I don’t trust my body – not even a little bit. I don’t know how I’m going to feel at any given moment. It’s unpredictable, to say the least.
Now, you might be thinking, “isn’t that the same for everyone?” To some extent yes, but not like this. I’m sick every single day to some degree. Maybe it will just be mild fatigue and a lingering headache, maybe my chest pain will get so bad I’ll end up in hospital, maybe my fatigue will leave me bed ridden… I have absolutely no idea.
I can’t make plans, not really. I accept plans with the usual “but it all depends on how I’m feeling on the day.” Because, let’s be real, I have NO idea if I’ll be able to make those plans or not. In fact, I’d say it’s more likely that I’ll have to cancel. Which fills me with no end of anxiety and guilt.
I love my friends, I love my family, I love my boyfriend. I WANT to spend time with them – and yet, my body doesn’t always let me. My Pilates instructor even took me off weekly lists, and assumes I’ll just turn up when I’m able.
This is frustrating for everyone, including myself. ESPECIALLY myself. I’ve seen friends distance themselves, stop inviting me anywhere, and just lost friends in general. They’re not bad people, they just didn’t understand and took my flakiness for not caring, and I don’t blame them one bit. I understand that chronic illnesses are hard for people to understand unless you’ve been through it, I really do. BUT, it doesn’t make it hurt any less.
This is the social battle every person with a chronic illness must go through at some stage. Do we go to that social event, knowing that we will pay for it tomorrow, and probably for days to come? How do we pick and choose which social engagements to go to each week, how can we spread them out? Why, oh why, can I not just have my body back so that I can go to ALL social engagements and not have to lose sleep over this petty shit anymore?
It really goes beyond that though. It becomes a deep fear to even leave the house. You start thinking about things no one else would. Like – how can I leave at any given moment if I need to without drawing attention? How far from home is this plan, if I get a migraine how long will it take me to rush home? If I go to that persons house, will my stomach rebel against me and leave me in a deeply embarrassing situation? Do I have all my medications, comfy clothing, water bottle? Then if we do end up going, it’s rare we even have fun because we’re too busy worrying or pushing through whatever symptoms we’re dealing with that day.
It is so damn EXHAUSTING!
And so, we stop planning anything. We stop even accepting plans that are further than a half hour drive from home, or any plans that might be over night. We simply stop making plans.
How lonely is that?