with one foot in the grave always waiting for the other foot to fall.

You missed all the beauty life could have offered you. The beauty it did offer you but you were too scared to even notice.

Your family surrounded you and loved you and I don’t think you ever believed it. Fully. 

It was tainted with angry words and resentment. You let your fears, anxieties and worries take up room in your head instead of the laugher and love that was around you. 

You heard the cruel words of the world and at night, in the dark, the conflicts around you were the only things you replayed behind your eyes. 

You couldn’t listen when your child begged for help and needed your hand to keep her from drowning. You could only hear your own pain shouting so loudly in your ears.

You didn’t hear your child’s fear, anxieties and worry replacing what should have been their own happy thoughts. You only heard your own voice crying out in the dark. Again and again. 

Instead you obsessively worried about when you would die, frantically worrying about when the pain would suffocate you. 

And I still don’t know whether or not you were worrying about when and how it would end or if all along you were simply hoping for it. 

And in my hour of darkness…

I’m gearing up for my week before treatment. I’ll have to start taking prednisone. I started reading the booklets that come with the treatment. It’s all nicely organized in a binder with different booklets entitled stuff like: Before you start treatment and The weeks following treatment. Everything is laid out so carefully and precise. It goes over what to do to arrange for the treatment such as arranging rides and company and packing a bag of goodies. What to expect during the infusion is a big part of the booklet. It describes what the day will look like. I’ll arrive in the morning and there will 1-2 hours of IV corticosteroids to prepare me for the Lemtrada infusion. It describes it as sort of a helpful defence against any reactions during the infusions. Then it’s about 4 hours of the Lemtrada infusion in which I’ll be attached to the IV. And then approximately 1-2 hours of monitoring by the health care team. And then I can go home. It describes possible reactions and side effects like nausea or vomiting, rashes or hives. I read it aloud to Joey, pretending I was brave but we both know I was faking it. I read about being well rested, hydrated and to avoid germs during the first month. During which I’ll be off of work but it reminds me to not isolate myself but to be around friends and family for emotional support. I closed up the booklet and put the binder away. I felt like I couldn’t catch my breath, symptomatic of a panic attack coming on. I waved that fucker off for now. 

I’m well aware of the positive aspects of what this treatment might hold for me. And I know I’m lucky to have been approved to receive it. I also know that the alternative is to risk losing my vision in one or both eyes. And yet, I don’t dread this treatment any less. I’m scared of the prednisone and how it will affect my body.
I’m scared of being nervous before hand and how it will make my stomach sick. 

I’m scared of the night before the first infusion and the morning before I have to leave.

I’m scared of the first pin prick of the needle and watching the Lemtrada enter my body, foreign and unknown.

I’m scared of the discomfort I might face.

I’m scared of the nights during the treatment where Joey will have to worry that I’m okay and not experiencing any serious side effects.

I’m scared of what comes after the infusions have ended, the monthly blood work and staying home.

I’m scared that my absence will cause any unease for the kids in my class. 

I’m scared that the treatment won’t make a difference and I’ll still relapse.

And beyond all the fear, and more than anything else, I’m so fucking angry that I’m afraid of all of these things. I’m pissed off that my natural reaction isn’t to look at the positive or hopeful side.

And I hate that at the end of the day, when the lights are off and I’m disconnected from my friends or family or Joey, 

I’m left alone with the one constant in my life. That’s always been there. The anxiety. Now I can’t find any comfort in it. Like a cruel stranger that won’t leave you alone. 

I just wish i could expel it from my life, like a breath I’ve been holding. 

I’ve never wanted anything more. 

Turn your fears into curiosity 

Treatment starts the week of April 17th for 5 days. Finally. I’m excited and scared. I’m excited about the possibilities of this treatment. The possibility that after the treatment I may not have another relapse for awhile. Its weird my anxiety is telling me not to get my hopes up but I think I have to in order to get through this next hurdle. I need to see a light at the end of the tunnel. A friend suggested that after this is completed, I may even have a decent summer devoid of my usual summer-heat unpleasant MS symptoms. And I realized that I was ignoring the possibilities of so many good things because of my fear of all of the bad things that might happen. Now I’m not naive, I know that the 5 infusion days are going to be unpleasant (although family and friends will be there to support me and I cannot thank them enough) but it seems that the bad is all I focus on which is my downfall. I get caught up in the minutiae of every anxious thought. And I let those thoughts lead me astray and into often depressed territory. It’s the downward spiral.  I’m trying to change that. I want to turn my negative experiences into a positive strengthening one where I jump the hurdles, defeat the monsters, slay the dragons and come out of it stronger, braver and hopefully with a few less MS lesions. Who knows maybe I’ll be able to watch a movie or actually read a book again. I’m excited of what might be…

Wish me luck folks. I’ll be updating throughout the infusion process.