Flying Brain – photo from deviantArt.com created by Pixelnase
Throughout my journey having chronic illnesses I’ve fought hard to not allow my illnesses to define me. Yes they are a part of me, but they aren’t all of me. I worked hard to keep some sense of normalcy in my life…and to try my best to keep true to me.
I feel after everything that happened this past year….and not all of them had to do with my illnesses…I lost myself. I became the sick person. I stopped trying to be me. I stopped posting regularly, I stopped doing my art, I stopped cooking (partially because I had a dizzy spell while cooking and almost hurt myself, but I’ve been to scared to start back)….I’ve been living in fear and self loathing.
2012 was one of the hardest years I’ve lived through, (topped only by 1993, the year my mother died). I had 2 new chronic diagnoses, my dearest friend and constant companion of 19 years died (yes I am talking about Sandy), I had contact from someone I’ve loved unconditionally who I haven’t heard from in years and the correspondence was filled with hatred….just true and deep rooted hatred. It would be hard enough for me to deal with anyone hating me, but this person….well the wound cut deep. It’s so hard to explain. I don’t remember a lot of my life before I got my bipolar stable, and I’ve changed so much since I met and married my husband, and since I’ve been sick. I love me…me as a person.
But me as a person was lost. I didn’t realize it until we came to Tucson and I got so sick. Not just my normal chronic illnesses, but more and more. I had a cough that wouldn’t go away…I’m still coughing some. I finally saw the doctor, and I had bronchitis and Asthma. I was born with Asthma, so I’ve known it was there, but supposedly I’d “grown out of it”. I would have an attack if I got around someone with perfume on, or someone smoking, or around things I’m allergic to. But now, I’m dealing with it every day. And unfortunately, I had more vertigo attacks in November than I had the entire year combined. I’ve also been having a huge problem with my GI system. I know my food issues and I’m careful, but things sneak in….and I had no idea….still I’m having bowel issues. And I’m gaining weight. I’m back to being 5 pounds from my largest weight. And that’s way too much for my short body.
It has just been too much. More illnesses. More conflicts to deal with. More being stuck in bed. I got lost and didn’t even know it.
I was lying in bed recently and realized how much I hate me. No, I don’t hate me as a person, I actually like the person I’ve become. Adversity really does create good people. (and I think I am a good person) But, me…my body….I hate it. I’m larger than I want to be, or should be. I have no energy, I’m sick ALL THE TIME! I feel my body betrayed me. And I don’t want anyone to see me when I’m ill. When I do actually get to see someone, I try my best to look my best. I know this probably causes a bit of confusion for people, I don’t look sick when they see me, so how can I be so very sick. I remember one day when friend came to visit with her 2 children. I loved seeing them, but I started to feel very worn out and dizzy before they left. I tried so hard not to let them see. Soon it was time for them to leave, Stuart and I walked them to the door, arm in arm….and when the door was closed, I collapsed. But I couldn’t let her see. I think I’m afraid if people see how sick I am they will shun me, and I will lose all my friends. But really, I think I’ve lost most of them anyway. I’ve hidden away. And I don’t think I could stand for someone to see me really sick. I’d rather be with just Stuart than for others to feel uncomfortable because I’m sick. Gaining weight hasn’t helped. People expect sick people to be underweight. Instead I’ve gained about 60 pounds.
So, now that I know what has been happening to me, I am determined to get me back. The inner me. My blog was very important to me, but I allowed someone to scare me away from it. I can’t do that. I have to write and reach out to those who can help me and those whom I may be able to help. This is such an important part of me. My art has been an important part. I wanted to have something I did consistently….but I’ve failed…I need to get that back. I need to do something that is productive and useful. I’ve felt like a useless burden for too long. I found out about a few charities in my area who knit or crochet blankets, scarves….ect….for needy. One charity that really spoke to me is one that donates to foster children, so they will have something special that was made just for them. (as many of you may know, Stuart and I had planned to be foster parents but ended up not being able to because my illness got so much worse). Foster children hold a special place in our hearts. The charity I found makes items for foster children in a neighboring county, at some point I would like to see the same type of charity started for the county we live in.
So here’s the beginnings of a plan for me. Begin doing something that will make me feel more like I’m a contributing member of society, learn to love my body no matter what size it is or how sick it is, stop listening to old ghost from the past and hope they can move past their hate and find a happy life, learn more about dealing with my new diagnoses, and learn American sign language.
I didn’t mention, I haven’t been able to hear out of my right ear…with my hearing aid…for about a month. So we really need to learn ASL. We will be starting a class here in Tucson next week. It is a beginning conversation ASL class. We will miss the last couple of classes, but feel it will be worth while. This is through a Hard of Hearing and Deaf group, many of the members are deaf or severely hard of hearing, so I shouldn’t have a problem with not being able to hear in class. (Stuart talked to the teacher and she assured him it wouldn’t be a problem, and many people who have Cochlear Implants are members there too.