Coping Vs Grieving Vs Dreaming

[imapumpkin]

Haven't been here in a while but I wanted to ask if anyone else has had a similar experience in terms of emotionally coping with POTS/dysautonomia and all the restrictions it puts on your life.

Lately I've been trying really hard not to harp on wondering why I've been dealt a chronic medical condition that has completely changed my life and capabilities in the blink of an eye. I am trying to focus on all I can do to improve my situation and celebrating the little achievements I have...like being able to drive myself to the doctor's office, or be able to run an errand or go for a short walk. I don't want to feel sorry for myself and think of all things I can't do anymore, all the things I planned to do but won't be able to, and the fact that my neurologist told me last month to file for disability meaning she doesn't see this vastly improving in the next few years. I am trying to work in therapy through grieving the life WITHOUT a chronic medical condition that I always thought I would have but now I have to play the hand I've been dealt. Overall I'm doing all I can to proactively confront my POTS problems.

However, there are certain times when I find it particularly difficult to not feel grief for the loss of a normal life. It ebbs and flows obviously and for the most part I think there's a time and place for it and I don't want it to be a constant presence. But I feel it the absolute most when I first wake up after sleeping through the night (I'd say when I wake up in the morning, but the truth is I go to bed very late and sleep into the afternoon). I have always been a very vivid dreamer and have always been able to recall my dreams upon waking up. I suspect that they are even more vivid because I have been on klonopin for a number of years and they make my dreams even more intense. I am wondering if anyone else experiences this: Waking up and feeling sad because I've just had a whole nights worth of very vivid dreams in which I am active, normal, and DON'T HAVE POTS. Then I slowly come to consciousness and I remember oh yeah. I can't do all those things I'm dreaming about...running, going on vacation to Disney World, swimming, doing anything for any amount of time without resting. I wake up and I feel sad because in my dreams, I'M NOT SICK. I wake up and go CRAP. It was just a dream. I don't think of myself as a sick person. I think of myself as a person with a chronic medical condition, and I lived 24 and a half years without any significant physical limitations so it's not who I am, I don't dream that I have these physical limitations that have sprung up since my POTS flared last summer. Does this sound familiar to anyone else?

I told my therapist that this is one of the reasons I enjoy sleeping is because I am not sick in my dreams. She says this is what depressed people do, but the truth is, I don't sleep as a form of escapism, it's just a part of my 24 hour day that I get to feel like I'm not physically inhibited, and I don't sleep to avoid real life. I sleep a lot because I'm very fatigued but never do I wake up and go unnngghh I'm going back to sleep because it's better than this real life POTS filled day. I don't feel depressed. I just feel like I need to work through my feelings about the loss of a potentially full active life. Nobody plans to get any sort of medical condition or illness so I obviously had a life plan that did not include POTS and now I have to chart a different course so I think it's perfectly fair to be sad about new restrictions of my physical activity, my future and all my plans needing to be reworked.

[E Soskis]

You sound normal to me! I try to keep going one day at a time - I don't look too far ahead because, well....I don't want to get depressed! I think a lot of the "fear" comes from too much projection - thinking about how bad the future COULD be.....I decided I prefer to deal with the here and now - not with what MIGHT happen.

Yes - I also grieve the loss of my "old" life. It stinks that I can't do the simple things I used to do - I just refuse to wallow in grief and what used to be. In my past, I took way too much for granted - the one positive thing about this disease is...I have a new appreciation of life and the little things. I have way more empathy for people who have limitations. I have a much greater capacity to tolerate things that used to really bug me. It comes down to realizing what my real priorities are in this life: God, family, friends, and the importance of loving others more than myself. My future comes one day at a time and it is great!

[looneymom]

It sounds like you are accepting your situation and its great that you have a therapist you can talk to. I'm not a POTS patient but I have had the same feelings that you have expressed. I had a full time teaching career that had to come to an end due to my son's POTS condition. His illness has been hard on both of us. It helps to have support from other people and a positive attitude about the whole situation. Although, I admit it stinks to see POTS steal your love ones life away. As a former special education teacher, I thought I understood what it ment to be disabled. I truly understand it's meaning now. Just remember your priorities and take care of yourself. Choose to make your life the best it can be. Set your goals high and strive to reach them. It will be worth the effort.

[HopeSprings]

I'm so impressed with you. I've struggled for years to try and find some peace in all of this and I just find it really difficult. I understand what you're saying about dreams and sleeping. I'm generally not sick in my dreams (though I've had dreams about Doctors telling me they figured out what I have!), but usually I'm my old self and then I wake up to the very disturbing reality that is my life. To be honest, I wake up every morning with a feeling of gloom. It happens right in that groggy moment between sleep and wake. Then I get up -because what other choice is there?- and go through all the horrible symptoms (the crazy racing heart being the most difficult). But after a while things calm down a bit, I feel more lucid and at that point, I feel less gloomy and can carry on. I'll bet this sleep thing is common among people with chronic illness. I've thought about seeing a therapist to help me deal emotionally, but I'm not sure what they would be able to do. Have you found therapy helpful for this? Would you mind sharing any coping strategies that have been suggested to you?

[bebe127]

Ditto to the above responses!

Pumpkin, I can so sympathize with you, it's like you climbed into my head and wrote everything that I've been thinking lately. I too have vivid dreams. I'm not going to go all into all of my experiences, suffice it to say that I know exactly how you feel.

I've put this on a thread before, there is a book that has been very helpful to me; it is http://www.amazon.com/Coping-Chronic-Illness-Migraines-Fibromyalgia/dp/0736927069/ref=sr_1_1?s=books&ie=UTF8&qid=1365347727&sr=1-1&keywords=coping+with+chronic+illness They author's explain so much about the process of grief people with chronic illness go through. It is also a sort of workbook as the authors have many types of activities that we can do on our own to promote awareness of our individual situations and where we stand in this process. It has helped me tremendously.

This is not to say that I don't go through daily bouts of depression and or feelings of despair, guilt and the like. It is process. Where there are valleys, there are always peaks. We need to try to focus on our next peak and do what we can to reach it, even if it is one small step at a time. Like Machiavelli says in the book The Prince, "Let him (prince) act like the clever archers who, designing to hit the mark which yet appears too far distant, and knowing the limits to which the strength of their bow attains, take aim much higher than the mark, not to reach by their strength or arrow to so great a height, but to be able with the aid of so high an aim to hit the mark they wish to reach."

May your days be bright and your aim high

Bebe

[imapumpkin]

Thanks for the responses!

Naomi - I am actually in the process of changing therapists. I have been seeing the same therapist for years and I don't feel like I'm making any progress anymore (she attributes almost everything to my anxiety and can't really grasp why i'm hyperaware and concerned with my health) and my therapist has been having a hard time helping me with cope with a chronic illness, constantly trying to convince me that I need "perspective" and I can't constantly have someone tell me "well at least you don't have cancer". As far as coping strategies, my psychiatrist got me started last summer with guided deep relaxation meditation CDs and there are some really helpful ones on youtube. They have helped me a lot with focusing my energy on the present and on being positive and they helped me cope with dealing with anxiety prior to my heart surgery in Jan. Another thing that was helpful was when someone told me to stop thinking of myself as a patient. It's hard because there are so many symptoms you can't help but feel like being sick takes up so much of your energy but I'm trying to focus on the possibility of maybe improving someday as something to look forward to.

bebe - thanks for the book recommendation I will definitely check it out! and love the machiavelli reference.

[spinner]

Im not sure theres an answer. Dont we alternate between mental states, fear, giving ourself

pep talks, worrying that other people dont believe us, having doctors tell us we have anxiety,

wondering if we can work full time or the emotion that a cure is right around the corner ???

I dont really have any expectations. I let them come and go but i try to stay on course.

Theres danger in staying in any one thought pattern for too long.

Escaping (dreaming) is ok for a time but it can become destructive.

So can "coping".

[bebe127]

Pumpkin,

Naomi - I am actually in the process of changing therapists. I have been seeing the same therapist for years and I don't feel like I'm making any progress anymore (she attributes almost everything to my anxiety and can't really grasp why i'm hyperaware and concerned with my health) and my therapist has been having a hard time helping me with cope with a chronic illness, constantly trying to convince me that I need "perspective" and I can't constantly have someone tell me "well at least you don't have cancer".

I too saw a therapist for a short time and she as well focused on anxiety. I didn't see here for long at all. One of the good things that came out of it was her having me get the book: http://www.amazon.com/Anxiety-Phobia-Workbook-Fourth-Edition/dp/1572244135/ref=sr_1_2?ie=UTF8&qid=1365420709&sr=8-2&keywords=the+anxiety+and+phobia+workbook Even though I don't have an anxiety disorder or phobias, believe it or not, it was still quite helpful to me. I gives lots of information and also gives pointers on how to deal with anxiety when it does occur. While I don't have an anxiety disorder and I believe that my anxiety comes from my whacked out ANS, I think that the strategies are helpful either way.

I think I would like to try therapy again, but I would need to find one that helps one deal with chronic illness, not the symptoms per se. I'm sure there's got to be someone out there that does that specifically, the problem is finding the right person. I get tired too of hearing people say that I need "perspective". It's like, enough already, I just want someone to tell me how to deal with the day to day things concerning my illness or just someone that understands my situation (perhaps gone through/going through having a chronic illness) that can just listen with a few mhhm's.

Living with chronic illness and all its ups and downs can really wreak havoc on us and our families. I really hope you find some answers. Best of luck to you.

Bebe