All The Small Things …

I am not in my “writer mode” at the moment, but I thought this was an important thing to get down. As I mentioned in my last post, I have realized this year how incredibly “screwed up” I am beneath the surface. Spending so many years not even being able to count on your body and being on the verge of death or even just blindness more times than I could ever attempt to count (the blindness bit still hangs over my head as once Behcet’s goes systemic / into your eyes, you do stand at about a 20% chance of going blind; similarly, as far as infections go, I have spent the last 2 weeks on antibiotics for a cortisone shot into an arthritic knee that opened up and got infected – something which my physical therapist never saw happen before.) really alters your sense of “safety” because after so many repeated occurrences of near-death experiences and awful things your body does to itself, there is, necessarily, no feeling of safety at all.

With all of that said, what I have noticed recently is that even the smallest things throw me over the edge. This weekend, my printer of nearly 8 years decided it was going to die but not after I spent $60 on replacement ink cartridges. I had to buy a new printer (less than the ink cartridges, sadly) and it took me nearly 6 hours just to get it up and running and it still is not “officially” installed as per the 2, 2-sided map-sized instruction booklets that accompanied said printer. I have also been fighting with aforementioned infected knee as well as some extremely nasty phlebitis which is a problem in and of itself but one that is made worse by the thinning skin caused by 17+ years of high-dose steroids.

For those of you who don’t know me, I have something of a very “unhealthy” relationship with food. I told my mom last night that if I didn’t have to eat in order to live I might eat once a month or every other month because I simply do not enjoy it. I love to cook but not to eat. I think this stems from 2 main causes: 1. when I was young and growing up I cannot tell you how many people told me I was fat and the awful things people said and did to me (including “authoritative” people who shouldn’t have done what they did and they could very easily have been sued for doing what they did to me. I cannot talk about those incidents in detail quite yet.); because of this, I always had in my mind that I was this ugly, disgusting, fat child … until I was recently sent old photos by my family and looked at old photo albums realizing that I was very literally stick thin. and 2. when I was in school, I had such a massive workload that I would often forget to eat or simply not have the time to do so. There is a lot more discussion that could go on just in regard to that, but for now, my point is that today, after a very stressful weekend and feeling awful today physically, I felt hungry and rather than telling my body to shut up as I usually do, I actually went to get some salsa out of the fridge and I had a bag of unsalted bean chips that I was going to open. Of course, my hand gave out and the glass jar smashed on the ground leaving salsa everywhere including on a very expensive rug and in many crevices of my cupboards. Oh, I also forgot to mention I have a serious mouse problem which I 100% believe is due to the lazy slob coconut who lives below me (that’s another post in itself as well). It has negatively impacted the health of my cat who already has congenital heart issues and I am quite sure it is very dangerous to me being both immunosuppressed and having a primary immune deficiency. I had to use the last of my paper towels and countless disinfecting wipes to try to clean the mess up and there are still seeds and things that I cannot get out of the cabinets. Needless to say, I immediately lost my appetite and felt the very strong urge just to slit my throat (thankfully, I would never do such a thing – that’s not only a post but a book unto itself).

What I am getting at with all of this is that when I was younger I would have laughed at someone like me who got so upset at having a printer die and dumping a jar of salsa all over a mouse-infested kitchen. But now, with a long list of very traumatic events behind me (I don’t even know what they all are but I do know just writing that makes me weep … so yes, I am sitting here crying like a maniac while I am writing this), these seemingly “small problems” just throw me over the edge.

I am really hoping that just acknowledging the fact that this is happening to me is actually doing me some good, that it is actually healing very deeply hurt parts of myself. I don’t know because right now I just feel a lot of pain and a lot of sadness and it might sound stupid to be crying so badly over such trivial things but it all goes back to 1. nothing ever works out and 2. I cannot rely on my body even to open a jar of salsa. If you are a “normal, healthy” person, just imagine what that feels like. It really is awful. I honestly do not think I have cried as much as I have cried in the past few months in all the years before them … which is saying a lot.

I really am on a journey to get to the bottom of all of this and make it out not only alive but happier and better and healed on the other side. Right now I am not. Right now if certain people I once knew were even to try to talk to me I would tell them how they have destroyed their lives and I have absolutely no respect for them. I know that is awful. I think that is a big part of what I am going through at the moment – I both want to acknowledge the truth there is in what I am feeling (that is, if the “someone” to whom I am referring were to call or write, it would be completely honest for me to say “you gave up all of your dreams, you gave up where you wanted to be, you gave up your friends, you gave up your true love to have kids … and you ship them off to daycare all day anyway, so you gave up everything to be a part-time father.” But that’s not something you should really say to someone … it is not my business to get them to understand that if I had a life that was not ruled by disease, I would be doing EVERYTHING I HAD EVER WANTED TO DO. I have come to realize that I absolutely LOATHE the fact that people I see around me just sit on their asses and do nothing and have the gall to actually complain about their “problems.”

I really do not know if that was at all coherent. I am sure I am hungry but my body has shut down again so I am sure I won’t eat for a long time again. I am very sad again. I am slowly starting to work toward the things that I WANT TO DO so that I can turn around and look at the people who have wasted EVERYTHING and not feel angry but fortunate that I didn’t become “that.” I am not there yet. And I am realizing more and more every day how bloody difficult it is to get there given everything I have been through.

I hope you are all having a slightly better day than I am – that is, unless you are crying and letting some of that poison out of your body and mind as well. It is INCREDIBLY DIFFICULT and I think necessarily, those of us with severe chronic illness that has kept us out of “society” for years and years and years NECESSARILY HAVE CPTSD. If that is something any of you would like to talk about, I would love to talk with you as well. I hope you are all staying safe and are having a happy and healthy day wherever you are in the world.

My heart is always with you.

❤ Always, Beth