As usual, while most of the country is asleep...I am awake. I cannot seem to sleep more than an hour or two consecutively. At night, that is. During the day for some reason I can sleep for many hours. My throat has three ulcers in it, and I have usually only dealt with one in my throat at a time. Don't get me wrong, it is always accompanied by ulcers all over the rest of my mouth. The pain is excrutiating.
Still dealing with the weight gain issues from the Prednisone. I don't intend to sound like a broken record, as I know I have discussed this before. But that is how prevalent these side effects are in the way they influence my day to day functioning. I mean, every time I walk by a mirror, I reluctantly glance at myself and immediately wish I hadn't. It just sends negative self talk throughout my brain..."I'm fat, I'm disgusting, I'm gross, I shouldn't look like this, I'm a hippo, I am so ugly...." I can't help but think these things because I went from being skinny and pretty attractive ( I wasn't the prettiest girl in the world, but I was confident and liked how I looked).....to looking like this. The change is so drastic. I don't expect to look like I did before I ever began taking steorids. I was honestly too thin and if you can believe it I had problems gaining weight. I wish that was my problem now. I was so active, always playing sports and running, doing yoga, mountain biking, hiking, etc. Working out was a great stress relief for me. Now, my body won't allow me to perform those intense work outs. I can't really work out at all. I can walk, but I don't consider that a real work out. I feel so incredibly POWERLESS right now. I have no control over so many things in my life and it is hard to come to terms with that. People say that it's just the medication and it's not me. Well that is almost more difficult to handle because if it were just me and the way I ate or something, I could change it. I could be proactive and do something about it. I really am powerless. I have no control over what is happening to my body. I know I have control over how I react to it all, and I am trying. Believe me I am. But the longer this persists without having a break, the more it wears on me. The human body can only take so much! I am staying strong and trying to hang in there.. Why can't I get a break?
I was thinking tonight....I have nothing to look forward to. I don't really enjoy anything. I don't go out to dinner, or bowling, or out to the bars. I don't go to parties, or concerts, or sports events. I don't have a significant other to share my love with or receive support from. I just want something to look forward to...something that I am excited about. I don't mean to sit here and ramble off things that I don't have. It is important to release these negative feelings so that they don't sit inside me and build. It is cathartic to express everything that is on my mind. I have this problem.....whenever I watch a movie or go out in public, I look at others and think.....I wonder what it is like to be them? I wonder what it is like to wake up every day and go to a job that you love, spend time with your own husband and kids, feel the exccitement of everyday successes. I wonder what other people suffer from...Do they take things for granted? Or do they appreciate everything they have in life. Do they appreciate their health? This may sound strange....or a bit crazy...but I am being completely honest here. I look at attractive girls and wonder what it is like to be pretty and get attention. Instead, I get stares because I look odd...The swelling causes different kind of weight gain. And the redistribution of fat makes my body look disproportionate.
The bottom line? I am pretty sure I speak for many of us with Behcet's (and those with other chronic illnesses) when I say that I wan tmy life back. I want my body back, I want my job back, I want my social life back. I want to wake up and not feel sick. I want my body back. I want to be married and start a family. I am not trying to be selfish. I just want things that healthy people have. I want to be me again. I know that the process of being me is ever changing and that the concept of who I am adjusts according to my life experiences. I guess I want to be the better version of myself. I feel like I have learned so much about life and about myself through the experience of being sick that when I get better, I will have an amazing outlook on life. I will be so happy at the smallest things. I will live in the moment. I will fight for what I believe in. I want to work as a psychologist and help kids and families. I want to help people who have chonic illnesses. I want to try new things ....I am finally getting tired so I will write again later. I appreciate each and every one of you who take the time to read this. Please omment and share what struggles you have overcome recently. I am praying for all of you who may be suffering from Behcet's or some other illness. You can get through this. Hang in there and TAKE GOOD CARE of yourselves!
Lets live like dragonfllies.....
mandi
you do speak from a part of me that use to wish that i could be me again. The dreams that i had to lose, the reward system i had to create which is not a reward system to a normal person. I mean getting into the shower without too much pain is a reward??? Prednisone dont get me started on teh weight gain. although i have changed my diet and taken weight loss clinics etc. Because of my own ability to admit either gain weight and be unhappy or bust my ass and get some weight pushed off. The struggle i am in is a brain MRI. I had it with contrast and no contrast for neuro behcets diagnosis. There is swellign they knew that and we are going to see how bad, im 27, i want to be doing what peopel my age get to do, why me etc. Then i see the honesty and what i can deal with. i am everyone's choice to talk to because i know so much and experience so much but i would like them to at least try to understand that i meed an ear. One thing. Since when is caring and loving who and what you are selfish. You deserve happiness because why should everyone else get to feel it. I enjoy your blog and I im new to support this way. i tried family and friends but they try to fix and change then get upset and put it on me. Please know that your battle is not alone and thats where i am with this brain problem. If it is neuro-behcets and there might be tumors. Then what. thats worst case. Just diagnosed with glaucoma from being on the prednisone monday and now this. I find these days to be pointless most times, but i read this and you have hope and well id like to be as strong as you :) thank you
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