Feeling Guilty About Not Getting Better

[summer]

Does anyone else here ever feel guilty about not getting better? Sometimes I just feel like so many people have been so supportive to me, and tried so hard to help me get through this illness, but I don't seem to be doing the "getting through" part.

My doctor has followed me and educated himself, and tried different treatments. My husband has done more at home, and shouldered the financial responsibilities alone. My parents and siblings have been understanding and tried not to expect too much of me at family occassions, etc. My employer has waited patiently for me, and has told me they will find a place for me when I can return. I really have a wonderful support system for which I am SO thankful.

I just feel like I'm letting everyone down, because I'm not better. I have always been a person who was able to meet the expectations that people had for me, but I just can't seem to do it this time. Sometimes I even find myself telling people that I am doing better, when maybe over all, I'm not that much better. Maybe I'm trying to talk myself into it.

Just wondering if anyone else ever feels like this.

Summer

[potsgirl]

Hi Summer~

How long have you been ill? I've been sick for almost three years, and while I keep hoping I'll get better, I seem to slowly be getting worse. It's incredibly frustrating to not see improvement and to have to keep missing out on work and social events - a "normal" life that I used to take for granted. I can definitely relate to sometimes feeling guilty when there's yet another dinner or show that I can't attend!

I try to get out of this funk when I get into it, since the negativity doesn't make me feel any better, but hey, we're human, and bond to all of those emotions - anger, depression, guilt - that most of us feel from one time to another. I try to focus on something positive I've done during the day, even if it's just getting a bathroom cleaned.

Cheers,

Jana

[tinkerbella]

I DON'T FEEL GUILTY, I feel at times frustrated, and lonely being alone in a big house alone waiting for times to be with loved ones.I have learned to accept that others have lives also. I must not make them feel guilty that they are not here 24/7 and enjoy very moment I do have with them. Part of my illness has been a gift, as I'm a different person because of it. I reach out to others easily and want to be an listening ear or offer help in whatever way I'm able to.

This prayer has helped when I might feel stuck as it gives me great comfort.

The Serenity Prayer

The full text of the original "Serenity Prayer" written by Reinhold Niebuhr (1892-1971)

GOD, grant me the serenity

to accept the things

I cannot change,

Courage to change the

things I can, and the

wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardship as the

pathway to peace.

Taking, as He did, this

sinful world as it is,

not as I would have it.

Trusting that He will make

all things right if I

surrender to His Will;

That I may be reasonably happy

in this life, and supremely

happy with Him forever in

the next.

Amen

Bellamia~

[toddm1960]

Don't feel guilty, we're all in the same boat. Stay positive, and enjoy every good day, or hour and when those are over just know that another one in on the way.

[lieze]

I find myself saying better too when people ask me how I am and then I just feel like shrinking when I have symptoms again and realize I'm not really better. I've modified my life style a lot and that is how I am able to do what I am-what is a good reply when someone asks?

I'm trying to figure that one out.

lieze

[summer]

Jana, Bellamia, toddm, and lieze,

Thank you all for your replies. Your encouragement really does help.

You are so right, Jana, that the negativity only makes things worse. Generally, I am a positive person, but once in a while... it gets to me. I am usually optimistic that I am going to improve, and that's why I wonder if sometimes I am trying to convince myself that I have. Then, on days like this, it's like reality hits a bit and I realize that I'm not that much better. I'm coming up to my 3 year "POTS anniversary", and I guess I'm not where I hoped I would be.

Bella, you are wise to point out how illness can bring positive changes in our lives, I know this is true for me too. Thanks for the prayer. I had heard part of it before, but never the whole thing. It really is lovely.

Todd, there are good days and I believe there are more of them than there were 2 years ago. I am thankful for these.

Lieze, It would be good to know how to answer people honestly when they genuninely ask how I am. I want to be truthful, but hate to seem like I'm complaining or or maybe seem like I don't want to feel better. On the other hand, you are right that it's not a good idea to say 'better'... and the next thing we know, we're really not.

Summer

[tinkerbella]

Summer

I often reflect back to jr. High School and we had to read, "A Tale of Two Cities," and what stuck in my mind was there were a number of people crossing a bridge if I'm even correct and the bridge collapsed. and they died. Then it went on to figure out why those people were chosen to be there on the bridge at that time at that moment. That's how I feel about all of us here dealing with our dysautonomia together. Why were we given this gift or problem of an illness. It is all how you look at it. When people ask me how I am, I tell them and do my pots 101 ed speech, because how else can we make others aware of an illness that when you walk in an ER the Doc in the ER shakes his head. We are all here to make a difference one by one, till one day everyone knows what dysautonomia is as we are a tale of the world right here on the forum.

One year ago my children did not want to talk about it, as they were scared. Now they know how serious my case is. We enjoy what we can and I finally got my daughter to talk about end of life matters. We have come a long, long, long way. I try to live each day like it is my last as we are all hanging by a thread and can be taken out in a second even if we are well.

I hope this makes sense to all of you as I type from my bed with my dog snuggled close waiting for my nurse to come and check in on me. My neighbors are playing music loud having a party outside this is the first of the many they will have now that the good weather is here. I wish I could dance, but I'm thankful that I can hear the music and know all of you are here if i need you any time at all.

blessings~

Bellamia~

[firewatcher]

Sometimes I do feel guilty: when I look at the yard, when I see my husband mopping the floors, when I hear about all the other stuff outside of school that my kids could be doing...

I also feel frustrated: when I can't do what I used to, when I see anyone jogging on the side of the road, when I have a physical setback...

Then there is anger: when ignorant doctors say there is nothing wrong (which is almost never now!), when friends tell me I should just push through it (which also doesn't happen anymore,) when I think about what I could be doing...

But there is also gratitude: when my husband does mop the floor, when my doctors ask how my POTS is doing, when my friends plan events so that I CAN attend, when I come on the forum and get support...

It takes a while for acceptance, and it is not a constant thing. Some days I feel better and do to much. But if I look back on where I was when I got my dx and now, I AM truly doing better...it just doesn't feel that way. My body may not have changed, but my attitude has. I've had to let some air out of my tires to get under this bridge.

[toddm1960]

Bows to Firewatcher.......that's exactly it, like the DINET newsletter said adjusting to the new normal.

[futurehope]

Lieze,

I find myself saying better too when people ask me how I am and then I just feel like shrinking when I have symptoms again and realize I'm not really better. I've modified my life style a lot and that is how I am able to do what I am-what is a good reply when someone asks?

I'm trying to figure that one out.

For me, I do not care to divulge every difficulty I face to everyone that asks. I've encouraged most people NOT to ask by always saying, "I'm fine." So, I've really put most people "out of the habit" of asking "how are you?". I prefer not discussing it. I enjoy "ignoring" my ill health, and thinking about other people instead. My preference.

That being said, if I were especially in need of prayer for a difficult situation that is not part of my "new normal", I would then discuss it or mention it.

But, on a routine basis, with my "normal" ups and downs, I'm mum. Not worth discussing and I discourage people from asking.

BTW, there's no need to say "better" if the truth is "I'm the same." Just answer, "The same" "How are you?"

[Chaos]

[ I've had to let some air out of my tires to get under this bridge.

Love it! Good way of looking at it.

I try not to spend much time feeling guilty about not getting better, but I certainly haven't gotten past the being FRUSTRATED part of all of this. I do feel bad about how much I have to let slide these days and how much my husband has had to pick up to help make up for my decreased functioning. As Firewatcher noted though, I try to focus on being grateful that I have such a supportive and helpful spouse and that I've improved as much as I have. Also, I'm grateful that even though there isn't currently a cure, there is at least SOME information about this whole process and that at least I'm not being relegated to some assylum for being crazy. And, although they aren't a cure, I am grateful that there are at least some meds that seem to help mediate the symptoms somewhat.

As others have noted, it is hard when people ask how you are doing. I usually say "fine" or "about the same" and then quickly change the subject to something related to them. Or if I'm having a bad day and can't truly say "fine" then I tend to just ignore it and move on to asking them about their situation. I have been tempted to start using my dad's "line" which was always "I just couldn't stand it if I was doing any better." That was the one he stuck with even when he was dying of cancer.

[ladyt]

hi..

i think many whit cronic illneses somthimes can feel guilty about being ill/ not getting better.. is somthing i am strugling whit my self time to time.. I do feel I acsept this illnes better now, but still I have a long way to go.. I resent the fact that I dont have any real help from docs... that I dont know why i have this stuff.. Not knowing is so hard.. And i feel guilty about my boyfriend having so much to do because of me.. i used to feel guilty about it towards my family and inlaws.. i dont any more..

I have a lot of conflicting felings somthimes.. Like I know I am worth as much as any person, i know i can contribute etc, but at the same time I can feel low selfesteem about it all.. Like why am i still sick after all this years whit positive thinking and trying always to do my best etc..

its the luck of the draw i gess.. cronic illes u have to live whit, u cant winn a war against it.. And u have to acsept that that others will not understand.. And be gratefull for the people that try...

And be happy and enjoy all u can, and dont feel bad about needing to griev somethime...

[smiles]

I too occasionally feel guilty. Mostly it is when I see my family making so many sacrifices for me when I am really sick and stuck in bed. When I'm not thinking real clearly I tend to fall back into thinking that it my fault they all have to care for me. I try to think positive most of the time and have come so far with accepting this disease. My family says they don't mind caring for me and they don't complain about it, which helps me deal with all this better. Guilt is not from God so I know I shouldn't accept it as a regular thought--but sometimes it slips in before I realize it. Then I have to tell myself how lucky I am to have such a great family. It is not our fault when we have a flare up or just a physically miserable day. Being so sick can play with out emotions. I struggle with the unpredictabiliity of this disease and feel bad when I crash and my familly has to change their plans because of me. But I would do the same for them. We love each other and help each other out. That is what families are for. Therefore, guilt is no longer a regular part of my life. Jesus helps me have strength to get thru all this fairly sanely.

Good luck on your journey thru the maze of dysauotonomia.

Love, Smiles

ps. I tend to tell people that I have good days and bad days. That is the truth but I am not complaining to them, It is general enough statement and if they want more info they will ask me.

[mountain girl]

I don't think I feel guilty necessarily, but still frustrated-YES. I always said I was not really a social person, because before pots, I worked alot of hours and when I wasn't working there was always things I needed to do just to run a household. I never even knew how to use a computer before pots partly because I couldn't sit still long enough. Now that I am not working near as much and not able to be on the go doing something all the time, I almost feel bored. I feel somewhat "bad" that I don't feel like doing anything much. I am motivated to go to work because we do count on my income, and have already had to learn to live on less. I gave up my full time position two years ago, and part time people are not guarenteed any certain amount of hours, so during the week when my husband is at work the days sometimes get long. I like what someone said about the "new normal". I do try to stay positive and am glad I am able to be upright longer than many with pots. It was also nice to read that many of you do as I do and tell people we are fine or doing better, even if we aren't. Mostly I look fine, so people assume one should be better. For me I have to look back at almost a whole year and say the second year of having pots was not as bad as the first. If I look from week to week or month to month the progress is soooo slow I don't always see any.

[lmt033167]

summer I could have written most of your post and feel the same way

what I find funny is at first when I was dx and then had heart surgery and found out how sick I was, most of my family and friends asked tons of questions, came to see me and helped out...as the months have gone I'm stuck in my house and have had to rely solely on my husband. We completely changed our way of life, and no one cares anymore that I'm sick - they don't come to visit anymore and are honestly sick and tired of me not "recovering", when someone does call and ask how I feel, I used to say oh about the same then they go into if I got out more or tried exercise or physical therapy I might feel better...now I just say I'm fine and then change the subject...

it's frustrating to me that even with medications and trying everything my drs have suggested that I still feel the same, and only slightly better on some days - but other parts of me like neuropathy is worsening and widespread now to where before it was only hands & feet - I just can't explain to them what neuropathy feels like; I'm not sure what my family or friends think anymore - am I overexggerating or lying about how I feel.

I posted in another post about Easter being a prime example - someone in our family changed what we're doing this year and I wasn't given a choice about anything...we used to do egg hunts first thing in the morning about 9am, which I knew wouldn't be a problem. Now it's going to be outside at 1pm which will be about 85 here and I have a huge heat intolerance problem. I said something to my husband like who decided to change the plans? he just sighed; so I knew it was his sister because of her b/f's plans, so do I act spoiled and say we cant have it at 1pm and ruin it for the other kids or do I just grin and bear it and hope I dont get sick. I feel so selfish actually telling them I NEED it to be in the morning.

Before I got really sick, we were used to going off Friday - Sunday; always on the go and doing something sometimes during the week we went off in the afternoons too, now I'm lucky to feel good enough to walk to the car in the garage or walk out the 20 ft to get the mail. I tried Lexapro to help with the depression I developed after surgery, but it didn't help and the other meds I've tried may help my symptoms somewhat but the fatigue and sickly feeling I get isn't worth it.