Sorry my reply came through three times. Sometimes my phone doesn’t respond to my touch it couldn’t possibly be me lol
I fixed it! No problem!
I really identify with what you are saying, Cassi. I bet a lot of us, maybe even most of us, do. I ask myself why I am going to grad school, or putting in job applications or anything that remotely looks "normal" when NOTHING is normal about my life...or the normal that goes to school, gets a job, etc... I've been a stay at home wife/mom for most of my 28 year marriage, and even those jobs are difficult. I don't have an answer to offer on any of this, really. I am not depressed about it, at least not now, but I am a little lost. What am I walking away with? Wisdom, humility, and a much greater understanding of suffering, but what on earth does one DO with that when some days, maybe for me not every day, but often, I feel the greatest triumph is being kinds to others. Getting up out of bed in the AM. Listening when I would rather roll up like a pill bug and make the world go away. Sigh, BIG sigh. I don't have an answer. There really IS no answer. The next leg of the journey is something else entirely. I am too tired to get excited about this adventure, but I am curious.
I don't think victim so much as grief. We are grieving that other self? I am, anyway. I don't find myself in total grief everyday, but I do grieve the loss of what I once was some days.
Cassi440 said:
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.
After reading all the replies, I had to sit and really ask myself, is this why I am so depressed? Because I am not who I used to be? I don't dance anymore, I don't sing anymore, I go days without even trying to look beautiful (of course I do it for me) but even I am not important to myself anymore. As for therapy, I have had one session, its been almost a month. They can't seem to work me in. By the time I get to see her again, I will be at my lowest again. I went back home where all my family is, for mothers day, a 2 1/2 hour drive for me. But I felt like I just couldn't keep up with conversation. Cried all the way home. My daughters understand, as I am afraid they took after me. That in itself hurts me to the core.
Dear gmabuster,
How nice it is to hear from you, I am very pleased you are becoming part of the group. I actually believe that every single one of us understand exactly what you are talking about, as we are or have lived it! Sharing our feelings with each other make us stronger, more confident Stronger as in no longer alone, and confident as in knowing it's NOT all in your head!
That's an extremely long ride for you, and surely a factor in having trouble keeping up with the conversation. It's difficult to go lay down when you need to, when out of your home, your element. Have you considered moving closer to this 'home' where your children are? Maybe something to consider, if it's possible.
When I went through the 'tumbling down phase', I broke down at my Chiropractor's office one day, just fell apart and sobbed. It positively wasn't expected, but I was in so much pain, no one could find a reason, or broken bones that I insisted I had. I was still working, but could not begin to keep up the pace, and was falling apart. He talked to me and recommended a PhD Psychologist who has a practice that promotes resilience.
She asked me to call her Kathleen, and we hit if off like two long lost girlfriends. We talked about EVERYTHING, and she also explained to me that when people get hurt, or fall ill that all of the things in their life that they never really resolved satisfactorily just fall in, on top of the illness/injury trauma already at hand.
I worked with her for 2 years, she even got me back behind the wheel, as this was all kicked up when I was rear ended for the third time. This was my trigger to set in motion what was at my heels all of my life. Genetic autoimmune. I'll tell you gma, she did me nothing but good. I would have NEVER been able to moderate these groups had I not worked on myself first, and it took more than a day or two! I worked with her 2 years, and was at the point where I jsut felt 'talked out'!
I hope this is not a jumbled up mess, it's late, I'm tired and my back and hips have been giving me a fit, so bear with me. I hope this comes through with all of the empathy and concern that I have intended.
Though this group is very into medical information, they never fail to come through for each other. It is an exceptional group of people from all over the world, and it's where you come to work things out! Hold each other up! I complain less to my loved ones when I have a group to go to with these feelings! We all bear our souls and spill our guts to some degree, at one time or another!
I don't look beautiful every day, and don't care about it anymore! Sometimes it is doable, sometimes not! After not being able to work for nearly a decade, I don't care that I spend quite a few days on my jammies, or without my dentures! I looked pretty good mother's day, so started taking 'selfies', as I needed photos for the various groups I'm working with!
I tell my grand kids that they can come anytime, BUT if they call they have a much better chance of me dressed and having my teeth in my mouth! ha! I try to always have food on hand for them and when I don't or can't I call the town pizza shop for delivery! Why not?
We all get down, and it's okay, it's all part of the process of acceptance, the key is not to stay there, so please continue to take part here, it will make a difference! There have to be things that are good, something always comes out of misfortune if you can work through it!
I would never have had the time to spend with my grand kids, or help my mom get through a broken hip, or spend quality time with my baby brother before his body finally gave up on him, had I not been too ill to work! This is my analytical mind at work, bargaining, needing justification! This illness has given me time, time with my loved ones, and time to make a difference. I feel I am making a difference by what I volunteer here, and all of the wonderful people I have met and brought in to my life. There is something for you too, and when the time is right, it will appear!
As for the PT, does it have to be this organization, or can you change? The PT will do you little good the way they are offering it to you! If you shop around for another, be sure to ask if they are going to have the time to work with you as often as your Dr recommends.
gmabuster, welcome to the group, we are delighted to have you with us!
Wishing you well,
SK
Cassi,
I sure know the feeling. You are going through a down time, but don't give up the ship. You say you no longer have skills and experience...............not true. You bring to the table what many of us do, and that is a life lived.
Sometimes we have to dig really deep to find the bright spots in a day. You just might be someone's "bright spot".
Hugs back to you..........
Connie
It’s hard to write individual thanks for all the replies. You have all lifted me and while I am still crying on a second’s notice I am better. I also took the step to call a behavioral counseling center at the hospital nearby to my rheum. They specialize helping people with chronic illness. Unfortunately there are no open appts for the next few weeks and they don’t seem to have a listing of dates available in June. I might try to find someone even though they don’t specialize in the same area.
Pastor still seems upset with me today and if we can’t work this out I will just move on.
I have been following this discussion for a little while and I really feel the need to comment. My Masters is in Mental Health Counseling so for me, I see some of the red flags of depression going on. Chronic illness, pain and lack of sleep all contribute to it, and rightfully so. As does the difficulty of mourning your former self. It may help to talk through some of this with someone trained specifically in this area. The emotional pain brought on by illness is as real as the physical pain. Most of us wouldn't hesitate to get care when the body is crying……. Accepting and redefining life is very difficult but its vastly better than giving up. I would imagine that may be some of what your Pastor is seeing when she says she won't let you fall into that hole.
Please treat yourself well .Handle with care. I'll be keeping you in my thoughts.
I posted my reply literally at the same time yours popped up. It appears I caught a delay in updates. I'm so glad you got help!
Cassi440 said:
It's hard to write individual thanks for all the replies. You have all lifted me and while I am still crying on a second's notice I am better. I also took the step to call a behavioral counseling center at the hospital nearby to my rheum. They specialize helping people with chronic illness. Unfortunately there are no open appts for the next few weeks and they don't seem to have a listing of dates available in June. I might try to find someone even though they don't specialize in the same area.
Pastor still seems upset with me today and if we can't work this out I will just move on.