Chronic Diva

I have a secret and I am going to share it with you. I don’t like to “get out” very much. In fact, if I was going to be truthful on the subject, it would be closer to never. It’s a complicated issue and one only exacerbated by my chronic illness. I have a bit of social anxiety and coupled with the unpredictability of my illness I decided some time ago I was better off at home. It made it easier I was never a social butterfly, but it still often puts a damper on what few plans we may make. The majority of our fun revolves around our home. We play a lot of games and watch a ton of movies and I’ve been lucky that despite our four girls growing up, they enjoy spending a lot of their free time at home. It has kept any loneliness I might feel at bay.

The brief time I was working was difficult even with the minimal things I had going on in my health because I could not be there a 100% of the time. As things progressed, and my health deteriorated further, the sick calls became more frequent and my anxiety sky rocketed because I have a very strong work ethic and while I knew there was no way I could go in and be productive, I wanted to be. I hated having to call and tell my boss I was sick. It left me with a feeling of self-loathing and feelings of being inferior and unworthy. Let’s tack on to that a wish that I had simply been created normal with the ability to do things like everyone else.

Sometimes, I feel that I am lucky because I have imposed this self-hermitdom protecting myself from these difficulties and then things come up like holidays, when we visit family out of state and I find myself panicking in July because I am wondering: Can I make the trip? Once there, what happens if I flare? There’s a dozen of things going on with me that can truly sabotage a trip and I cannot predict nor plan so precisely, that I can make sure none of them happen. My extended family is amazing, but they are not here enough to see how bad things can truly get. Am I going to inconvenience people because I suddenly have something going on with me that prevents me from participating fully in certain plans? And this is when I think that maybe, self-hermitdom has handicapped my ability to deal with these social situations.

I am sure I am not the only one who loathes the idea of inconveniencing people. More so, I am certain I am not the only one who panics at the idea of getting sick outside their home. Whether it is at a friend’s house, restaurant, or on a family trip, flares are real and can seriously put a strain on everyone’s attempt at relaxation or fun. So how do you do it? Do you try to prepare for anything that might come up? And I realize that how much you can prepare is dependent on how much time you will be away from your house and maybe how much you can bring with you. But I would really love to know, because I am seriously worrying about our trip in the fall and the 999 ways things can go horribly wrong. I am reaching out to my spoonie warriors, I know you can hear me- shoot me some ideas that might make this trip go a little more smoothly or at least slightly less panicky!