** disclaimer: I have updated my post to hopefully more accurately get my message I wanted to across. Remember everyone is different and how I handle things I understand is not going to be the same for everyone else 🙂
I have decided to take a break from my blog and myself really, to try and figure out the best way to cope with things.
First off, I want to say that you are all such wonderful people. Whether you just follow my story and comment on my blog, whether you follow me on social media and write me inspiring messages, or whether you know me personally and have taken the time to wish me well. Thank you. It means a lot when you are struggling to make it on your own.
I am getting more sick by the day it seems. I haven’t had a solid poop in 3 weeks, I am still bleeding, I am nauseous, tired, faint, I have no appetite, and feel like such a scatter brain with this brain fog. It feels like how I was a couple months ago. So I called my doctor and of course there were concerns. I had been on Humira now for over 4 months, I should have been well past this stage last month. So we did more tests because something is wrong. We don’t know what yet, but there is something wrong. It could be that I stopped responding to Humira, that I got an infection, that my disease is too strong and Humira is no longer enough. So many possibilities, but none are really that great. The best would just be an infection at this point.
So I did my routine tests and now I’m just waiting. Waiting seems to be the time when I get the worst. I stress because there’s too many unknowns, I stress because I feel so sick and I’m at the point that I don’t know how to help myself, and I stress because I just want this to end not start all over again. I beat myself up because I’m supposed to be past this. I’m supposed to be better and getting ready for my trip, not looking into the very real possibility of having to cancel it at this point.
I feel trapped within myself, physically and mentally.
But I guess when you are battling yourself, whether its an autoimmune disorder or not, sadness is a common side effect, isn’t it? How can you not be sad or beat yourself up when it is literally your own self that’s hurting you? My own body has decided to turn against me for whatever reason and right now there isn’t much I can do about it. And when you lose that much power over yourself, isn’t it normal to just let it consume you? To just start to detach yourself from you because it’s becoming too hard to battle yourself?
I kept telling myself that it was normal. That I was allowed to be sad and mourn in a way (which I still think is true). That it was normal to cry myself to sleep some nights or cry most nights if I’m being honest as I watched my body wither. I told myself it’s okay to just not want to go out to do things because I’m an inconvenience anyways, so why hassle people? (But it’s all in my head because none of my friends or family feel this way). I told myself that this sadness was normal, because I wasn’t thinking about dying. I very much want to live. In fact I want to do the exact opposite of dying. I want to escape and scream at the top of my lungs and just feel alive again. I want to do things without fear again. So because I didn’t want to die, I “wasn’t that bad”.
But that’s a lie and I need to accept that yes I am sad, but I need to handle it better. My body was trying to tell me that this was more than just normal sadness. I shouldn’t cry almost every night resulting in a head ache nearly every morning. I shouldn’t want to sleep most of my day away because so far that’s the only way I can fully escape the pain. I shouldn’t have to lie to everyone every time someone asks how I’m doing. I shouldn’t feel like I’m completely alone even when I’m surrounded by friends and family. I shouldn’t fear what every waking hour is going to be like because my body has become so unpredictable. I shouldn’t stop looking for the good in any situation and always look for the bad to prove myself right that it’s better to just not do anything.
But I do.
And I’m scared because I feel like I keep forcing myself to plummet in this downhill spiral and one day I’m not going to know how to get back up.
I am my own worst enemy. I have always been.
Sadness is a tricky emotion. In some ways it provides you this false comfort and that’s what I clung to. It’s not until someone else is trying to shake you back to reality that you realize this blanket of comfort isn’t comfort at all. It’s just sadness. An emotion we all need to go through, but that’s the key. To go through. Work it out. Not cling to. Because one day you might finally take the blanket off and realize that the darkness which you would once seek under the blanket, is the same darkness that has now completely consumed your world.
I don’t know if this makes sense. I’m just rambling at this point to try and clear my head. Get myself to make better goals again. To get better.
But I also want to remind anyone who is going through their own battles, whether it’s because of an illness or not, that you need to push through it. I don’t mean the disease itself, I mean push through the depression and sadness. It is so unbelievably hard, trust me I know. I spent most of my week last week watching Law and Order SVU and crying rather than being productive because it just felt easier to give into what I was feeling. It felt easier to just check out rather than face the situation. And you will get tired. You will question what’s worth it or not, especially when it seems like all your efforts result in nothing. You will need days to just cry it out. You will need moments to just be alone. You will feel numb because you have felt everything so intensely for so long and now you’re just burnt out. You will crave the hours where your mind stops rushing with thoughts and what ifs, where you spend more time daydreaming what could be instead of living life, and where sleep becomes an escape. You will (or maybe not if you’re lucky) go through this and more. But one day it has to stop. One day you have to get back up again, just as you have many times before. There’s a sadness you can work through and is necessary to go through and then there’s my sadness that was more self loathing and “woe is me”, which in the long run isn’t doing me any favors. You can only beat yourself up so much before it takes a toll and trust me, I’m reaching that breaking point. Remember no one can save you from you. Only you can.
So this is my start, again. To get back up again and maybe stumble through this battle. To face whatever challenge lies ahead (I find out Monday what’s going on) and just accept that I can’t control this. I can only control how I react to the situation.