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.
Picnic with Ants 
Wendy,
I’ve sure missed seeing your posts. I was hoping you were soaking in the sun and finding a healthy lifestyle in AZ! Good to hear you will be starting ASL. Living with drastic changes in health certainly pose a number of problems. It sounds like you can identify many things and are beginning to work on your goals.
You have had significant losses this year. Sandy was a major loss, she was your constant companion for so many years. I can’t even imagine! You are not alone in your “ups” and “downs” … but we all missed you! If you are up to jotting a line once a week, you’ll continue to find support from those who deal with chronic illnesses.
Take care and stay safe,
Edie
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Wendy – that’s the girl I know! You can do it. It will be hard but you can slowly do it.
I have a sign in my office to remind me: “It’s not whether you get knocked down, it’s whether you get up.” Vince Lombardi
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Hi Wendy
I am so sorry to hear that you are still having so many health issues. It’s totally understandable to lose yourself…… After all chronic illness does become all consuming and since we can’t concentrate on anything but being sick ( or getting better) when we are unwell, how can we be anything else? Does that make sense?
I know that stress is a huge part of the viscous cycle so I do try to remain calm when I am like this. It’s difficult, but I try. It helps me to visualize how God sees me, not how I view myself. A few weeks ago we had a challenge at my church to paint our “spirit”. I’m a terrible artist so mine turned out looking like a colourful kindergarten painting but it was relaxing just listening and trying to illustrate the real me. What is on the inside, not the outside! You are an artist. When you are well, paint your spirit and then put it where you can see it all the time to remind you of who you really are! You are wonderful in His eyes!
Hugs
Deb
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Hi Wendy,
It is wonderful to hear from you and see that you’ve been given enough of a reprieve to put your thoughts down to share with us all.
I must tell you that your writings are a huge inspiration to so many. I know it is painful to feel misunderstood, especially by someone who should know us so well or who should be able to accept us as we are. Unfortunately, not everyone is as mature, or evolved, as we think they should be. Not everyone’s “there” yet and some never get “there”. We are not responsible for the feelings of others. Ever. We can only control our own responses, never someone elses.
When I feel criticized or not liked by someone, I remind myself that even the most successful, inspirational people have their critics and enemies. I think of Gandhi, the Dalai Lama, even Jesus. Despite entire nations leading the charge against them, they followed their internal compass and rose above it all. Follow your heart and know you are doing your best.
I love how you have brought together these other inspirational people such that we can all learn from each other.
Keep on keein’ on. 🙂
Angelea
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Oh Wendy!! We all get lost sometimes, don’t worry. Sending you lots of positive waves and hoping to hear from you more soon. Love love love!
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*Hugs*
You are a beautiful and wonderful person. You’ve been through so much this year. It’s hard to fight battle upon battle without, at times, feeling lost. And I know how much you were looking forward to moving Tuscon and seeing how being in that environment would help you physically and emotionally. It was a very rough way to end a hard year especially when you are trying something that you hope would help you feel better.
I’m so happy to see you finding yourself again and I’m sending you much love and healing thoughts.
Maureen
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Just to let you know, I’ve dropped by and am wishing you all the best with your new plans and outlook.
Hope, too, that you can get relief from your chronic health issues. The addition of new symptoms/conditions is heart-breaking.
This is probably insenstive, nosy (and mentioned previously in your blog) and extremely wrong about right versus left , but can the implant not be readjusted? Or, have other health issues meant that it can’t be made compatible?
Wishing you all the best in 2013 (even with the date involved!). Afterall, there can’t be a 13th day of the 13th month of the 13th year — least ways not yet.
Take good care — folks have missed you and are all sending hugs and gentle “pushes” towards your goals — large and small.
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Phylor, you know I don’t mind any question you ask…about the implant. Ummm, yes it can be adjusted and it will be when I get home, but for some people they always here things synthetically. I don’t know if I’m one of those or not…but right now I am , and the damn thing drives me crazy. (especially when the right ear is down and my hearing aid doesn’t help). We are planning to learn sign language for those times I just don’t understand, or when technology isn’t working…like…oops, dead battery and I forgot to bring another. Also I think I would feel better about my hearing problems if I got more involved with the non hearing community.
does that answer your question?? you know I’m not that sensitive. w
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Thanks for explaining the situtation re your implants and further loss of hearing.
I am hesitant to ask such questions because, due to increasing cognition function impairment, I’m regularly asking questions that have already been discussed/commented on. You know, for example, how quickly I forget things like addresses, lol. If I preface my comment with “I’ve lost a considerable chunk of cognative function,” then I feel driven to explain further, making my comment long enough to be a blog post, lol. (I have to keep better notes!)
Given the public nature of the cyberverse, I sometimes worry that I’m asking/commenting on something better dealt with in an email. And, projecting me on to you, not feeling good beyond the usual = let’s let that subject rust into dust.
See, I did it again — my response soon will be as long as your post!
Learning ASL will open up a new world, a bridge between the hearing and nonhearing communities. And, you might be in a situation where this knowledge will be of benefit; you might be able to “translate” words into signs, or signs into words.
Here’s to a good 2013!
PS (to make this longer), I completely understand the weight issue, and the effect the gain has.
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