This post isn’t some inspirational build you up false hope post. This is real emotion about what I am going through. I don’t know if this is helpful to others. But maybe it will help people understand what we chronically sick people deal with daily emotionally. So read at your own discretion without judgement. This is what it’s like to be in the mind of someone who battles their health daily.
I’ve been really down the last few weeks. Hell let’s be honest I’ve been down the last year. This past week was the anniversary of when my life came to a screeching halt. In one day I became so sick that my life stopped. I was hit with the stomach virus that left me with horrible vertigo and a world of hell. This lead to the diagnosis of my Acoustic Neuroma brain tumor. Needless to say it’s been very hard physically and emotionally. I have moments of scraping myself off the floor and getting back up. But ultimately it seems something else is always trying to knock me down. At times I feel like the Universe is conjuring against me to see if it can break me again. So much crap has hit me in this last year. I was just put in the hospital again last week. And it has worn me down. It’s hard to explain what is going on with me to people who have not gone through it. I feel like I have let so many people down because I cannot give what they expect of me. I feel like my relationships are strained. I feel like I have lost so many people in my life because of my chronically ill body. But on the inside of this chronically ill body lives a lively person with feelings, emotions, passion and desires. There are so many things I want to do with my life, but my captor will not let me. I have become a hostage in my own body. Desperately fighting to get better so that I can live out my desires as normal human. The only way I know how to explain to others what it’s like to be chronically ill, is being a hostage.
For many years I’ve suffered with horrible back pain. I have struggled with life trying to live it as much as I could while battling pain every second of every day. I tried to do my best to maintain past jobs fighting through the pain. I tried to be a good friend and show up and be present in my friendships. I tried to have relationships and give my all to them to prove that I cared. I did these things while suffering every second of every day in horrible pain, while being a hostage I my own body. It wasn’t easy. I gave all I could. But for most people all I could give was never enough. Eventually people start giving up on you because all you do is disappoint them. And the reason you disappoint them is they have no idea what it’s like to live a life of pain where every little thing you do makes it harder. They expect from you the same that they give or are able to give. But the problem with that is someone with a chronic illness can’t always give what a healthy person can. It takes twice much if not more to do simple things that they don’t even think about doing they just do them. Like getting dressed, just for me to be presentable for public viewing takes so much effort and pain. By the time I am showered, hair done, make up done, wardrobe picked out and put on…well I’m utterly exhausted. I have no energy left for getting out and having fun. I can’t follow through on the plans I so desperately want to keep. So friendships drift away. Relationships fizzle out. And eventually you are sitting there all alone fighting by yourself. You become scared. Scared that you won’t be able to fight this battle alone. At times you start to think you will be alone forever. Because who is going to want to take on the huge challenge of being in the life of a person who is always sick or battling major health issues. And in that moment you are reminded that you are a hostage.
Who do you blame for this hostage situation? You are angry and want to blame someone for the damage that was done to your life. For all the things this pain and illness has taken from you. But there is no one to blame. You didn’t ask for the health circumstances you have. You didn’t do anything to get a brain tumor or a bad back. And no one else did either. There simply is no one to blame. That doesn’t make it any easier.
My suffering has been long and hard. Dealing with one chronic issue is bad enough, especially chronic pain. As if battling debilitating chronic back pain for 13 years wasn’t enough, last year in May I got diagnosed with my brain tumor. I have struggled so much with this tumor that has taken so much from me. It’s taken my hearing on one side, my balance and ability to function normally. It’s taken my quiet and peace of mind leaving me with constant nonstop horrible ringing in my ear. There is never a moment that doesn’t have horrible sounds that torment me inside that no one else can hear. At times you think you are crazy when you hear these sounds, but Tinnitus is a reality for many Acoustic Neuroma patients. This tumor has taken away my ability to drive and work. It took my ability to get out of the house when I want and my freedom to see my friends or even date. The tumor was taken out and that is what I am left with after surgery. This recovery has been a living nightmare. Its worn me out physically and emotionally on top of the chronic pain I was already in. As if that wasn’t enough before surgery I had an eye virus from hell that put me in the hospital for a week. I battled it for months and then it led to the diagnosis of another brain tumor, my meningioma. Then that wasn’t enough, after my brain surgery I started having horrible new neck pain along with my existing back pain that caused my arms and legs to go numb. I found out I have a compressed spinal cord and pinched nerves in my lower back. Now it looks like I will need surgery to prevent further damage to my spinal cord and to prevent me from being paralyzed. I live in fear daily now that any move I make will be my last. It’s terrifying to think one day you could be walking and the next you could be trapped in a body that can’t even move. And if all that wasn’t enough…the very medicines I used to control all my pain from those issues are what put me in the hospital. Now I’m weak with no energy at all. Since last week after I got home from the hospital I have been pretty much in bed. I simply can’t function. My body is weak and dizzy and falling over almost every time I walk. Again I am a hostage.
When I was a kid I remember looking forward to being an adult. I had so many dreams for myself. You plan so many things out for your life. Like being a wife and a mom and having a family that loves you and you who love. Having a successful career. I wanted to travel and see the world and learn about different cultures, eat amazing food and enjoy the beauty of this world. I wanted to be the kind of mother that raised amazing little humans who would make the world better one day. But then you grow up and find out life doesn’t go as you plan it. I never would of thought at 40 I would be suffering with several chronic illnesses, divorced, and with no kids. All alone. I thought I had control over my life and the paths I took. And I do to some point. But once again reality has reminded me that I do not have full control because I am a hostage. I am a hostage to these health issues that torment me daily. I am trying so desperately to escape this prison my body has created and trapped my soul in. But every time I fight and think I’m winning it challenges me again. I keep having more issues thrown at me. And it utterly wears me down. You look back at your life and all you can see are things you didn’t get to do because of your crappy health. Because of this when new opportunities or people enter your life you get scared. Scared that you won’t be able to live up to their expectations of what you can do. Because you simply aren’t in control of your life anymore. At times you push people away because you don’t want to bring your misery into their life. You realize it’s bad enough you are suffering but as much as you want to live your life freely you also do not want to ruin another person’s life with your problems. So you retreat and again you are a hostage.
Living a life in chronic pain or illness is not easy. It’s not just the physical issues that wear you out. But the emotional side of it. You fight every single day with all you have to get better and get your life back. But something keeps happening to remind you that you are a hostage and not in control. It utterly wears you down. But with any hostage situation you have two options. You can either allow your captor to control you or you can fight for your life. I have been fighting for my life for years. This captor of mine is mean and hard to battle. So I have to look inside and see the things I want and fight hard to escape this prison I was put in against my will. I have to wake up each day and set goals for myself. They may not seem like much to most people. But they are huge for me. Because when you are a hostage and someone is constantly tying you down and beating you up even the little steps you take to get out are huge. Eventually one day with enough of those little steps you will find your freedom again. But the one thing you have to remember is do not give up because you can’t become free in one day or with one step. It will be hard and it will test your every ounce of being. And though you want everything all at once you have to appreciate the small hurdles you’ve crossed. You have to see that there is no time frame you can set on freedom or your recovery. But stay focused on the light ahead of your darkness. Just take one step at a time and slowly but surely you will arrive at a place that is good with peace. Eventually you will look back and see all the chains that held you back that you broke free from. In that moment you will see that you are no longer a hostage but a warrior that is strong and full of light. Because you fought an impossible fight and you won.