It's ok to struggle

This chronic illness life is such a roller coaster ride. Not just for me, but for my husband too. One moment I'll feel I've hit homeostasis and I can work with all these symptoms and challenges. Then the next something new will come along, or something will get worse and I'm tossed into a sea of frustration once again. 

A lot of the time I really do feel like two people. One healthy and able bodied and the other sick, chronically ill and immobile. More and more I feel that one healthy side of me literally dying. My husband jokingly tells me "Don't you die on me"! And I always promise to "do my best". But it does feel like a long slow death of the "healthy me".

Turning into a mermaid

To me the "healthy me" is the one who didn't need to nap every single day, who didn't have to think about the accessibility of a place before I went somewhere. Who didn't have to measure what I could do during the day in spoons (energy) and not do a lot of what I really want to because I just can't. The healthy me could eat whatever, go for a walk, hike, run, take a bath, have an orgasm and other things that I just can't do now. She's dying and it feels like a serious loss.

Sometimes that loss feels like my heart will break and I will drown in my disability. Some nights it feels like I'll just stop breathing or never be able to walk again. Sometimes I think of taking a lot of pills or drinking a lot of booze to just get the pain to stop for a little while. But I never make those choices.

Instead I choose continue to fight and swim against this tide pulling me down. I come up for air, and gasp before going down again. Sometimes I get hopeful at a doctors visit or with a new medication and I feel like I have some new floaties to help keep me above water. 

What really saves me and always has is knowing my husband is right there with me. Holding me up. Keeping my head above water so I can continue to struggle and try to learn to go along with my symptoms. Rest, recover, heal, eat well, pull back, reach out. All of these things help. But that doesn't mean they're easy. 

SHE also helps a lot. "My little nap buddy". Pulling back on work has also been useful. This week I also decided to apply for State Disability. Despite pulling back on my work week and working from home one day a week I don't want to come to a point where I wake up one day and just can't do it at all. I'm trying to be ahead of these symptoms for once and not go under the next time a big wave hits.