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Vulnerability

Luke747
  • By Luke747
  • Posted March 20, 2009 at 1:28 am · 24 replies
  • Shared with the public
3 Recommendations

Living with a chronic illness has forced me to become vulnerable. I was a very capable woman, able to keep many balls in the air at the same time - go ahead and throw another one at me. Fibromyalgia eliminated multi-tasking. It seriously compromised my independence. I needed a driver...I needed favors...I needed someone to clean my home for me...I needed to trust people...I needed to not need anything...I needed to be okay expressing my needs. A few years before fibro, I had breast cancer. When the surgeon removed my breast, I didn't feel like less of a woman. But not being able to keep up my home and cook every day - that stole my womanhood from me. Since fibro, I have watched my husband lovingly and without complaint take care of things I should have been doing. I felt like less of a woman. That has come and gone, I have adjusted and processed all of that. But the vulnerability remains. And that's a good thing. There isn't anything I wouldn't do for anyone...it's only fair that someone with that same heart is fulfilled by meeting my needs.

Explore topics in this journal entry and replies:

Cancer Surgery Scoliosis Nexium Glaucoma Breast cancer Ovarian cancer Pain Memory Neurontin Lyrica Fibromyalgia Muscular dystrophy

24 replies

KateG

Hi and welcome.
I did not allow myself to be vulnerable. Despite my body's call for help I pushed it and pushed and pushed it. Until very recently. I accept the handicapped parking permit, I take the handicapped entrances without thinking people are thinking, "she's just bluffing". It's a real head trip. I still really haven't allowed my body to call the shots. The pain is so familiar that I accept it without realizing what it's doing to my soul. Why would someone ignore searing pain? It's like ignoring a fire. I'm going to the pool today thinking I will push myself to do those marathon laps when I know I have to go into the other pool where people do exercises and the water is warmer. I can do shorter laps in the recreational pool, as they call it. Maybe that will bring me sooner to the marathon lap. And maybe not. Thanks for your post. It's made me take a moment to think about how I treat my body and mainly to realize it's ok to listen to the limitations and thank my body for giving me notice.
Kate.

jbrock

Yes I am so glad that someone has finally written down what I have felt for so long. It's like living in a bubble sometimes. You want to do everything you were used to doing but then suddenly realize (this took years) that you just can't push your body beyond what's it's now capable of handling. I'm not going to say doing because i can do everything I used to but I just can't do it within the same time span and for the same length of time now. But through everything make no mistake that I am grateful for everything that i've had to go through. It's made me a better person. I did take some things for granted. LIving with a chronic illness forces you to take stock in your life and what you have. I feel very blessed. You guys take care.

momanderson920

I totally know what you mean about vulnerability. As a mom, I am and was the fixer for everyone in my house. I think most moms are. If someone needs something, they come to you. When I got sick, I needed them. I couldn't be the one everyone else relied on anymore which came to be my identity the way many men view their outside careers (and some women, too). My self esteem and identity was crushed. And on top of it, I also felt like I was invincible before cancer...never got sick when my whole house came down with flu, colds, sore throats...always was the nurse. And for the most part, was fairly healthy in terms of anything severely chronic. I did have reflux but that was very treatable with Nexium and not life changing. This cancer changed it all. I now have to worry about return of my cancer, secondary cancers, encroaching deafness (my ears ring periodically due to the carbo), early stage glaucoma (never had it before chemo/cancer), low stamina, aches and pains in my body that were not there before cancer and treatment, lousy hair (it is all curly since growing back and I can't do anything with it), a permanent IV port in my chest (I can get it removed after a year of no cancer, but am afraid to tempt fate), a scarred mishapen belly, a few lost teeth from chemo, decrese in cognitive function (memory problems and poor multitasking) and low stamina. And for about 6 months post chemo I was chronically sick due to my lowered immune system. Now I have to live in fear of the cancer's return since the prognosis for Stage III3 C is horrible, according to ACS only 31% of women live 5 years (of course I am praying to be that other 69%). Return of the cancer is not if but when. This has totally changed my life. But I am thankful that I am currently in remission and want to make each day count since I don't know what the future holds. And I am blessed that I have wonderful friends and family that have supported me. And now God has blessed me with a granddaughter. Though vulnerable, yes, I am alive and able to enjoy it for the present. And for that I am so very very thankful.

momanderson920

I do know what you mean about being frustrated about not being able to do things the way you used to though. It is frustrating. You feel like you have failed somehow. It has caused me to relate better to older people since that is what happens to them...they slowly can not do what they used to as their bodies age. And they feel less of a person.

Gooselark

Wow - I totally understand the vulnerability you feel. It is a foreign feeling to me - I have been independant to a fault in the past. The main problem is that I have "trained" the people I care about how to treat me and I think it is difficult for them to adjust to the changes also. I no longer seem like the "me" they always knew. This is all new and I fear that people who admired my strength in the past won't understand that it is still "me" in here! It is comforting to hear of the support others find. Does that sometimes take time to evolve in relationships? I am still feeling a little lonely with the problem. I suppose I need to get comfortable with it before I can ask that of others.

Thanks again for your openess about this. :)

djwaz184

Woman have always been the "caretaker" and it's difficult to assume a different role. I've always been the one to go to when something was lost. I was always the one to go to for remembering something from 10 years ago that someone mentioned they liked. I was the one that nursed everyone else to health, I did all the cooking because I love to cook. Now, it is almost like being selfish even though these things are minor - cooking etc. I guess this is what they mean when they say don't sweat the small stuff? LOL

Like many of you ladies, I lost things I didn't even know were there until they were gone. Mainly things to do with memory and such. One of those things I guess I took for granted. I've actually started to "train" my brain again and hopefully get some of the old me back too. This is going to sound funny, but I bought a Nintendo DS (hand held computer gaming) and bought "brain games" and things that would make me think fast. I even have a "flash focus" game that really seems to be helping me gain some of my quick thinking back a bit too, that makes me happy. It's sorta funny though, because this "game" tests you and gives you an age at the end of the testing. I am nearly 40, and I've managed to get my brain age down to 42! It's a way to encourage me and to look for things that help me use my brain. OH yeah, I also bought a crosswords game too, they crosswords are getting increasingly more difficult, but at least it helps me to think.

Gooselark

LOL djwaz! I hear those DS games are great. Use it or lose it, right?!

verlinda

Another great type of game is cryptograms in which messages are written in code (letters equal different letters). The easier ones give you a starting point, example A = C. You go from there to break the code and solve the puzzle.

One word of caution to fibro ladies. I was so accustomed to ignoring pain that I totally ignored my whispering ovca symptoms. I don't want you to be paranoid, but keep track of new trends in your health.

Luke747

Hi, Kate ~ thanks for your vulnerable reply! I, too, had to accept the handicap permit. And it's hard to get out of the car, wondering what people think of me, when there is no real evidence of disability. It has also caused my husband to see others using handicap parking spots without obvious problems and wonder if they have fibro. So much of life is visible. On days where I feel awful but try really hard to look good, people will say "you look good! you must be having a good day." We have an invisible illness that is a very real part of us. Sometimes I call fibro by name - "fibro is acting up today" as if it's a separate person taking over my body. On the lighter side, when my days on a scale of 1-10 are the worst possible, I tell my husband, "How does it feel to be married to a 10 today?" I, too, push myself. Early on, I pushed myself to see if the fibro might be gone. Maybe I really am okay. Maybe all I have to do is live mind over matter. Maybe I've just gotten lazy. So I pushed...and as you know, then I'd be off my feet for days. I find it absolutely impossible to be consistently balanced. It's too exhausting, and every day is different. It's been enough to drive me crazy. So life just has to be flexible - which was also a big adjustment, with me and my "to do" lists. I did try the pool thing, but I could never gauge how much strength I was exerting underwater, and I flared - even under water. And it was humbling to be in a pool with a bunch of 70+ year old women, all having a good time with their water exercises, and I had to lean against the side and take a break. Thanks so much for replying, Kate. I confess this is a quick reply on my part, I'm getting ready for bed. Took a quick peek at my journals and was amazed at all the replies today. You're the first reply I read, and the first one I replied to! I look forward to checking out the rest of them tomorrow, and I look forward to chatting with you some more. Thanks again.

cronicX4

Hi, I haven't been on inspire for sometime, due to moving our family. I understand all to well what each of you were saying. I haven't had cancer, but my mother did. I have had Fibro since 1980, when they used it, so they thought, as a catch all for what they couldn't prove in test. As a single mom, I had to go and go. Now all these years later, they make Lyrica and I for one, am better off for it. The Fibro finally took over my life in 1990's to the point I had to quit working. I started working at home only. Then in 2004 had to stop that. Now, I do all I can. It is hard, but God never puts more on us than we can handle, but sometimes we do! Take care and God Bless. Brenda

shadowtoonces

This is really a good post...I have always had a hard time accepting and asking for help...I know see that is was silly being like that when I was really sick. Not only was I hindering myself, but I wasn't giving others a chance to give back when I have given to them. I now accept help but it has been quite the journey getting there.
I'm going back to work as a RN at our local nursing home. I understand when someone said it's like living in a bubble. I seem to pick up every bug imaginable then down for the count with antibiotics and what not, which has been worse with the sarc. But I refuse to give up my career and already know that I will be armed with hand sanitizer and my skin on my hands will be peeled off from handwashing! And if I have to wear a mask which I really never did when someone else was sick, you bet I'll be wearing one. There is so much lifestyle change after this diagnosis....thanks for the post..praying for all of us and take care, Dawn

Luke747

Thanks for your reply JBrock. You reminded me how my life has changed, and how it's much more okay now than it used to be. At first it was SO frustrating. It didn't make any sense. What do you mean I can't run the vacuum? Seriously, a child can do that. After preparing healthy, square meals for my family for years, now they have to zap frozen foods in the microwave because I can't get up? Gee, I have to sit on the floor against a wall in a department store because my energy is gone? It didn't make sense. It was stupid. Surely there is some way to overcome this. The overcoming wasn't in kicking the illness, though, as you know. It was in accepting it and working with it. It may take me an entire day to prepare dinner, but I can prepare dinner. Some days I can't drive to you, but if you come to my home I am willing to listen and encourage you and be here for you. If I'm unable to get out of bed, I can still talk on the phone with you and be your friend. It's all a matter of modifying. We really cannot do things the way we used to, but a lot of creativity has surfaced in us! We figure out how to keep doing the things we love, we just do them differently now. Thanks JBrock!

Luke747

Hi, momanderson...thank you for sharing some of your story. I remember my first few years after cancer, and the fear. Every time I went for a check-up, I prayed that the doctors wouldn't miss anything. It had begun to spread, but how could anyone know where it was heading or in how many directions? Chemo would attack my whole body, but what if one little cell survived? After chemo I was put on Tamoxifen for 5 years, and I remember thinking how could I ever want to stop the Tamoxifen? It became a security blanket, I was still doing something to fight. How could I ever stop the Tamoxifen and leave myself totally exposed to cancer's whim? Your cancer was much worse than mine was, you certainly are dealing with a lot more than I did post-chemo. And my heart goes out to you. I hope it is encouraging to hear that time really is our friend. People don't understand until they've had cancer how there's another birthday on the calendar for us as we count those milestones. One year! Two years! We count the years, praying to reach five. We take a deeper breath with each year that passes. I understand. How wonderful that you are blessed with a grandchild, and that your grandchild has been blessed to be in your arms. Your profile picture is very sweet. I look forward to more Inspire exchanges with you. I do pray that the Lord would heal you in every single way and bring you a peace that you can't even put into words. Much love!

Luke747

Hi, Gooselark. Wow, you have really been through it, haven't you? I read your journal before replying to you here. I have been such a medical mystery all my life, too, and my husband and I used to joke - when I die, make sure they do an autopsy and they will no doubt name some new diseases after me! But it really is no joke to KNOW how you feel, to KNOW what is happening in your body, and to get no answers. After a year and a half of doctors not getting me, and not even responding when I asked about "fibromyalgia", literally ignoring me, I prayed for a doctor that was a fibro believer. That was the only way I was going to be cared for properly. And God did that for me. My doctor is over and above supportive and believes everything I tell her! And in response to her, I have promised to be a good patient - trying everything she suggests, talking to her only about physical issues (not emotional issues, I have other outlets for that), and keeping a journal to give her about how I feel in between visits. Those journals tell her the real tale.

As far as relationships go, Gooselark, your friends are used to your strength - maybe even thinking you have super strength. Maybe not being able to relate to your strength. Since you are in a weakened condition, perhaps you can relate much more honestly with your friends now. "Guess what...I'm not as strong as I used to be..." or "You know how I used to say this or that...that's just not true anymore, and I don't know what to do about it..." Your friends may be relieved to hear you say things like that.

However, there are people we are safe with and people we're not as safe with. Who are you safest with, where can you start to show a little vulnerability...in baby steps? Who do you know will accept this from you and not think any differently about you? We do find out who our true friends are, unfortunately. But if we don't become vulnerable, then we don't find out. And when those true friends become known, they are precious gifts and you'll be SO glad you took that step. So I encourage you to start with just one person. Don't feel like that neon sign over your head has to be read by the entire world. Just start with one person in your life, and tell him or her that you're not as strong as you used to be and you don't expect them to have any answers, you just want them to know. I hope that helps some.

Luke747

Hi, djwaz184! You are so right. I started doing the same thing a few years ago by playing Text Twist online. I absolutely love word games, but I was so lame when I first started the Text Twist. Then something clicked and my scores soared to the point that I needed to move on to something else. But every time I start something else, I feel like a baby just trying to roll over. Recently a friend introduced me to Sudoku - I could have strangled her! But after throwing the book against the wall a few times, and trashing certain puzzles because of too much erasing (and I HATE using pencils!), I finally managed to complete a puzzle. It has also developed patience in me...just spend a few minutes every day and be happy with a little bit and then walk away.

The cognitive thinking is really the worst of all for me. I was working full time as a legal secretary when my illnesses hit, and I was forgetting court rules...forgetting how to prepare certain things for trials. I was going to a friend privately to make sure I didn't make any mistakes - and she looked at me like I was crazy. I couldn't help it - it was as if I had never learned this stuff before. I had been a legal secretary for 20 years. One day my boss asked me to get a letter we had sent out the week before. I told him we didn't send that letter out, and he said yes we did. I decided to just go to the file and prove to him that we had never done the letter...and there it was, with my initials on it. Even looking at it, I didn't remember doing it. That was so scary.

I haven't worked in almost 5 years now. I had a total physical and emotional meltdown at work as my illnesses escalated over a period of 8 months. I probably will never work again, because my illness is unpredictable and I am unreliable. That was a HUGE ouch. I was an excellent secretary - blindfolded with both hands tied behind my back. Anyone at work who was on overload came to me for help. I, too, was everyone's go-to person in life. Part of what I have learned is that now I need go-to people...and others must rely on something a lot bigger than me. What? You mean I'm "only human" ??? :o)

Luke747

Hi, Verlinda. I loved cryptograms as a kid. Great idea. I am such a puzzle person. Thanks.

What is ovca, though?

Luke747

Hey, Brenda. I'm about to give Lyrica a try. I'm so sensitive to meds, that my doctor has to start me really low and see how high I can go. I'm on Medicare Rx coverage, so I'm trying to find out how much Lyrica will cost me. It's nice to hear that it has helped you. That is encouraging. I've been on Neurontin until now, and can only tolerate 200 mg (2 pills a day). My doctor wanted me at 400 mg, but my body rebelled at 300. How much is your dosage of Lyrica, if you don't mind my asking?

cronicX4

75 mg. 3x day, but right now I've cut back due to our deductible. (3500 before they pick back up 85%-new this year. My husband didn't understand it when he switched. )

verlinda

Hi,

Ovca is ovarian cancer. My sister died of ovca in November, 2007. I was diagnosed the following July. I had extensive surgery and chemo and have had NED (no evidence of disease) since November, 2008. I go for my next 3-month checkup next week. My CA125 was all right, so I'm having my port removed then, too.

The toughest part of fibro for me was the willingness in the mid-90's for doctors to tell me I was just depressed while I got worse and worse. Finally, one sent me to a rheumatologist, who immediately diagnosed the problem.

verlinda

Hi,

Ovca is ovarian cancer. My sister died of ovca in November, 2007. I was diagnosed the following July. I had extensive surgery and chemo and have had NED (no evidence of disease) since November, 2008. I go for my next 3-month checkup next week. My CA125 was all right, so I'm having my port removed then, too.

The toughest part of fibro for me was the willingness in the mid-90's for doctors to tell me I was just depressed while I got worse and worse. Finally, one sent me to a rheumatologist, who immediately diagnosed the problem.

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