Saying “No” to invites from friends never gets easier. No matter how many times I’ve had to do it over the past four years, it still stings when I cannot go out, join friends for a brunch or dinner, attend a party, or even go for a walk in the neighborhood because my body won’t let me. It’s a great frustration of mine to mentally want to do so many things, to feel alive and want to participate in life, yet because of my heart and not feeling well I am a prisoner of my body. Most days I wake up and I shake this feeling. Most days I open my eyes and I immediately focus on positive things and getting better –but this past weekend I spent each day and night on my couch. Today it caught up with me in the form of an emotional meltdown. I have a serious case of cabin fever so I had to just get it all out here before the week starts. I want to start fresh and rid myself of this funk.
Because of my heart failure my social circle has definitely shrunk over the past four years. I was diagnosed at 25 and I quickly saw groups of friends fade away. Don’t get me wrong, I’m crazy lucky to have close friends and sisters and they take the time to understand what it is I deal with but this weekend was a rough one because everyone was off doing fun summer things. It is a lonely feeling. I often say that my greatest fear isn’t dying rather, not living. And that means watching life pass by without being able to truly live. On the days of flare ups of my illness before I even think of leaving the house I have to check many things; do I have this medicine and these vitamins, and this drink if my stomach starts up, or this medication, or how about these pills if I get nauseous, and maybe a change of clothes because when I have a pain flare up my skin hurts so bad I cannot wear pants that button. It is a direct offense to the person that I truly am… my spirit is one that just likes to FLY, to just get up and go, no planning, no thinking ahead… just LIVE. So to begin with this gets me angry and then I’m exhausted before I even leave my home! This happened today, and after this tiring ritual of trying to amp myself up to leave I thought of all the amazing food and fun drinks I would have to watch everyone eat and drink in front of me (all of which I cannot have). I just couldn’t do it today. Yes, I still struggle with my clean green diet… I’d be lying if I said otherwise. Especially during the summer; I would love to have a Sunday Funday and go day drinking for a long brunch with delicious summer foods.
After my meltdown I got on the couch and calmed down. When I was thinking rationally again I couldn’t believe how angry I allowed myself to get. Angry at things I have zero control over. I was totally worked up, a complete mess. It’s moments like these and days like today that I have to remind myself to flip the script. Stop with the gloomy tunnel vision and see the good and be grateful. And grateful I am … not only to be here, with my own heart still beating in my chest, but grateful for all the amazing things and wonderful people in my life. The things I can still enjoy. It seems to be human nature, when we are bit by the misery bug it’s so easy to name all the things that suck. But when I look at the big picture I know my sacrifices will pay off. I know they will because they have to. Because I want it so bad I can see it crystal clear. Because I want my life the way I want to live it. I want to run and dance and run some more, and have a cocktail if I want one, and say “Yes” to every invite!
And that’s what keeps me going after a wreck of a weekend. There are many ups and downs on this journey of mine. Lately I seem to have hit some weird anniversary where my coping skills are shaky and patience is thinner than ever BUT I am still hungry for life. That will never change. I ache for that “free” feeling –physical and mental.
Tomorrow’s a new day and I am going after what I want. That’s why I will take my medicine and my vitamins and my juices, and eat clean and green, and deal with the pain and discomfort. I’ll do whatever it takes. And I know that things will get better. I’m gonna fight for it.