Grief?

[jenglynn]

I have a touchy subject to bring up... and I REALLY want to apologize in advance if I offend any of you by bringing this up at all. I know there are many of us on this forum who have lost family members close to us (myself included) and most of us know about the 5 stages of grief. I am not at all trying to compare my illness, or anyone else's to the tragedy of a death, so I just wanted to express that first. I guess prior to this thought, I had never really thought of grieving in really any other way.

That said, I was visited by a counselor in Mayo who discussed this with me and I wondered if any of you felt the same. He said, that when we are first diagnosed with a chronic illness or illnesses in my case that will most likely be with you for the rest of your life, grief is a natural feeling. Realizing that life would never be exactly the same is a hard reality. He asked me a lot about my "old" life. Well.. I am married to a husband I love. I have 6 children, 4 of them involved in time consuming sports (2 boys in hockey). I was a Girl Scout Leader. I was a CASA (court appointed special advocate- meaning that when a child is placed in CPS I become their "voice" in court to try to decide best ultimate placement which involves weekly visits with the child, family (foster or natural), and communication with teachers, etc- so quite a commitment). I am a full time grad school student (I am still doing that because I am in an online program and I've struggled in the last month or two as my illness has progressed but I am still hanging in there). Plus church and teaching a Marriage Enrichment course... I was a busy girl... Well.... this began in April and by the time Sept. was here I was in a downhill spiral that I couldn't control any more. Couldn't work. By November I had to give up everything and was bed ridden most of the time. My syncope was constant and I was so unstable.

So on to grief...have any of you gone through that? Denial, anger, bargaining, depression and then acceptance. I find myself going through this- not as a seamless transition from one to the next but back and forth and sometimes feeling more than one at a time. I feel like I am "grieving" my formal self. I am having a hard time not denying that this is happened to me. I am struggling with anger. I feel depressed at time. The therapist told me that it was natural to feel like this but I wasn't even prepared to come to terms with the diagnosis that I hadn't even really received yet- let alone ready to start "healing". He also said another thing that has stuck with me.... He said that I had lost complete trust and faith in my body and that I felt betrayed by it. I had never thought of it in those terms before but I realized that he was right. I did feel like I didn't trust my body and all and maybe a little betrayed. I have always taken care of myself. No drugs, smoking, drinking... stayed in shape... and all of a sudden my whole life has changed. Sometimes I am in denial and other times I am angry.. and sometimes I am depressed. I KNOW I need to move past this to heal and make terms with my new life and make the adaptions that I need to make my life my own again.

I just wondered if anyone feels this way or HAS felt this way and how they moved beyond it. I have basically been in the hospital from Thanksgiving until New Years Eve and now that I am home it is an adjustment. I know it takes time and that I need to give that to myself and my family. I try to so hard at times to count my blessings and keep thoughts positives but there are moments that I just break into my pity party. I guess tonight is one of those nights. Thanks anyone if you have any insight how you have started your lives over.

Jen

[brethor9]

Hi Jen

YES YES YES!!!! I have totally been there and I am still trying to get over losing myself. It is a grieving process but the sad thing I find is that nobody is grieving with me. Its like I died and nobody realizes it.....silly I know! Its life as usual for everyone else and honestly that makes me even sadder sometimes....and angry. Its not fair that while I struggle everyday to do the simplest things that my friends and family are whining about having the latest flu bug. I was a real go getter, incredibly athletic before getting this stupid illness and now I am lucky to walk around the block .....I like you go through phases of grieving...most days I can get by but Christmas was evil...I just couldnt enjoy it...too sick and that made me so angry! (and everyone saying how good you look while you feel you are dying inside....arrrgh!)...I am in the midst of a relapse and just get so tired with the back and forth of this illness and get tired of dealing with doctors who dont know enough about to treat it. Thats my vent!

NOW....after the pity party and tears I pick myself up again and get on with living this new altered life. Its all about perspective.....it is true that this is a horrible unpredictable illness and it has turned my world completely upside down....but it could be worse....its not life threatening....I still have my wits about me most days ....I have my friends who are great support.....my wonderful husband....and my beautiful autistic son who is my inspiration (his world is far more difficult to navigate than mine). Watching him puts me in check .....its normal to feel what you are feeling Jen....we are young and never think that we are suddenly going to get hit with some rare illness that cant be cured or barely treated.....but it will get better I promise! Knowledge is power and helps so much with the coping. The more I learn about this illness through research, doctors and the wonderful people on this forum the better I can deal with it and not be so afraid and isolated. It has been a blessing! So be kind to yourself, try to keep it in perspective, learn to appreciate the little things again and never give up on getting better! and if you need to cry and be angry...go ahead! just my 2 cents! Hugs

Bren

[jenglynn]

Bren,

THANK YOU for your perspective. Sometimes I think about that... it isn't going to kill me. I think of people with cancer or other illnesses and feel guilt to complain at all. But at least with THOSE diseases people understand (not that I am comparing my illness to cancer) but so many people just don't get it. And one of my pet peeves is when people tell me how "much better" I look.... when I feel just awful. It has been a long time since I have looked even halfway decent but when someone sees me and they think that I look even a little bit better they are suggesting that I must be better and "cured."

My stages right now seem to go between denial, anger, depression, guilt and then happy thoughts and lots of blessing counting. I think that the attitude adjustment is a daily battle and now that I am aware of it I can control it better. And I have a long way to go before I can trust my body again. How can I? I never know if I stand up if I will stay conscious or not.

Thanks again!!! I am glad that I am not alone.

[ramakentesh]

Completely! You keep cycling through the cycles of grief because you improve and then relapse or fluctuate.

This holidays I had finally planned to relax and unwind after having improved well for nearly two years. Pots had other plans for me

[juliegee]

So True. I've been through the stages of grief for both myself and my son. As hard as it was to go through for myself; it was unbearably difficult to see my child go through this & have to come to terms with the idea that he may never enjoy the fullness of life that my husband and I had originally hoped for him.

I hope it's OK to share, Here's a re-print of an article I wrote for the DINET Newsletter last Winter. Michelle Sawicki (site founder) actually came up with the idea.

New Year/New You

Accepting Your New Normal

Anyone living with dysautonomia knows that there is a certain “coming to terms” with your previously held idea of what you thought your life would be like. No one plans to spend their life struggling with bizarre, seemingly unrelated health symptoms, that change day-to-day, sometimes hour-to-hour; symptoms that even render some patients homebound on a temporary or even permanent basis. For too many, this is the reality of living with an autonomic dysfunction.

Psychologists have come to realize that patients living with chronic illness, like dysautonomia, move through stages very similar to those of patients facing a terminal illness. Elizabeth Kubler Ross’s groundbreaking book, On Death and Dying (1969), revealed the five stages of grieving. Moving from what you thought your life would be to what is actually is- is a process. The new year is a perfect time to take stock of where you are in that dynamic.

-Denial Stage: This is the initial paralysis upon hearing the bad news. For many with dysautonomia, this stage is usually quite drawn out. Initially when symptoms strike, we assume we will be cured. Ultimately, many of us slowly come to realize that a cure may not be possible. We may have to learn to manage and live with our illness. Our lives will NOT be what we imagined.This is understandably a shocking realization.

This stage can become problematic, however, when one stops here. I have a family member, with dysautonomia, who is stuck in the Denial Stage. He’s become a reclusive eccentric. He still works, but only in the middle of the night, when he feels best. (Luckily, he’s been able to create a career where this is possible.) He rarely wakes before late afternoon. He totally neglects his family. He’s seen an electrophysiologist, received a DX, but never fully allowed himself to come to terms with his illness. He tried his medication once, didn’t care for HOW it made him feel, so he pretends he’s fine. He doesn’t explain his absence at any family/school functions. That’s just who he is- a modern day ”vampire” living among us, but rarely seen. He works to avoid dealing with his reality.

-Anger Stage: This stage usually occurs after the Denial Stage. Patients often release frustrated outpourings of bottled-up emotions, furious that they have to deal with a life changing illness on a daily basis. On the DINET forum, we often see members very angry with their doctors, family members, or significant others. Keep in mind that this is a healthy, normal stage in the grieving process. It’s important to safely work through this understanable anger and fight any cultural taboos against feeling/expressing anger. No one plans to live with dysautonomia. Your life is interrupted. Anger is OK and certainly justifiable. Getting stuck in this mode, however, is not healthy. To patients perennially in this stage, Dr. Kubler Ross was fond of saying: “Learn to get in touch with the silence within yourself and know that everything in this life has a purpose, there are no mistakes, no coincidences, all events are blessings given to us to learn from."

-Bargaining Stage: This stage usually occurs after the patient has moved through the first two. It is often a personal and internal dialogue with one’s creator. In our most private moments, we might say, “If you cure me, God, I will give ALL of my money towards finding a cure for dysautonomia.” The patient reaches out to the universe in vain for a way out.

-Depression Stage: Many living with chronic illness are all too familiar with this stage. It is a normal part of grieving our lost lives, but it feels awful. Patients at this stage can only see the losses associated with chronic illness. It is hard to move through your normal routine without feeling very dark and heavy. It is so important to recognize this step for what it is: an important stage towards acceptance. If you are worried you are stuck in this stage, ask yourself if you can still find pleasure in things that once made you happy. If the answer is no, don’t hesitate to reach out for help.

Other signs of a more chronic depression include: trouble sleeping, sleeping an extraordinary amount, difficulty eating, or eating too much. Since symptoms of dysautonomia often overlap with those of depression, it is a good idea to seek professional help if you are unsure. An antidepressant (sometimes temporarily) can help one move beyond this stage AND can often improve symptoms of an autonomic dysfunction.

-Acceptance Stage: At this point, the patient has typically progressed through the previous stages and begins finding a “new normal.” One sign of this is when they begin seeking realistic solutions to their daily symptoms. An example can come in the form of a simple lifestyle change. One forum member recently commented, “I notice I feel better if I shower in the evenings before I go to bed. Not having to bathe in the morning, gives me more energy to get through my day.” These small pragmatic steps are the beginning of truly accepting your new reality.

Once you’ve begun to accept your illness as your “new normal,” you can truly find happiness again Most likely, you are not living the life you thought you’d have, but an equally glorious life; a life in which you are grateful for small moments of symptom relief/control; a life in which you have greater empathy towards others’ struggles. Patients at this stage are often described as having a bigger perspective. They’ve come to terms with their illness, found lifestyle solutions, and moved forward in peace. Dr. Kubler Ross contended that living with any illness could be seen as a gift. "It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had."

Do you recognize yourself in any of these stages? Are you worried that you might be stuck in one stage or another? Are you repeatedly cycling between two stages and not moving forward. Recognizing exactly where you are- is the first step towards acceptance. Dr. Kubler Ross noted that patients move through these stages in their own time, not all patients move through every stage, and the stages are not necessarily in order. We all ultimately move towards wholeness, peace, and acceptance when we are ready.

"People are like stained-glass windows,” according to Dr. Kubler-Ross. “They sparkle and shine when the sun is out, but when the darkness sets in… their true beauty is revealed only if there is light from within."

As this new year begins, and you consider making yet another resolution, instead of planning to lose/gain 5lbs, clean your closets, or wash your windows; how about working on finding your inner light instead? Use your illness as an opportunity to shine your light of greater understanding, acceptance & peace.

[GingerA]

I absolutely understand and feel this way. I have days that I am in denial an think that I can just go back to living my live the way I once did. Or I get on this "I'm going to show everybody that I can still do that!" kick. The price is always a crash. Then anger followed by depression. The feelings of the cycle seem to lessen slowly until someone from "my past life" will say "Aren't you feeling better yet?" or some doctor will say "You will be better in a few months." Then everything starts over!

[Katybug]

Every day for 4 years now. But its not as bad as it used to be and I allow myself a little grief as long as I don't dwell in it.

[HopeSprings]

Oh my goodness, this post is perfect timing. Jen - you expressed it all so beautifully. I personally am mostly stuck in denial - though I go through other emotions, I keep going back to... there has to be a way out of this. However, with each disappointment, depression inevitably follows and I think I'm slowly beginning to realize that what might be needed is acceptance. It's just so darn hard to do.

Bren - I can relate to so much of what you wrote. Julie - thanks for posting that - was helpful for me to read. I might even have to print it out.

[MightyMouse]

@Mac's Mom, it's fine to reprint it here on DINET. If reprinting other places, you'd need permission.

[Chaos]

I can SOOOO relate to what you wrote Jenglynn and Bren. I think there is definitely a grieving process we go thru with being given a "chronic illness" label. I think it may be even harder for us in some ways because we DO have times of improvement where we can get our hopes up that this time maybe we really have beat it and we can go back to the way we were. Then we flare again and it's almost even harder to deal with having the rug pulled out from under you yet again.

I was the same way....extremely busy, never smoked, drank or did drugs. I loved to exercise, dance, hike, taught yoga etc etc etc.... and now I'm excited when I feel well enough to return the grocery cart to the rack in the parking lot! Your perspective definitely changes with this diagnosis. Ironically I went thru the "can't trust my body" stage years ago when I kept having weird symptoms that never could be diagnosed as anything other than "you're just weird". That was long before I ever heard of anything like POTS.

I read a lot about grief when my mom was dying of cancer years ago. I learned about stages of greiving and Kubler-Ross's work in school as well. I think so much of our life really is a matter of the attitude we bring to it and I truly do try to stay focused on the MANY MANY blessings in my life. But on my more cynical days I remember a story I heard about E.K R when she'd had a stroke and had permanent disabilities from it. Someone (reportedly) asked her how she was dealing with the grieving process and if her work was helping her thru the process...to which she (reportedly) said...That's all BS!!! It's no help at all!! LOL

Hope I don't offend anyone with that story. Like I said...on my cynical days I have to laugh with my black sense of humor or I just want to break down and sob for all I've lost in the life I used to have.

[ramakentesh]

I found this article about another condition quite useful also for POTS:

http://www.freewebs.com/myastheniagravis/research_and_reality.htm

[anaphylaxing]

I feel like you took the thoughts out of my head. Going from busy, active, productive to SICK. I can't let go of who I used to be. I LOVED who I used to be and was so happy and this is ****. It is SO hard. Each day is SO hard. I think the rarity and misunderstanding of the conditions makes it worse because we don't know exactly what we are facing or accepting.

I try to do little things like, shower, brush my hair (didn't for months), smile (that's a really hard one), as daily efforts to avoid constant depression

Thanks for sharing.

[Chaos]

Nice link Rama. The apparent contradiction between Bullet #1 and #4 is what I struggle with. In #1 they say 'those who accept their illness quickly and turn their attention to healing often do better." But then in #4 they state "those who refuse to think of themselves as sick...." Doesn't refusing to think of yourself as sick seem like DENIAL and not accepting your illness? That is what I have a hard time with...that line between acceptance and denial.

[lgtaylor100]

This came at a good time for me too. This is exactly what I am feeling. I think I have been in "denial" more than anything else. Every night when I feel a tad better I think I will wake up in the morning and be okay. This of course sets me up for failure because I am not okay. I think I could move toward acceptance a little easier if other people ( family and friends) understood what I am going through and how serious and debilitating this illness is but because they don't, when in the company of others I "pretend" that I am okay. I, too, have a hard time in that line between acceptance and denial.

When I have a really bad day, depression sets in. My whole life has changed because of this illness, I had a rich full life and now I spend most of it on the sofa. There really is no one else that completely understands except for those on this forum and I am grateful that this forum exists.

Lynne

[kmichaelson]

I'm so glad this was posted! First of all, jenglynn, I'm so sorry for everything you've been going through lately! I've followed your posts and I know it's been a horribly difficult time for you. I completely feel grief, anger, and despair over having this stupid, unpredictable, baffling illness! More than anything, I feel isolated because I'm living in a new city where I don't know a lot of people, and now that I'm leaving my job, I don't see the friends that I made at work. It's very depressing for me, but I'm so lucky to have a wonderful husband and (for the most part) a supportive family.

Nice link Rama. The apparent contradiction between Bullet #1 and #4 is what I struggle with. In #1 they say 'those who accept their illness quickly and turn their attention to healing often do better." But then in #4 they state "those who refuse to think of themselves as sick...." Doesn't refusing to think of yourself as sick seem like DENIAL and not accepting your illness? That is what I have a hard time with...that line between acceptance and denial.

That contradiction is my biggest struggle as well! I feel like I'm "giving up" if I accept that I'm sick and stop fighting it, yet at the same time I feel like I'm wasting my energy and fighting a losing battle if I don't just accept my limitations. I've been trying to change my thinking lately to where I accept that there are things I cannot do any longer (or right now at least), but I try to focus on the things that I still CAN do and appreciate those. Of course, those things seem very few and far between sometimes, and it's much easier said than done to change the way I think.

[lissy]

I have been through the stages multiply times and I have this voice is the back of my head: I will be healthy ,I will have a normal life. I cannot accept this illness is that considered denial? I don't know, I have heard if you believe something and can visualize it , it can happen:)

I guess we will see.

Lissy:)

[targs66]

These posts are very timely for me, too. Maybe it's something to do with the expectations that the holidays bring - that we'll be able to experience holidays in the same way as other people, or in the same way that we used to experience them, whether that was good or bad.

I agree that it's so hard to decide how to deal with this illness, as you have no idea what each day will bring. On days where I'm marginally functional, I feel some optimism for a future that, while far more limited than my "previous" life, is bearable and includes moments of joy. Then I have a physical setback, and all of those hopes are destroyed -- and yet they seemed so little to hope for anyways!

Through all those ups and downs, however, I do cling to hope that there will finally be some recognition of this illness and finally, some progress made in treating it.

[potsgirl]

I can also relate 100% to the grieving process. It's gotten better with time, because when I finally realized that I probably would never be able to return to my old job, which defined so much of who I am, I was angry and depressed for over a year. That was the hardest thing for me, along with how dysautonomia basically cut off most of my social life and activities I used to enjoy. It's still hard, but it's gotten better. Especially when I try to focus on the positive things that are still in my life, and am hopeful that things will one day get better again. I have to be grateful, because I know things could be so much worse. Watching my fiance struggle with cancer two years ago helped me put things in a better perspective.

Thank you all for being here.

[peregrine]

Grief has been a big thing for me lately. I look at the last few months' episodes of depression and - counter to my usual bipolar pattern - they are all related to dysautonomia. I tend to waver back and forth between anger, depression, and acceptance. Many days I find I am able to accept the changes in my body, and - more importantly - the changes in my life. I can deal with a lot in my body if my activities of living aren't restricted, but that's not so true any more. But many days I get depressed - why can I not stand up and dance at concerts? Why can I never be truly independent or travel alone again? Why can't I drive or ride a bicycle - will I be reliant on public transport for the rest of my life? Will I be able to work after grad school? What will happen if my partner walks out on me (due to the dysautonomia, and yes, we're in couples counseling as a result) - will I be able to live alone? What will I do to as an annual "mood renewal" ritual, since backpacking seems like not such a good idea and that was the thing that kept my mood stable for the rest of the year?

And then I get angry, because it seems so darned unfair - especially because I finally got used to having a messy brain and painful joints and high risk of breast cancer and figured that was the worst of things and got some perspective. But then my body got this new thing and it's been really tough coping. Strangely I am not angry for taking the Cymbalta, which triggered the dysautonomia, because it improved my joint pain a lot and it's in the past anyways. I don't believe in karma (although I do get really pissed when people tell me my health problems are karma!) or fate, but it does seem unfair somehow, even though I know life isn't unfair.

I think acceptance would be a lot easier (and depression and anger lower) if I knew what was going on, had a path towards treatment of any sort, had a stable place with a set of accommodations that made working easier (I'm lucky I can work, although if I weren't in grad school with an amazingly flexible schedule I'm not sure how true that would still be), etc. As it is I'm still waiting for answers of any sort (even "we're not sure but try this thing"), and that's been really hard. I feel out of control, and that makes me angry at the system (both primary care doc and I are pissed that it took Neurology 3 months to schedule an appointment - just schedule, not actually wait to see someone!), and depressed about my future, etc.

Thanks for bringing this up, and being here - all of you. It took me a while to respond to this because it's a vulnerable question, but I'm super glad that it got brought up, because grief is definitely the right word. To Jen: I went through most of the stages of grief when I lost my mom at 15 to cancer, and while death of a loved one is certainly different, I'm glad you were willing to bring it up regardless - no offense at all. Sounds like a lot of us are going through it.