Not Being Able to Go
There comes a time when those of us with chronic illnesses have to actually accept what is going on with our bodies, mind, and reality. We can put it off as long as we can but there comes a time when it will slap you in the face and you will have to deal with it. I’ve been diagnosed since 2012 and I have dealt with parts of the chronic illnesses I have but there are parts that I have pushed to the back and not wanted to deal with or even acknowledge. Well, all that changed this week, I am now having to deal with something I pushed very very far in the back of the brain.
I have a port that was placed back in 2023 and that was my realization that I can no longer do what I used to. Up until that point I allowed myself to have a little bit of denial that I could still function as I always have done. I would force myself to go out, to do things for days on end and then crash for a week and think that it was okay and that would be my new normal. I’d push myself to keep up with the lifestyle I used lead and pretend I was okay with whatever the outcome was. It was a hard to live like that but I was determined to push through because I didn’t want anyone to feel bad or sorry for me and I still wanted to be included.
I see things that I used to do like go to concerts, go on trips, hang out for hours with friends, go to the movies, etc., etc., etc. My heart breaks when I see these things come up in my email, on social media, hear it from friends, listen to it on the radio, however I come across it I realize I used to do those things and now I don’t. I also have the bad ideation of thinking and sometimes feeling like I am still a lot younger than I truly am. That’s a thing with my chronic illnesses there is something that happens within my brain where back holes develop and lesions form in parts of my brain that affect different parts of how I think and function so that’s where the feeling younger comes in, or so I’m told my doctors.
Now that I have my port, I can longer do most of what I used to because the port can’t be contaminated in any way shape or form. With a port even if it is not accessed with the needle, it still has a hole there that leads to the blood stream and nothing can get into it. You’re told when you get a port that you can no longer get in a lake, river, ocean, sweat too much, get chlorine near it, and an entire host of other things. It even makes it hard to bathe, wash your hair, or just do daily things. There are ways to cover the port to try and keep it clean and dry but it is such a hassle to do that it is not even worth it for me honestly. I do cover for bathing and those type of things, but nothing else. I also know that it can bother people to see it out in the public and I hate being stared at for that reason, other reasons sure but not because of a medical reason.
I’ve got to run fluids at least three times a week so I stay accessed all the time and even if I wanted some time off, I still have to do so much to keep the port access covered that it is so time consuming. If I wanted to do anything I need to take at least 30 minutes to prepare. If I wanted to go on a trip, I’d still have to take all my supplies to run the fluids and take my medicine that is delivered through the port. That is just an entire hassle in and of itself. Dealing with a chronic illness is hard enough but add in a medical device such as a port makes it that much harder and life that much more complicated.
All this came up because I have had this weird desire to want to go to the beach. I say weird because since I have been diagnosed, I’ve not been able to get in the sun because of my medicine and what the sun does to my skin. That is another issue that I can talk about later because there is a lot that happens with chronic illnesses, medicine and the environment. Again, I’ve been wanting to go to the beach, even knowing that I can’t and it wouldn’t be worth it but that hasn’t stopped the idea of creeping in. I’ve had to come to the realization that my life has truly changed and that I truly can’t do what I used to do and that is such a very hard thing for me. Even those days I pushed past my limits; did things I knew I shouldn’t really do have now come to an end and I’ve had to realize that my life has absolutely changed whether I ever wanted it to or not. I now live through others, their social media posts, stories, and the sorts. I still feel the need (cause my rebellious side is still raging thanks to my black holes) to say chuck it all and do what I’m not supposed to, unhook, and run off to the beach to a concert in the middle of a rainstorm but knowing it could possibly kill me is stopping me and I’m to the point I can behave like an adult and make mature decisions when I have to.