You know what the hardest part is? Not being able to talk to anyone, not a soul. Not just about what I have, but about how I feel, really. Which is as unpredictable as my symptoms. I'm angry, stressed, frustrated, challenged, tired, restless, and dear Lord what to do if I'm feeling happy?! The small doses of actual happy WITH a good day actually throws me off. Do I allow myself this day, do I do whatever my body gives me permission to do, or do I hold myself back knowing what the cost is in enjoying this seemingly limitless day. You see, feeling good today no matter how careful I can attempt to be, comes with punishment the next day or days or if you're extra happy, weeks. It took me one week to recover from a root canal using gas. ONE WEEK.
How am I suppose to express to people in my life how I feel, and then if I do, after they awkwardly listen and their silence or discerned look shows me how off putting my words were, now I need to make THEM feel better? The other end of this ordeal is that I don't even know how to verbalize what I'm feeling. When you have a chronic illness or a chronic pain something happens inside you that silences all of the words you have. You become this pent up person with so much going on inside and seemingly nothing going on outside. You'll find an ironic pain chart that shows "normal" pain scales to chronic pain scales, the normal shows mixed emotions on the faces while the chronic one shows all smiles from 1-10.
People leave. They effortlessly slip farther and farther away from my everyday life because occasionally bits of it put them off. Meanwhile my efforts and love and support remain strong across the board. They need me, I suck it up and I'm there, truth is even in the casual events and yes sometimes important ones, that I cancel, I'm still giving them 110% while I give myself 5%. Could they realize what they don't know how to handle is my LIFE. I'm forced to handle this every single day. They can't process my cancelling plans, or me going home early, or not eating, or needing to sit, or not tolerating noise, strong smells, or bright lights. They can't understand or they won't? Because it doesn't fit into to their way of life. Well, yours doesn't fit into mine but damn it I've loved you enough to push myself to pure sickness to know you.
After having so many years living a life of obstacles and doctors and tests, I've been able to listen to others as well. I've been able to see that it doesn't take KNOWING or relating to someone's situation to have compassion. To be an active listener. To offer love and support.
I celebrate and support in what I don't understand of others and their journeys, I don't shy away or leave them because our lives are different. I can't run a tough mudder but that doesn't mean I won't sit at the finish line cheering, or the very least ask about it, cheer on training, and do whatever physically or emotionally to support what I can. Funny enough, they always seem to know they can text me day or night and they'll receive exactly what they needed emotionally.
I have come to know that it's simply a choice of if they want to be apart of your life or not. Too often love has limits and those limits are in friendships more so than family. Your friends won't see that their absence is another pain in your life. They won't read between the lines that "I'm fine" means I'm tired and I quit and I hurt. They won't hear "I can't today" and wonder if it means you're secretly consumed with exhaustion or sadness. They won't have you on their mind tomorrow to see how you feel, or a week from now if your flare lasts a long freaking time.
People today are consumed with the "high" of life. They are worrying about posting the right picture to showcase the 2 perfect minutes of their own life and having tunnel vision to the next wonderful moment. It's uncomfortable to redirect their minds to your suffering. What I wish for them to realize is that what you express, is like them complaining about the jerk that hit their car. No one can fix it, there might be lingering drama, you're shaken up, you're all over the place, but you're OK. Just to listen, maybe ask questions, show concern, give some support, offer a ride or company to the garage, and tomorrow or so remember their event and follow up. Maybe laugh about something, plan something relaxing like a mellow movie in, or a massage, cry with you, throw things with you, or just come over to talk, daydream, online shop....whatever.
To me it's really simple, and it hurts. People show me that their time isn't well spent slowing down for my pace of life, sitting on a porch is too boring. That the difficulty in what I live isn't worth having in their life for an hour once a month. That the complexity of my life isn't worth working around to know me. That I'm not worth the extra.
If you're like me, living a challenging social life, find comfort in knowing that after the surface deep people are gone the people of substance arrive. The numbers are far fewer but the love is twice as deep. You won't feel less alone, but you'll be alone less often.
I'm not sure in even in support groups that you can ever truly be heard, because, well, there's so much you don't even know how to say. I think part of living with this or any illness is to know that you don't have to BE IT. You don't have to always talk about it or give into it or fight it. You just need to relearn how to exist regardless of it and realize you're built of more than it.
I'm not sure in even in support groups that you can ever truly be heard, because, well, there's so much you don't even know how to say. I think part of living with this or any illness is to know that you don't have to BE IT. You don't have to always talk about it or give into it or fight it. You just need to relearn how to exist regardless of it and realize you're built of more than it.
Pray my sweet friends. There is nothing unworthy of your cry to God. He wants to fulfill His promises to you, but you have to ask, and you have to have room to receive. If you're kicking and screaming fighting against what's naturally happening you'll just take longer to receive. If these people want to be in your life they will! Sometimes deep connections phase into sometimes connections, sometimes vice versa. Sometimes God just needs to clean house and show you that 1-He will be there and He will get you by and 2-YOU ARE STRONG you can do this. You haven't failed yet, because you are doing this and you're doing it the only way you know how, there's no guide to surviving this gracefully.
Don't allow yourself to circle this part of life. People come and go, and sometimes come back. Sometimes they can do for others what you've begged for. If you're like me, you have too much on your mind and heart to be burnt out by the lack of friends. I understand the craving and the sheer pain your heart feels desperately wanting those friends you love to scoop you up and love you. Your people will rebuild again, God always rebuilds. But sometimes the time right now is just for you.
