One was angry and frustrated. Lashing out at people, the people bitching and moaning over stupid things, like poor me, I can't get my pull ups, poor me, I can't work out because I hurt myself. Guess what, I feel like screaming, you CAN do the physical things I only dream about doing now. You WILL heal. I never will ever so I don't want to hear your petty concerns when I am struggling to do regular living things.
And don't get me started on the people who felt the need to tell me how lucky I am it isn't worse and nonsensical bullshit like that. Yeah, tell me I am lucky when walking requires every ounce of concentration and energy I have, or how I am not driving because I am so dizzy. I know these people mean well right? I have to remind myself to think of all of the wonderful friends who reach out to me almost every day, just to check in, say hi, offer to give me a ride if I need one, help with my mundane life stuff if I need it. In the same breath I need to get past the people who I considered friends near and dear to me that have been pretty much absent during all of this. The people who went absolutely ghost. I try to explain to myself that we all have lives and are busy, or this sort of thing is difficult to deal with for some people, but I don't feel like having to make excuses or being understanding right now. I need the kindness and compassion so many others have offered. I have no desire to soothe someone else during my own issues.
But still I have a need to release my feelings, to clear my head, maybe a post that needs to get out. Some kind of positive way to let myself move forward and deal with the hand I have been dealt.
Can I though? My world is spinning wildly out of control.
More accurately? I have become an illness.
I look in the mirror and furiously hunt to see someone familiar, someone I used to know. How do I move past this? How do I move past the questions I face in my mind every morning?
I think longingly of when I would looking forward to the day. Spending time in the morning drinking coffee with my amazing husband, planning how our days would go. We'd talk about the workouts we were going to do, what we had to do at work. It was how I loved to start my day.
Now I wake up because my bladder is screaming at me to move and get out of bed. The urgency is something I go through easily 30 times a day now. Me getting up and actually getting out of bed? Well that brings up a whole host of what ifs that are pretty unnerving, the first being what if I can't walk? Then what if I can't actually pee? Or what if the crushing dizziness decides to come back today? What if the Aubagio keeps making my hair keep fall out like this? I could continue, but you get the idea.
After that whole thought process the rest of my thinking gets pretty skewed. I find any positive outlook I am supposed to have difficult to hold on to. I am locked in a mental battle of I am bigger than this disease and no, you really aren't. Even after three days of infusions, almost 20 days of steroids and being on a disease modifying drug that has insanely unsavory side effects, you still look like a drunk when you walk. As my daughter and her boyfriend helped me walk on the beach a week or so ago, I said I am getting a t-shirt made that says, "I'm not drunk, I have MS" so people will stop staring at me. This is my life now, I just want to peel out of my skin and hopefully leave MS with the shedded skin. That underneath it all is life as I wish it could be. I feel so betrayed by my body. I am not asking for much, I just want some kind of normal that everyone takes for granted.
That's the worst part for me I think. Trying to do something as simple as walking on the beach or even walking to the ladies room while we are out without looking like I am doing a bad impersonation of Captain Jack Sparrow, or needing a personal escort, without the gaping mouths and stares. It all gets a little discouraging. The whole positive mental attitude, the whole I am bigger than this kind of flies out the window. I become self conscious, I try to act like I don't see it, but I do. That it doesn't bother me, but it does.
I want to be able to run into the grocery store and pick up a gallon of milk and run out without having to hold on to a shopping cart for dear life. Without walking so slow that there are snails and turtles feeling sorry for me as they lap me. Without it taking forever to do something that used to take me 10 minutes max.
Yesterday was my daughter Erin's 18th birthday. I wanted to make her a birthday brunch she wouldn't forget, because breakfast foods are her most favorite things ever. I knew I needed an early start, I got started by 8:30. Brad came in and helped me about half way through, and we were done around 11. I was grateful for the help because honestly? I couldn't do it alone, I was getting exhausted from the effort. We enjoyed an awesome brunch together, cleaned up, and I needed a nap. I was so wiped from something that simple, that once upon a time I could do by myself, all burners of my stove going at the same time, no problem. Not anymore. After my nap I came downstairs and started making her birthday cake, and dinner. The cake had to be gluten free, so I made it from scratch, and chicken alfredo was easy enough, but by the time I was done with the next round of cooking I needed to sit. As a matter of fact I had to sit through the whole meal making process, I was thankful our stools were tall enough for me to be able to sit and cook at the same time.
It was gratifying with how she thanked me, she knows how hard any amount of standing is for me, any amount of physical anything can be for me. But cooking for my family's birthdays, making their cake, an amazing brunch and favorite dinner is something I have always done, and not something I am prepared to stop doing no matter how hard it is on me. I'm not ready to wave the white flag on this activity yet. Still it made me sad when I thought of how taxing it was. When my daughter gave me a hug and kiss and thanked me for the millionth time saying how much she truly appreciated it, I answered back, "I may not be able to do everything like I used to, but I will always be able to cook for the people I love.
So maybe that's how I develop the positive attitude I need for every day. Look for and celebrate the things that I can still do. Not take for granted things like being able to see and try to keep a grateful heart for those things. Be glad that I am blessed with so many people who will just sit and hold my hand and listen, whether it be in person or virtually, that constantly let me know that they care. Be grateful that I have the family and husband that I do. I cannot imagine how hard all of this is on them. How hard it is to see me struggle physically or mentally every day. I cannot imagine how hard it would be every day for me to not have their love and support. I think more than for me, but for them I owe them my best effort to make every day the best it can be. So maybe that will be my plan. My survival guide. I need to do something because this mental tennis match I play every day is getting old and quite frankly pissing me off. New strategy, new game plan.
I will let you know how it all works out.
Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant ~ Horace
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