Grief and Resilience Live Together

Posted by frances007 @frances007, Mar 6 11:14am

I am posting this today because I need some support. I am an emotional wreck for the first time in decades, and while I am usually very good at figuring everything out, I realize that sometimes I do have to allow myself to be vulnerable and reach out to people who might have a similar situation and be able to offer me some guidance. I really do have too much humility, and see that it is my pride about living gracefully with a chronic, incurable illness that has caused me to reach the point where I am beginning to question my own existence and future. No, I am not going to do anything stupid, I just need some support.
I don't know if it is the tapering off of the Effexor or the other things going on in my present situation that have caused me to have crying jags nearly everyday this week.
I thought that giving up my caregiver role would help me to focus on my own health, which it has. It was only until I stepped back, that I realized that providing help to anyone was just another way to avoid my fear about my own health situation, and as a result I am frightened beyond belief. My denial system has been so strong, that once I stopped focusing on the needs of others, I began noticing how awful I felt both physically and emotionally. Yes, I have a positive outlook, or as positive as one could be in my situation, which has been described previously. However, this pain I feel now almost feels visceral. My brother in law, age 73 and who has always been a "rock" has dementia and while my sister has kept saying she would place him in a facility, she has not been able to make this very difficult and personal choice. She learned on Monday that her husband will soon need a wheelchair, a result of a back injury of which could be corrected surgically, but cannot because of the dementia. He would be unable to participate in his recovery. In the meantime, my sister, the only one of two who speaks to me, is suffering from her own health issues, which she has put aside because of her husband's condition. I have tried every way to support her, suggesting modalities to treat her neuropathy, a result of chemo drugs when she had breast cancer years ago, yoga to help her with her stress etc. I have encouraged her to "get some help" which goes against the "family code" of not "telling" and which I no longer abide by, obviously.
Certainly I have it pretty good, friends, a "good" support system, but recently have found that those I have known a lifetime do not want to hear me discuss anything with respect to my condition(s). Yes, they provide me with great support when they want to, give me some financial help when they want to, but what I really need is a true friend who will be my "witness" for lack of a better word. I just texted a friend and asked if he had time for a 15 minute conversation and instead of responding he sent me a video of the beach he took this morning. You can imagine what I wanted to fire back, but did not.
Being chronically ill and living alone is a constant struggle, and I do the best I can to NOT ask for help in any situation. However, I see now that perhaps it is okay to reach out and ask for someone, anyone, to tell me that I am doing a good job, and while my future is grim, I can still live as healthy and productive life as possible.
I am facing so many difficult decisions, alone. Everything is building up and I don't know how to separate all of these conflicting feelings. I still see my friend Carolyn nearly everyday, somehow thinking that she could provide me with the guidance I need and which she used to give to me predementia. What was I thinking!?
I have tried in vain to avoid posting anything as personal as this, but I am confident that someone will read this post and hopefully respond in some fashion that will allow me to continue to stay focused, positive and not do something stupid.
Thank you

Interested in more discussions like this? Go to the Loss & Grief Support Group.

@brandysparks

@nemo1 - So well put, so well expressed.

My only hope is that it can resonate for Frances, you, and those others of us in similar straits.

I am not in a disabling condition right now, but have been dealing with pain from a necessary outpatient procedure / surgery for a month now. What I have helping me is the idea that it will get better. No one exactly has told me this, but I will be asking for more specifics at my next doctor exam this coming Monday. The oncologist and her team have been compassionate, reachable, and helpful in their suggestions, though for whatever reason nothing has resolved the pain - let alone removed it - but the application of Vaseline at the time of the pain, just to keep it brief.

I am concerned, and wanting to know how I can better share Frances' pain - I'm hoping that, much as you wrote, to speak it is somehow to reduce its impact. Here we are 'speaking' it through writing, and the Mayo Clinic Compassionate forum has been so very very helpful.

I hope it helps enough here Frances, and for others (myself included) as we endure through our various struggles, to be able to communicate them in this empathetic forum and with the benefit of others who can share their pain and struggle and efforts to combat, lessen and even remove it, if only enough to reset and remain consoled in who we are and our own essential worth.

Jump to this post

Brandy, what you wrote is beautiful.

I hope you receive answers to the questions you will ask at your next appointment. I hope they give you encouragement and help to ease your pain.

Please feel better.

💜

REPLY
@nemo1

Brandy, what you wrote is beautiful.

I hope you receive answers to the questions you will ask at your next appointment. I hope they give you encouragement and help to ease your pain.

Please feel better.

💜

Jump to this post

Thank you @nemo1, and thank you for your thoughts and words above here.

Good evening, for now.

REPLY
@frances007

Thank you. You know, I used to live with a psychotherapist who often told me, "we are all just a speck." This is how I feel today. Just a dot in this huge world full of millions of people. I think it is some kind of Jungian thing or Nietzsche, but it sure rings true sometimes.

Jump to this post

frances007, God Bless You. I am so sorry you are going through this. Yes, coming off an antidepressant I was told by a dear friend can cause a lot of unwanted emotions.

I'm so glad you felt safe to "unload" your heart. Sometimes we just need someone that will listen and care.

You have made me laugh many a time with your jokes and one liners. You have a tremendous sense of humor. That's a gift my friend.

Have you tried journaling? It certainly helps....I find. This is a way of expressing thoughts and feelings. Keeping everything "bottled up" is not good.

You are a people person I can tell. It's hard when you are battling sickness emotionally or physically to be isolated from friends, job & family....especially when the friends/family become ill themselves.

You are a beautiful person and there is nobody else just like you. God made you special. I am praying for you right now to be lifted up and encouraged and for God to send you a new, trustworthy friend.

I care.

REPLY

I thank all of you so very much and I am profoundly grateful for your responses. I realized earlier this evening that the biggest obstacle I face is that I have no hope, and as a result whatever condition I have is so unyielding, incurable that I cannot imagine anything beyond today. This causes some despondency not experienced before. It feels as though I attend to all of these medical appointments, facing staggering medical debt and for what reason? As I told my OB/GYN in December, there have been times I wished I had cancer because then I could have hope; hope for treatment, possibly a cure. These doctors I see have no clue what is wrong with me, and while I accept that they are not magicians, none of them are able to give me anything to hold on to. "You are doing a great job staying positive, keep it up." This is all well and good, because in all fairness I think my attitude about this affliction is indeed positive, and perhaps more so if someone else were in my shoes. Having said this, I have never felt hopeless, the word has not existed in my mind until I had to face the reality that there is no solution to my problem no matter how many tests or procedures I undergo. Furthermore, having to live within a community and being shunned but for the sake of losing so much weight is astonishing and yes, disheartening. However, I realize that humanity is lacking everywhere, and life today is vastly different in terms of people wanting to "help" others. My god, I look forward to helping others, and I feel it is some kind of calling for me to give as much of myself to others, what I cannot give to myself.
I stay busy, make beautiful things, help others and try to encourage those like myself. I have been told I am too kind, too sensitive and too selfless. I suppose I took trying to be so unlike my family, I became immune to allowing myself some compassion, if that makes sense.
I have no family, or no family support. I have some very dear friends I have known for decades. Interestingly enough they do not want to listen to me tell them "how I really am", so most of the time I simply tell them I am doing well because I know they do not want to hear the truth. Even if I go so far as to say, "I feel upset or depressed about my future," most of the time my friends say, "Oh no, please don't say that." I cannot share with these friends my fears, the darkness and the loneliness that I feel at times. I understand some people "just can't handle it." My sister is a perfect example, and has told me she cannot support me. I give her a pass because she is in her own dire situation, and I need to support her as best as I can while she deals with her demented husband.
Yes, I move along with humility and grace, but also realize that sometimes having the sorrow I feel might actually be a blessing in some way. My sorrow has made me stronger, has made me a better person, someone I actually like. However, when people I run into say things like, "You look much better now that you are wearing makeup,'" I cannot help responding, "better than what?" Silence.
I know I am doing all the "right" things. However, once I stopped taking care of others, I saw that I was no good at taking care of myself. Even when I had my dog, I always put her needs above my own, simply because I wanted her to be around for a lot longer than she was. At the end of the month, she ate before I did. With my friend Carolyn, I sacrificed my own health to save hers. After taking care of her in January when she was deathly ill with a respiratory infection, and during which time I actually wished for her death, I became sick because I have no immune system. I am not telling all of this to plead for mercy or anything like that, I think the core point is something that has been bothering me for weeks: I will never love again or be loved. Who wants to be around someone who has a chronic illness and who has now developed a weird androgynous figure? I have so much to give, yet no one to give it to but myself, right?
I do plan to shock my neighbors this weekend though, and commence working on a new wood project since I have "permission" to use all of my power tools inside my apartment. Physical work helps me feel a strong sense of accomplishment, so when I fire up my power sander and begin working on a project, I am going to do so with gusto, knowing the noise will be loud, but allowed. These people around me have tried every way to make my life miserable, and I am not going to allow them to take away those things or projects that bring me joy. It is the best I can do, now.
I am beginning to trust the new psychologist, something that has taken time because of the prior experience with her coworker. I have never felt as betrayed as I did when the former one disappeared so suddenly and without any warning. I should have known better when she told me after her surgery that while her doctor did not want her to return to work, she chose me as her "test" client. Go figure.

REPLY
@nemo1

It took a long time to recover from losing my beloved pet. They are pure unconditional love. Their licks are the best medicine.

💛

Jump to this post

Nothing better in my opinion. I have given thought to getting another one, but will not until I know I can give the dog 100 percent, and sadly, I just can't do it right now. I have given thought to fostering a dog, but even that feels overwhelming.

REPLY

I am so sorry you are struggling . It sounds like a lot for anyone to deal with.
I've found on my long journey with chronic illnesses and cancers , that there're times I feel overwhelmed. I discover it is usually related to some change or loss in my life. It sounds like you have a lot of changes happening right now and that would be difficult for anyone to cope with.
I do wonder as well if tritating off the Effexor might be affecting things more dramatically. Perhaps a call to the doctor having you lower your dose, may help give you some direction, and help.
Resilience is falling down and getting back up and you have shown to be very Resilient in your life
But that doesn't mean it isn't hard . Tough things make us feel sad, and even unable to push through.
But you have, and will , because that is who you are.
I pray that you can find someone to talk with now , to help you cope a little right now. Maybe a faith leader, Chaplain at the hospital, or a social worker . Hang in there. You are worth all the effort!

REPLY
@frances007

Nothing better in my opinion. I have given thought to getting another one, but will not until I know I can give the dog 100 percent, and sadly, I just can't do it right now. I have given thought to fostering a dog, but even that feels overwhelming.

Jump to this post

@frances007 I understand...but would fostering - maybe just for a week, if the opportunity exists - may provide a bit of a chance to get outside yourself again, remember what it feels like.

Also seems that - and I have not followed your Effexor journey here - that could have a serious impact on how you are able to cope with all that surrounds, and is inside, you. Is this "titrating down", if I"m using the words accurately, for a hopeful purpose? Maybe there were side effects, and I have not read about them here in your postings yet.

But, what about writing - both here and in a journal-type situation? I'm not good at sticking to things, but I did try it for a while last year at about this time, and was writing up to 3 full 9" x 12" pages in a lined sketchbook-type book, and it did bring me out of my head a bit for the better. But, like I wrote, for me, that is a hard thing to stick with. But if you add in some creative bits - sketches, drawings, doodles, it becomes this really cool compendium of thoughts.

Speaking of creative bits - is there a way I/we can view some of your "dribs and drabs" - not for critiquing, but for the sheer joy of sharing creatively?

Hope to hear more of your thoughts here soon.

REPLY
@brandysparks

@frances007 I understand...but would fostering - maybe just for a week, if the opportunity exists - may provide a bit of a chance to get outside yourself again, remember what it feels like.

Also seems that - and I have not followed your Effexor journey here - that could have a serious impact on how you are able to cope with all that surrounds, and is inside, you. Is this "titrating down", if I"m using the words accurately, for a hopeful purpose? Maybe there were side effects, and I have not read about them here in your postings yet.

But, what about writing - both here and in a journal-type situation? I'm not good at sticking to things, but I did try it for a while last year at about this time, and was writing up to 3 full 9" x 12" pages in a lined sketchbook-type book, and it did bring me out of my head a bit for the better. But, like I wrote, for me, that is a hard thing to stick with. But if you add in some creative bits - sketches, drawings, doodles, it becomes this really cool compendium of thoughts.

Speaking of creative bits - is there a way I/we can view some of your "dribs and drabs" - not for critiquing, but for the sheer joy of sharing creatively?

Hope to hear more of your thoughts here soon.

Jump to this post

Thank you, and of course I will share any "tricks" I have up my sleeve.
I too keep a notebook handy, with the hope of writing a book; afterall, we all have a story. You might want to check out Medium. It costs $5 per month and you have unlimited access to all articles, AND you can submit your own articles if you like. I have submitted two articles, and received a whole five cents for doing so. But I do not do this for the money; however, I have connected with other writers whose stories resonate with me.
Another thing I found helpful and what I started doing, but stopped, is trying to draw one picture every day for 100 days. It does not have to be perfect, but me being me, I had to make each drawing as perfect as I could, which usually ended up lasting hours. I bought a nice sketchbook on Amazon for $7 and I do pick it up from time to time if even to "doodle."

Yes, fostering is something I have been thinking about, but me being me, I imagine I would get overly attached to the dog and want to keep it, something my sister continues to admonish me about, "You cannot get a dog."

In terms of the Effexor, I finally went online to find out why so many thought this drug was awful, and boy was I surprised. Many of the unwanted side effects exactly mirror mine: feeling hot all the time, no appetite, insomnia....So my doctor has ordered Prozac and that way I can taper off of that much easier. Yes, I have learned so much from this platform, a real gift with unexpected surprises.

Following my post yesterday, I had a crying jag that lasted a good two hours. Crying and vacuuming, swearing etc. I am sure my nosy neighbor listened with intent, but I didn't care. It was a form of cleansing, if you will.

In any event, thank you for this message. Check out Medium

REPLY

I understand your need for real communication. I wish I could help in some way. You sound like a kind and sensitive person.

REPLY

I heard in a movie once, "How lucky I am to have known somebody or something that saying goodbye to was so damn awful!"

REPLY
Please sign in or register to post a reply.