Author Topic: Extreme stress and Sjogren's  (Read 991 times)

DeadGirl75

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Extreme stress and Sjogren's
« on: July 31, 2017, 01:45:05 AM »
I wish I could post some positive news, but I do have questions.

My mother was very sick and for the last year, I've been taking care of her. On Wednesday, July 26th. Along with extreme grief, my body has been behaving oddly. I can't even explain it. I am not coping well with this loss. I feel devastated and physically, I feel weird. Can stress cause a flare? I'm not sure. I don't know much of anything right now. I can't see through the pain.
~Shelly

Don't look to the past, there's nothing new there for you.

katie1111

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Re: Extreme stress and Sjogren's
« Reply #1 on: July 31, 2017, 04:13:49 AM »
Can stress cause a flare? ABSOLUTELY!  And taking care of a sick mother is extremely stressful as well as physically demanding.  I remember wondering if I would ever get through it - but I did.  And as time passed, I was and still am grateful that I was able to provide her with the care she deserved.

Katie1111

irish

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Re: Extreme stress and Sjogren's
« Reply #2 on: July 31, 2017, 08:51:12 AM »
I took care of my husband for quite a few years and he passed away a little over 3 years ago. I felt like I had been hit by a truck almost immediately after he died and that feeling lasted about 2 years. I have had one ailment after another since then and know that stress is what has put me in such bad shape with my autoimmune disease.

The stress that goes along with grief is so hard to describe and hard to overcome. There is a fatigue that also goes along with the after the funeral life we live in. Caring for a loved one is extremely taxing and it takes time. If one can avoid any new stress it would help. I have had a lot of additional stress so I feel like I am fighting with both hands tied behind my back at times.

All we can do it to put one foot in front of the other, try to talk so friends or professional about some of the things you have gone through and eat good and get sleep. Time is the healer I think cause the memories become less vivid and don't hurt as much. I don't know the really final answer cause we are all different and experience and react to things differently. Sometimes one day can be different from the day before and we just do the best we can. I hope you feel better as time goes on. If you don't feel "right" it might be wise to go to the doctor as sometimes we need medication for a time to help our body cope with the grief. Irish

DeadGirl75

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Re: Extreme stress and Sjogren's
« Reply #3 on: August 01, 2017, 12:36:50 PM »
She's only been gone a week and I am not coping well. I feel so utterly broken.  My mother was the one person in this world that I knew without a doubt that had my back. A mother’s love is unconditional. That’s something I never fully realized until I had a child of my own. Then it was like the scales fell from my eyes and I appreciated all the sacrifices that she made for me.

Now that she’s gone, I feel this gaping hole in my heart. Sure, I have moments where I’m ok, but I have more when I’m not. I keep thinking about how beautiful she was, how she had the ability to make a friend anywhere, and that she loved to help people.

If I’m honest, I am not coping well with her loss. It’s only four days and it feels like she’s just on vacation and she’ll call me any moment and then it hits me. I’m never going to get that phone call. I’m never going to feel her arms around me, hugging me, telling me she loves me and I lose it all over again. This pain is unlike I’ve ever felt. I lost my grandmother, and I grieved, but it was such a different grief. What I’m feeling is utter devastation. It’s like a wrecking ball has brought down the life that I have built. I am so used to calling her five or six times a day to make sure she’s ok. I’d go over to make sure her medicine was all set for the next two weeks.

I am broken, shattered into a million little pieces and I have no idea how to put them back together. I know that it will take time and that hole that she left behind will remain, but as time goes on, that hole will be filled with the memories that we shared, the love and the bond that, no matter where she is, can never be broken.

I can rest in the knowledge that I was with her to the end like I promised her I would be. I took care of her to the end, just like I promised I would be. I have no regrets because I made sure she was taken care of in life, and in death, I still am. I may feel weak now, but I know this, I am my mother’s daughter and I will survive, just like she taught me to.

Yet, this illness seems to magnify the symptoms. I don't know if it's Sjogren's or depression. It's odd, I don't feel depressed, I just feel shattered. Does that even make sense? I have to go over to her house to go through her things and I just have zero energy. I dread going into her home and not seeing her. I
~Shelly

Don't look to the past, there's nothing new there for you.

lighthouse33

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Re: Extreme stress and Sjogren's
« Reply #4 on: August 02, 2017, 12:27:40 PM »
I am so sorry for your loss.

Mom passed away three weeks ago.  Most of you here, know that I had been caring first for dad since 2010 (he passed in 2015) and mom since 2011.

Watching someone die from COPD and osteoporosis was no picnic.  In fact, it was horrible!  She had the death rattle for two days and she could not catch her breath.  Even with the morphine, Ativan and the stuff that breaks up the mucus, it barely touched it.  I’m not sure I will ever really get over watching two people I love die from respiratory diseases.

Since then, it has been a blur of activity.  Luckily, I had a dear friend who helped me with everything.  Running me to the funeral home, cemetery, florist, helping make phone calls etc.  Since, I have been writing thank you notes, all those post funeral projects.  Meeting with the attorney.  Applying for a credit card in my name, because, our joint credit card was in mom’s name.

Moving furniture around in the apartment, deciding what I want to keep and what will be sold on consignment. 

Currently going through mom’s clothes.  Seeing what fits, and what doesn’t and can be donated to charity for a tax write off.  Again, my friend is helping me with it.

I do feel like I am pushing my body further than what it can do, but, I am the only one here to do these things.

Like you, my body feels weird.  It’s like I’m back to how I used to be pre-diagnosis.  My neuropathy pain is out of control.  Luckily, I am taking naps when it gets to be too much.

I read somewhere online, that for some people grief manifests itself in physical pain.  That may be the case for me. 

I agree about talking to someone.  There are grief support groups online.  My funeral home offers an AfterCare program and Hospice where I am has a grief program also. 




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Carebear

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Re: Extreme stress and Sjogren's
« Reply #5 on: August 02, 2017, 02:39:18 PM »
Shelly and lighthouse,

Please accept my deepest sympathy for the loss of your dear moms.  It is a grief I am well familiar with, unfortunately.

And yes, Shelly, this will likely make your symptoms worse.  As lighthouse said, grief can manifest itself in so many ways.  For me it showed up as a tidal wave of anxiety, fatigue, pain, insomnia, and cognitively I was mess.  I guess looking back, it amplified all my existing symptoms.  And once that cycle began, it was inevitable that I was unable to take care of myself as I once did.  Maintaining the tough regiment of self-care rapidly feel apart.

I can share this now because six months into the loss, I feel I am now turning the corner.  But it takes time, and the support of good people to get through it.  And you need to be gentle with yourself.  Take care, ladies.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

irish

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Re: Extreme stress and Sjogren's
« Reply #6 on: August 03, 2017, 05:16:17 PM »
My condolences to you too lighthouse. I knew you were doing end care with your mom but didn't realize she had passed away.

Shelly, I can relate to some of your feelings. I have lost both parents, both in laws and my hubby and each death affected me differently. Losing my dad was really hard on me cause I was very close to him. I would have these terrible sinking feelings in my stomach that made me feel like I would pass out and never be able to deal with life again.

I also sort of wandered around not being very good at getting anything done. I felt like I didn't have dad "pigeon holed" or in place in heaven. It took about 2 weeks for those feelings to decrease. I think it was part of the grieving and acceptance. When you lose the first parent it is hard but you have one more parent to tend to. When you lose the last parent you become an orphan and that is hard to accept.

I have found that time helps---acceptance comes in time but the sense of loss never goes away nor do I think it ever does. Losing my hubby is really hard as he was my best friend and we had so many memories from years ago when neither of us had so many illnesses. We were both exhausted from the doctoring/hospitalizations by the time he passed away. I could hardly cry cause I had been crying a little every day for years.

Grief is personal. It is what it is for each person. Cry your eyes out or don't. Your body will tell you what to do. Sometimes you will think that you are crazy but you are not. You are grieving. I read a book on grief that explained this philosophy to me and I think it is logical and sensible. I know my kids have thought I acted a little crazy at times and I told them I am not crazy, I am grieving.

It was 3 years now and I don't feel as crazy as I did at first and I am crying a little more lately as the shock has finally worn off and the good memories are coming back. I still feel like he is near at times and it warms my heart. I know I will see him again someday.

Accept your grief but don't let it rule you or ruin you. If things don't go well some days chalk it up to experience and the learning curve. If you find that you are so immersed in grief that life is losing its meaning then it is time to talk with a counselor, minister, an aunt, someone who you can share your hurts and dreams for the future. None of us can make our life like it was or turn back the clock but we can grow in our grief and make our loved one proud. Good luck and hugs. Irish

Nomad

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Re: Extreme stress and Sjogren's
« Reply #7 on: August 03, 2017, 05:51:23 PM »
I believe you said your mom passed a week ago.  First of all, condolences.  A week is a very short amount of time for most things, and barely any time at all for the grieving process to occur.

My mom died at age 49 and it was horrible. We were close. Took me a few years to do better. I went to counseling, but absolutely wish I had gone earlier.

My dad died 5-6 years ago. We did not get along well. I was shocked how much this affected me. I actually got physically ill and developed a bout of Irritable Bowel Syndrome shortly afterward. I did go to counseling and it was helpful.

Bottom line...losing a parent is almost always VERY difficult.  Whether you were close or not, may not matter. And if you were her caretaker, there is a lot more involved.

Seriously consider getting counseling if this is a possibility and you are not doing so already. Some people have to take medication for a little while. STRESS  negatively influences the body. And for those of us with autoimmune illness, it is almost  a definite.

As best as you can, try to be with people who are kind and loving. Give yourself time to grieve. Seek spiritual counseling/guidance if you think it might help. And again, consider counseling to help you as you get through these difficult days.




« Last Edit: August 03, 2017, 05:54:29 PM by Nomad »
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DeadGirl75

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Re: Extreme stress and Sjogren's
« Reply #8 on: August 04, 2017, 12:10:29 AM »
Yes, I'm in therapy. I have anxiety severe enough to require medication and to get my medication, I have to go to therapy. I'm glad I have that.

Every time I think of her, I feel this sinking feeling in my heart and I start to cry. Yes, I was taking care of her and I feel so lost without her. We were very close. When I think of her, I also have this shaking feeling and I can't breathe. I'm not really eating, but I do make sure my son is taken care of. I feel like this is all a bad dream. I just can't wrap my head around the fact that she is not coming back. I feel like I'm a lost little girl looking for my mom and I'm scared. It doesn't feel right that she's not here.

I'm also wanting to hold onto anything she owned. I'm consciously trying to save only the important things. I have a keepsake from the funeral home that has her ashes in it and I will sit there and just talk to her. I even had it in my bed as I slept. (It's all sealed so no chance of spilling) I feel like I'm losing my mind. I've never felt so vulnerable and I'm not used to that.

My biological father hasn't been in my life since I was in middle school. I cut that loss a long time ago.
~Shelly

Don't look to the past, there's nothing new there for you.

irish

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Re: Extreme stress and Sjogren's
« Reply #9 on: August 04, 2017, 05:17:18 AM »
Do you have friends from work or church, etc that you can get together with and maybe have an outing with the kids--go on a picnic, etc? You are grieving and that is understandable cause you lost a very important part of your life..

You need to eat and take fluids so that you do not get ill and end up in the hospital. Also, if you don't take enough nourishment you could get weak and pass out and that would be very hard on your child. Youo know that your Mom would want you to keep on with your life.

I hope that you stay with your counseling and it may be that you will need an antidepressant. Do not be afraid to take one as in times of severe stress our brain chemicals get depleted and need replacement. Get out every day with your child no matter what and chat with people in the library, etc. Just a few words with another person gives us validation that there is a life and it can be good.

If you feel desperate call your therapists hot line or another hot line in the area to ask for assistance. The things you are doing are not weird they are just what a daughter would do when she loses her mom. It is to be expected. You will get through this but prepare yourself along the way to deal with things that could come up. I think your will have some surrogate moms on this site keeping track of you these days. I will keep your in my thoughts and prayers. Irish

quietdynamics

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Re: Extreme stress and Sjogren's
« Reply #10 on: August 04, 2017, 07:19:16 AM »

I can rest in the knowledge that I was with her to the end like I promised her I would be. I took care of her to the end, just like I promised I would be. I have no regrets because I made sure she was taken care of in life, and in death, I still am. I may feel weak now, but I know this, I am my mother’s daughter and I will survive, just like she taught me to.

I went down to go to the Dr. with my mother for test results.. the tests did not say much, but, Mom was not doing well so I stayed. Next thing I was doing Hospice in her home and Mom passed peacefully.
For me it was surreal. Day before Dr. appt we were shopping for an umbrella for her patio table and she had more stamina than me.
Life --> Death is so strange.
But, like you I promised she would be taken care of (in her own home.)

Now you are exhausted, physically, emotionally, through to your soul.
Rest.  Zone in, zone out, zone in. This is normal.

You say you have to go to home and go through Moms' things. Can you take a friend? Try to share good memories.
For a long time I had a sweater of my mothers that I would not wash, it had her perfume on it and it was comforting.

All the things you admire about your mother she gave to you... and you can give to your daughter.
Be gentle to yourself.
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Cheryl

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Re: Extreme stress and Sjogren's
« Reply #11 on: August 05, 2017, 07:33:08 PM »
Shelly,
You have my sympathy, too.  I'm sorry for the raw pain you are going through.   

Yes, stress can affect your health; it has probably been doing so for the entire year you have been your mom's caregiver.  It may also take that long for the stress to subside. 

Don't be hard on yourself; you need to grieve.  You also need rest. You may not have an appetite, but your body needs food (fuel) so that you can take care of your son and your health.

I promise that (in time) this emotional pain will lessen.  You will always miss and love your mom, but you will be able to smile when you think of her.


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Deb 27

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Re: Extreme stress and Sjogren's
« Reply #12 on: August 14, 2017, 12:17:37 PM »
My deepest sympathies on your loss and all the others here who have recently lost their loved ones. My mother was basically my only parent and she died when I was 31. Everything you are describing seems quite normal to me.  Grief  can be very profound.  I hope you have friends or family to help you.  It's  important so that you don't get overwhelmed. I kept a lot of my mother's stuff too. It took me years to get rid of most of it and I still have a lot of her stuff. It's called being sentimental and  I think it's quite normal.

In time you will be grateful for having such a great relationship with your mother and taking good care of her. Just give it time.

Be good to yourself.
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DeadGirl75

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Re: Extreme stress and Sjogren's
« Reply #13 on: September 11, 2017, 06:46:49 PM »
Thank you, everyone. It's been a rough road. It's just been over a month and I found out my stepdad is already dating, he asked for the key to the house and my mother's wedding ring is missing. He's letting his great-niece live there and she is shady. I don't trust her. She moved in the day my mother died and she is a vulture. I wouldn't be surprised if she has my mom's ring. Her room is nearly cleaned out (He's been giving her things away left, right and center...after he told me I could do it.) When I'm done, I'm severing ties with this man. He's raised me, but he is not a good man. I was in the process of calling DSS on him for elder abuse. Who calls someone they "love" a whore and a expletive bitch when they're on their death bed? He's just made this whole process worse. The mere sight of him makes me sick. Thankfully, I don't have much longer to worry about him. My anxiety is through the roof and to make matters worse, my therapist's office can't write scripts for my anxiety meds because their "pharmacological" doctor is gone, so my PCP took over. He reduced my anxiety meds by half. I am just drained. I have lost 31 lbs in six months, but for me, that's good.

Again, thanks for your kind words.
~Shelly

Don't look to the past, there's nothing new there for you.

DERRICKDAVIS2016

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Re: Extreme stress and Sjogren's
« Reply #14 on: October 30, 2017, 08:29:56 PM »
Sure does, I have Complex PTSD also and have to be on medication to help with the anxiety and depression that comes with it.. Sjorgen with Stress or Anxiety can cause me to be bed ridden for a couple days due to i just don't have the energy to even get up and fix meals or bathroom visits... Sometime I need help from my husband to get to the restroom. When the chronic fatigue starts to show signs I make sure i start to get to a place that i can lay flat and allowed to take a nap until i am able to get up on my own. I sorry for your families loss. May you get well soon.