Monthly Archives: August 2014

“So with your metabolic disorder, you can’t really workout right?” Wrong.

My doctor has told me it is crucial to keep my body toned and in shape and that doing so will actually make it harder for those muscles to break down. It makes complete sense and I truly enjoy a good work out. However, it can be difficult, so soon after experiencing such intense muscle pain to jump back into straining those muscles. Despite my fear, I do try to go back to working out soon after I feel I’m ready. I take it slow at first, something like going for a long walk and then slowly notch up my regiment, getting back to the gym. It is one of my greatest fears that as I age my body will start to grow weak, accelerated by the effects of VLCAD. But instead of succumbing to my fear and letting it passively happen to me, I use the fear to propel me into action. That has been my (attempted) tagline to living with a chronic disorder-“don’t let it beat you, spend every day beating it!” I have found rather than a hindrance many days, it has given my life great purpose.
For most people “feeling the pain” is part of a good workout. For me, “feeling the pain” is not so simple and is usually an indicator of a larger problem. It has taken me many years to draw the line between “VLCAD sore” and “exercise sore.” Sometimes that line is nearly impossible to draw. Some days I just have to stop trying to draw the line and leave it to rest, hydration and a little faith that tomorrow will be a better, pain-free day. In my personal experience, “exercise sore” often feels more like the muscles are stretched and is often concentrated in my legs., arms or abs (depending on what kind of workout I did). “VLCAD sore” feels like an intense pressure on my muscles and includes pain in my neck, shoulders, back, and joints (often pain in my wrists or ankles can be an indicator). (Please note: This is my personal experience. These “symptoms” will not be the same for every person with VLCAD or another FOD. Please consult your doctor.) Separating these two type of pain have allowed me to realized that I can work out and that sometimes the pain I am feeling is “normal.” I feel like there is a misconception that people with VLCAD or other FODs cannot work out, ever. It is actually quite the opposite-we, even more so than others, need to make a conscious effort to keep our bodies in shape. However, it is a delicate balance and like many things in life, is all about moderation.
Just the other day I was at the doctor’s and my nurse asked “So with your metabolic disorder, you can’t really workout right?” A common question. “Oh ya” I respond, “I workout!” It may just be my personality, but when someone tells me I can’t do something I want to do it even more. There is nothing that makes me feel like I am kicking VLCAD’s butt more than exercising! #VLCADprobs

Fighting Fear

I just got over a flare-up, which is always draining, not only physically but emotionally. Only the necessities of life could be accomplished. I went to work and then came home, that was it. For me, as an action-oriented person, who loves going, going, going, that was miserable. Everything else in my life had to cease for a little while. I am slowly trying to work back into adding more to my daily routine again. Every time, it almost seems like starting from scratch. But every time, it gets a little easier. The only part that is not easy is the fear that is associated with doing too much, pushing myself a little too far and back into illness. But as other with chronic disorders know, you cannot let fear dictate your life. At a certain point, you just have to trust yourself and your own judgement. Trust the instincts that have gotten you this far. It is time to get back in the game. So to all my fellow VLCADers, and those suffering from other chronic disorders, be cautious, but be courageous! You’ve got this. #vlcadprobs

A Long Journey to Finding True Friends

So this weekend it happened again…. Every time I forget how much it hurts to have plans with people you care about, promises made, excitement level high, and then illness interrupts. I often go long bouts of time feeling great, living in a world of bliss, as if my illness does not exist. But as soon as that happens, as soon as  I forget for too long, it comes back and swiftly reminds me.

I had set up plans for one of my good friends from back home to come visit me at my new apartment.  I was going to show her around the city and just have a fun girls weekend. Friday night,  I get home from work and she arrives. We walk around the park and make some delicious pizza. All is going well. Right before I go to sleep, I start feeling off, but I brush it off and blame in on exhaustion. “It will all be better in the morning,” I think.

Well..unfortunately. It was not better in the morning, but only worse. A younger version of myself would have tried to push through it, walking miles through Boston and landing myself in the hospital. But  I am glad I have grown up enough and starting caring about my health enough to know I could not do that. That would only end in a greater heartbreak and much more serious consequences.

So it is 6 am on Saturday morning. I am sitting in my bathroom, trying not to wake my friend, crying, beating myself up over the fact that my friend had come all the way to Boston to see me and do some fun activities together, now due to the flare-up I was experiencing, it was not going to happen. I convinced myself she would be upset and disappointed. I know I was. Feelings of high school were looming- the  scary feeling that if I stood-up my friends up too many times, too many missed dances, birthday parties, or other important events, that I would slowly, but surely lose their friendship.

However, as I said, I have learned since then. And my feelings on that subject back then were always misled. Had I “lost” friendships? Maybe a slim few. But what I realized is those people that I “lost” were not really friends. I had gained many more friendships, true friendships. Being a true friend, I have learned, means being there for a person in their time of need, at their sometimes, lowest and darkest times. My true friends are the ones who in the moments of not only physical, but emotional pain, were there–to hand me a bottle of Gatorade, or make sure I had the notes from class. To ease that pain, not increase the grief.

I pulled myself together and walked into the bedroom where my friend was wide awake, clearly sensing something was wrong. I had to be strong and just explain to her that I did not feel well and that we could not go on our planned adventures. The first few words are always the hardest, whether it is your friends, your partner, your boss, etc. Hard conversations are never fun, but there is no avoiding them, they have to be had.

Well, even though this weekend did not turn out as expected (as many times VLCAD throws me a loop), I realized I had found a true friend. She was completely understanding. She asked if she could get me anything, staying around for a while, clearly concerned for my well-being. A true friend can sometimes feel like a hard thing to find, but  is truly a beautiful thing once it is found.

Despite chronic illnesses often interrupting our daily routines, aspirations, and relationships, I have found that they also provide a new-found respect for those important aspects in life. VLCAD has often been what has made me stop to those appreciate those things, when otherwise I probably would have just kept going.#vlcadprobs