I was sitting in a meeting today and suddenly realized that I no longer have anything to offer to our council group. I used to be Director of our church project but had to give it up because I was constantly ill. I took a spot answering the church phones and light filing. I also stayed on council. Today as I listened to our new council members I realized I no longer have anything to offer. I live in a box where my life revolves around being ill. I have no skills.I no longer have experience.
Tomorrow I am going to resign. I used to say I would keep fighting and keep working but now I feel like it doesn’t matter. I feel that my illness has caused me to lose my identity.
This is mostly a vent and I guess responses aren’t really important. I just don’t know to find a balance so I can still be a productive human?
I understand, I am not able to work anymore. I have decided to focus on my hobbies that I have neglected. Especially my painting. Plus I volunteer for 2 hours a week working with a children group run by our church. The main thing here is to not let your illness define who you are. I was recently diagnose with Sjogren suffering with it for many years but the doctors couldn’t figure out what was wrong until recently. For me the worse part besides the pain is the what they call as “brain fog” so I am reading more, doing some games that have me thinking, plus I am working on bettering my sign language skills. The main point is find what interest you and keep as active as you are able to.
This is all part of the process we have to go through to get to a place of acceptance. I know how this sounds, but the more we evade the impact illness has on our life, the more difficult it becomes to live with it. There comes this moment of clarity when we actually do awaken and see it clearly. It's the realization that we cannot do it anymore! This 'it' that I'm referring to can be work, work at home, care giving... It's a fill in the blank.
I agree with Dingy, refocusing is crucial to keep from losing yourself all together. Riding in the car is a very difficult for me, the pain is excruciating, so I spend hours of my time here on various Ben's Friends communities. It's a worth while place to be, and no car riding required.
Keep in mind this does not have to be something you force yourself into. Take some time if you need it, want it and relax. Surely there were days you went to work or to volunteer that you would have really preferred to be home, and enjoy your home, and anything else that makes you happy!
I hope this made a bit of sense, and helped you realize just how valuable you still are! How wonderful that you so lovingly gave yourself for so long. Now it's time for something else!
I worlked until last July as a nurse. The first few months off i spent thinking I would go back to work after about 6 weeks because i had done this multiple times. Finally after 2 doctors refused to let me go back I was devastated. I have came to relize it was for the best althou i am still getting used to being home and things have really changed.
Prehaps you could call church members to see how they are or volunteer once a week. Spend time to get to no life again enjoy a quiet moment watching the birds sing. Most of all take care of yourself the rest will work its self out.
I retired from my full time position five years ago due to chronic kidney disease. My function at the church was part time just to help me keep my sanity. Type A people do not do well when suddenly faced with a new way of life. I wasn’t diagnosed with Sjogren’s until last. Year and I am currently being tested for a new AI.
Today I met with Pastor to tell her I was resigning from council. I left it up to her if she still wanted me to stay to answer phones and do light idling. Needless to say she was shocked at my resignation. I told her I just had nothing to give anymore. She told me that it’s not true and she told me that she sees this as my way of distancing myself from the church. I told her that I felt my illness and inability to be a full participant was hurting the work of council. I told her that my existence had become a little box where my illness lived and everything else was on the outside.
She decided that she was not going to let me fall into a hole and for now I will continue to work 15 hrs a week picking up messages and doing light filing. I have very little to do and I may ask them to cut my hours and save themselves some money. I guess it won’t work because she seems to have the need to save me from falling into a hole.
This whole thing has left me exhausted. I guess some people with envy my position that their job wasn’t going to force them out. Thanks for listening. I know this is not the usual type of topic that comes through here.
Information is important, but not as important as supporting our friends! That is the big one, the one that counts, always come to us, please?
I surely see your pastor's point of view, all I can tell you is to suit yourself, no one knows your body better than you! I do agree, no falling in the hole allowed! So try it, if 15 is too much cut it back! If this is really important to you, even one hour a week is something to look forward to!
HI Cassi, I can feel your confusion and distress over your current problem. Stopping work was one of the most difficult times in my life. My employer would not accept a request for decreasing my hours, labor attorney became involved and I ended up on disability. No matter how bad I may feel, each and every day I find myself missing work and it's been 2 years this month. I wish I could go back to my job, but that door is shut. You have your Pastor who sounds as though she is willing to work within your limitations, that is an awesome gift ! Even if you feel worthless at the job, it's obvious others see you as a valuable commodity, you DO have something to give others.
I wanted to start volunteering to get myself out among people and interact with them, however next month I need foot surgery so that plan has the brakes on for now. See yourself as others do, try to hang in there( but don't let others force you) as long as you can. I'm telling you from my experience I would keep working in a heartbeat! I miss the people, the critical thinking skills, the feeling of being there for others and of course the paycheck ! Follow your heart, but also keep those other options open too. Feel Happy :0)
That is the mirror image of my story! I am so frustrated with the fact that I had to give up my career that I loved. I was planning on getting my PhD. so I could further my career goals. I had only had my Master's Degree for a couple of years before I got sick. I remember when I had to go to HR and sign my career away. I remember exactly how I felt when I picked up that pen and signed my name on so many forms. It was real! This is my life now. What do I do now!! That was a couple of years ago. When I got home to put my house clothes on, I opened my bedroom closet. There were all of my career clothes and shoes.....reality hit me hard. I have no control of who I am & what I can do in my life. It took YEARS for me to accept my new unwanted reality. I literally had to go through a mourning process before I could move on. Now, I'm on SSD. I am not nearly making the money that I used to bring home. I had to Let Go Let God. It's the only way that I can make it through this shocking life change. You're not venting. You're expressing your thoughts about a serious situation. Take Care & God Bless.<3
My brain fog is off the charts EVERY SINGLE DAY 24/7. I have also decided to get back into painting. I certainly don't know what my painting style will look like now. My creativity went along with everything else.I really, really want to write a book. But, I can no longer remember how to spell a lot. It takes me so long to even write a paragraph.
Dingy2014 said:
I understand, I am not able to work anymore. I have decided to focus on my hobbies that I have neglected. Especially my painting. Plus I volunteer for 2 hours a week working with a children group run by our church. The main thing here is to not let your illness define who you are. I was recently diagnose with Sjogren suffering with it for many years but the doctors couldn't figure out what was wrong until recently. For me the worse part besides the pain is the what they call as "brain fog" so I am reading more, doing some games that have me thinking, plus I am working on bettering my sign language skills. The main point is find what interest you and keep as active as you are able to.
I miss work too, but know I cannot be on my feet 12 hours a day and could never handle the stress anymore!
I slowly donated my business suits and shoes, over time. That was very hard, but freeing too! It helped me let go, like donating clothes of someone who passed away, it was a must for me!
I still gravitate toward that type of look for dress, but have enjoyed the new more casual me!
When the work bug bites me, I just have to remind myself how impossible it was in the end to try to keep the pace!
Hey confused, my Rheum explained the 'fog' very simplistically as "from chronic pain, and lack of sleep due to chronic pain"! BINGO! I've been up every night til daylight because it hurts my SI joints to lay on my back, and it hurts my hips too bad to lay on my side! I have Morphine, but also have my 11 year old grandson here with chickenpox for it's duration! I don't like to take them around him, however not sleeping is not the answer either! So it's gonna be a morphine day since I don;t have to drive him to the Dr, they took my word on it!
How wonderful that you have the ability and talent to paint, something I admire tremendously! I have no inclinations for success with art, it went to other family members! My grandson is a great artist, and I plan to get out the paints, markers, chalks and watch him go! He is so talented I want to frame some of his artwork!
I can only encourage you to set this up again, so that you can revisit your painting! I'd love to see some of you work, so please post it for us, if you are comfortable sharing. Keep in mind the kids laugh at my stick men! So I'm gonna love your stuff, I'm sure!
Now I'm having a moment trying to remember who wants to write, but can no longer remember how to spell! Hey, I have to look up spelling constantly, or you all would think me an idiot! Write the book and go back and clean it up later! Flow writing is the most natural and enjoyable! ALWAYS!
most of you dont no me that well yet but i ones on fibro do i can not spell i will be sitting here trying to write a word and looking up on my phone how to spell it lol
Oh Cassi, you hit a nerve for sure. Hang on to "yourself", as tight and as hard as you can, and remember, you are someone special, someone beautiful, and very much needed in this world. We may only know each other by our illness, but we do have that bond here. I come to this group and just read, and read, and feel so in touch with everyone, even if I hardly share or respond. It is just a place of comfort. My goodness, I tell myself no, don't start, you will never stop talking about all your troubles. But you know, that's what everyone is here for. So you all may be hearing a lot more from me. Hope to get to know you all better. Thanks for being my rock, or should I refer to you all as my pebbles? So many I mean. Sweet.
As you can see, many of us are facing the same or similar problems. I use to be so organized and energetic. Now, I feel a shadow of my former self. I think it’s important to do what we can when we can. It’s important to be productive; but that definition might need to be tweaked.
And it is good for our health to be socially involved. Studies show this. Don’t compare yourself to others or your fOrmer healthy self.
I recently started taking Spanish classes since I had a natural ability. It’s been wild and Many times not in a good way. My natural ability is gone and I missed a bunch of classes due to illness and had to hire a tutor! I’m plugging along very slowly. But I’m meeting people and it gives me plenty to do. I know it’s hard. I have some days that are simply awful. And most folks don’t have a clue or they think I’m exaggerating. I’m getting better about that. Some of these folks would end up in a mental institutiOn if they felt the pain I have felt.
I’ve learned from this site to enjoy the good days and count my blessings. I hope you stay participatory in your church. You are more needed than you realize and it’s good for you too. Blessings!
Cassie, I'm glad you are still going to work for 15 hours a week. It will give you someplace to go. It means you 'have' to get up, get dressed, and be somewhere you are needed. As we keep reading, and myself included, we got to the point where our illness required us to leave our careers. I haven't been able to work for over twenty years, and I still miss it. I have tried over the years to take on part-time jobs, only to not be able to continue. The pain of sitting was too intense... I even tried working for my massage therapist, bartering for a massage once a week...couldn't even continue with that...Most of us feel useless sometimes, and that's not good for any of us....we all 'need' to 'somehow' continue with feeling good about ourselves. If we can try hobbies, crafts, volunteering or whatever we can to keep our brains active. Although I suffer terribly with brain fog. Today I was supposed to meet a girlfriend for lunch...I planned on leaving the house at 10:45 to get to the restaurant about 11:15....well here I am at 11:15 'waiting' to leave in about an hour....WHAT, I was thinking I was leaving at 11:45....I raced out of the house, speeded across town, and boy did the two brain fog babies have a laugh!!!!! I'm always loosing things, misplacing things, and can't think straight...I don't know how I would even function if I 'could' work.......we just have to keep trucking on. I for one think if you can work, even if it's just a little, do it. God Bless you.
Thank you for sharing-my identity is lost right now too. I worked so hard at my relationships and now do to Sjogrens neuropathy and breast cancer I feel like I am just an observer of other people living. Even my family (2 sons in their twenties) seem extremely uncomfortable around me with all my changes. It is good to be able to tell someone that I am so sad, thank you.
Thanks to all for your support and input. I belong to another Sjogren’s forum but have never received the responses and support that I have received here today.
She also said something to me that bothered me. I used to have a large responsibility there. I did fundraising and networking and ran a well established program when I stepped down it felt like they were caught up in all the new things we were starting when I was involved. I was saying that I lived in my little box of illness and life was moving past me and I was feeling forgotten and left behind. She told me to stop feeling like I was rejected and a victim when what I am feeling is the loss of who I was and what I was able to do. Part of me is still trying to figure out what is happening to me but victim doesn’t describe it. I feel lost and empty. When I picture myself I see myself standing alone.
You guys are right. I need to find something that will engage me. I have to find the new me.
I am sending virtual hugs to all of you for sharing your thoughts and experiences.
HerShey
I am so sorry that you are not getting the support of your family. Sjogren’s is bad by itself but adding cancer just seems to increase the challenge of trying to survive. Sending hugs your way.
HerShey said:
Thank you for sharing-my identity is lost right now too. I worked so hard at my relationships and now do to Sjogrens neuropathy and breast cancer I feel like I am just an observer of other people living. Even my family (2 sons in their twenties) seem extremely uncomfortable around me with all my changes. It is good to be able to tell someone that I am so sad, thank you.
I agree that when you finally accept the limitations these diseases put on you it’s just like mourning a death. The death of the life and the person you used to be. It’s not easy and it’s not giving up it’s just realizing things are forever going to be different. I am also missing the old me so much and I feel so quietly for not being able to care for my family like I used to. I try to look at the bright side just right now I can’t seem to find one.