This week I sat down to talk with my TMI specialist and she said something that moved me. "For the last few weeks you've felt like a tsunami of words and emotions. Usually I feel like we are in a dialogue but you've just hit me a full force coming right at me and I don't know how to process everything you're giving me."
I pondered what this means to people who have ILLNESS and live with it. I've been told various things about myself throughout my life when I get sick and have needs - ESPECIALLY if it brings up things about my personality OR the more difficult aspects of being ill. Some will visit or bring soup then get angry when I'm not instantly better or able to hang out with them. A couple of people throughout my life and call me an attention seeker or accused me of having Münchausen syndrome because autoimmune illnesses are invisible.
The worst part though is when my intimate relationships fall apart because I'm just not able to be there for them OR I'm not fun OR I really am the problem right now - that sucks. I've come to this sort of surrender that I'll be single for the rest of my life - because I'm sick. And that it's just easier that way. I know I'm lovable and a joy to be around when I'm healthy - but when I'm sick only a few people seem to be able to be around me and those people aren't the ones who WANT to share a romantic intimate relationship with me. Those things are prickly, and consuming, and take time and energy. Sick people are a shitty investment of all those things.
I'm not pretty when I have emotions. I DO hit people with the full force of a tsunami (for example, I won't cry to a child or someone going through illness, but I WILL cry to my therapist. I won't behave well for my doctor, but I will behave well for a class of students.) Forcing myself to "behave" and "pretend" is exhausting and sometimes excruciating. I often feel that there is NO SAFE PLACE to HAVE my emotions. There is no way to be graceful when I don't FEEL graceful. When everything in my life is a tsunami how does one sit like a buddha and smile? Answer? NO ONE BUT BUDDHA.
I vent. I cry. I lose my shit. Yes- I blog. That's what this is. But I try so hard not to do it except with people who CAN deal with it. And I try not to do it in "the wrong places."
My TMI specialist and I had a difference of opinion over my large network of connections. She herself is an introvert and she's healthy. She's never had to make a choice about washing her hair or going out to socialize. I have. And I understand those who do. I'm also an extravert. Which means that staying in or not getting to be around people makes me sad and makes me feel alone even when I'm feeling like visiting and being social.
Like most people she's taken ONE dose of prednisone and said it was awful. She's never had to live on high doses of it for an extended period and dealt with the resulting mood swings. On any given day I have to CHOOSE to get up, choose to live in pain, choose to live exhausted, and choose to find joy and gratitude. And I do. I do find meaning and joy because I WANT TO. At the same, I am human and I also recognize that I have often missed opportunity for intimacy and connection and vulnerability BECAUSE I am dealing with my own story.
Because of my life I've learned (and am trying to unlearn) that living with illness necessarily means living with LOSS and that people (especially younger people) don't like illness and get scared of it. I've learned that unless I have a wide network of people - often lose networks of many people to spread around - I won't have many people left. Perhaps it is a coping mechanism or perhaps it is because I have gotten used to being sick so I understand what it means when I cannot go out. But I know how to be passionate about something and commit to something yet only do it once a week or once a month. I also know how to love deeply yet entertain myself and sit alone. I also know that I pick up social media more when I cannot go out. I read more, perhaps I knit. If I want social interaction and miss it, I often use that time to catch up on the telephone.
That means that sometimes I keep a wide network of people as a safety net. So if people stop loving me I'll still have someone there. It means I've gotten used to losing my life again and again and picking up the pieces. And it means I'm used to dealing with a tsunami of moods and emotions that come with a side effect of medication I don't even want to be on and having a therapist poke at it. And me saying, "You know - maybe in a month or two when I'm off medication this won't be an issue. Can we check back then?" Why? Because I want to scream. I want to say, "I WANT TO SCRATCH OFF ALL MY SKIN AND MAKE THIS GO AWAY. I DON'T LIKE BEING WHO I AM WHEN I'M SICK. FUCK. FUCK. FUCK." But I dont. Why? Because I have found that it is useless. And I also recognize that pushing people way - or further away when I'm sick is useless. I like her - and just because she finds me difficult right now - well - SO DO I.
If I could, I'd put every relationship on hold when I'm on prednisone, and come back to them. I often think to myself - "I wonder if... " (I'd still be married or still have this friendship) and then I realize that I wouldn't BECAUSE they didn't go the extra mile for me either. And my ex-husband wasn't a good man for me (or for anyone at that time in his life - if he's possibly changed). It is harder to do living and connecting and intimacy when being sick throws a monkey wrench in the mix.
Yes- I have a tsumani of SHIT I didn't ask for hitting me right now. And if people love me they'll show up for it and deal with it along with me. And it sucks sometimes, but the beauty of it is that sometimes people stick around. The sadness of it is that sometimes you don't. And I'm sorry for every person in my life that I've lost - not because I'm too much or too loud or too me... but because I was too sick at the time to handle THEIR LIFE. And I'm sorry that illness is both invisible and overwhelming to everyone. My choices everyday are 1) get out of bed and live 2) don't.
I'm always sitting the fence on which one is better. Sometimes I laugh so much I'm positive living is the answer. But when I'm in the middle of a shit storm I didn't create and didn't ask for - AND LIFE STILL GOES ON around me - I'm not sure anymore. I do know it takes a while to get back on my feet.
There is no real point to this post except to say that I'm grateful for the large network of my connections. I'm grateful for people who have helped me be vulnerable and that I'm safe. And being sick or healthy isn't really easy if we are human. Being human means getting down there and DOING life. And I have often sat on the fence and made my mind up on a day to day basis. "Yes. I'm going to get out of bed and live today. It is a good day to live even though I'm not in the greatest place."
Some days I think that's all we can do. Some days that's the bravest thing any of us can do.