Ever feel like just giving up

[purplefocus]

Yesterday was a horrible day for me. It took every ounce of energy I had to just be able to get up out of bed let alone take care of my two year old. I usual find myself handling things well but yesterday it hit me with a ton of bricks. The pain, the syncope, the brain fog, and of course, losing the ability to work or drive .............was more than I could take, so the pity party I had made me think I was only a lump of clay sitting in a chair for no reason, I was thinking I was the biggest burden on my family and they would be better without me. I realized I was not in good shape so I called my doctors nurse and talked with her, her response was to go to the ER immediatly............well we know what happens when we go to the ER, let alone with a problem like that but because of my wonderful husband, he made me go, I tried to explain to him that I just needed sometype of nerve pill and I would be ok..............well we went to ER, they had someone talk to me, asked me if I wanted to be admitted, I said NO!!! so they gave me a paper with a number and told me to call tomorrow morning. Well here I am, still feeling blue but not as bad as yesterday. What is some of the ways you deal with the bad sad days. It doesn't happen all the time. Oh yea, I was on Lexapro but my doctor took me off of it and is gonna start me on another drug but he wanted me to wait 14 days. Sorry this was so long.

Paige

[Deb]

Oh Paige, I'm so sorry you had such a bad day. It can be so hard to pull up out of it. For the short term it sometimes helps to think about the good things that you do contribute like being a mother to your baby and a companion to your husband, and then think how terrible it would be for them if you were not there for them. You'll have better days again. This is temporary.

I didn't know what was wrong with me when I started crying over every little thing, and thinking that nothing gave me pleasure, and wondering why I was even alive. Then I thought about my kids and husband and parents and then good thoughts started to come back. But I really had to work on it. I chose to think positive. It took me months to realize that I really needed something to help me with that.

I started taking Lorazapam twice a day for the first few weeks while I was also started on Zoloft. Now I only take the Lorazapam once a day. When I get to the recommended dosage of Zoloft, I probably won't need the Lorazapam any more. I did an experiment and did without the Lorazapam, and what a difference there was. I was a basket case again. Starting Zoloft caused me to be more symptomatic, and each time the dosage is increased, I feel worse for a few days. But, in the long run, I think it's going to be worth it. I feel so much better.

Hang in there. Keep writing and sharing. Everyone understands what you are going through.

[MightyMouse]

First off, Paige, some SSRI's including Lexapro, can actually provoke suicidal behavior--in fact, a warning was released about that a few weeks back, particularly when using with younger people. A different type of antidepressant might be a better choice.

Also, meds alone are rarely an answer to depression. The best thing you can do for yourself is to get help from someone who is comfortable working with someone with chronic illness. I can tell you that, for me, having a person to vent to outside my family and close friends REALLY helped. I think it made me feel like there was one less "burden" of mine that they had to take care of for me. It gave me an outlet for all that stuff that worried me, and also helped me to learn practical strategies for coping.

I'll tell you my strategies, but they may not be what works for YOU.

1. I had to learn to say "no" to certain family obligations in a way that didn't make me feel bad or guilty.

2. I had to learn to stop talking about my health with certain people in my life who made me feel worse or made me out to be a hypochondriac (in this case, my mother).

This has been hard because it means I have to divert the conversation whenever she asks how I'm feeling. Giving an honest answer only left me feeling upset afterward because she just doesn't "get it." Funny thing is that I think she's noticed I wont tell her anymore and it's upset her. Now she asks my spouse, who is much less tolerant of anyone who tries to belittle me for my health problems. (so nice to have someone in my corner!!)

3. I try to get enough sleep. My mental state is usually pretty crappy if I've not gotten my ZZzz's. This means that I have to stop my own voice in my head that says to me "you are weak if you take that sleeping pill." Sometimes I win this one, sometimes I lose to myself.

4. Go to the doctor if I've had 4 days in row that have been having new health problems or increased typical problems. I had to set this one because I would keep hoping my weird symptoms would go away as mysteriously as they arrived--but my doctors and I have now set this rule together becauase things that last 4 days or more seem to not end well--i.e. I end up in a crisis in the hospital with pneumonia...or with a gallbladder attack...or asthma crisis. Since starting this 2 years ago, other than surgery, I've not need to have an inpatient stay.

5. Try to maintain as many of my hobbies as I can. I like to garden--it helps me feel peaceful. I also like to make jewelry--and when people comment on a piece that I've made, it makes me feel like I've still got my creative side working, even if my body wont always play nice. I also try to maintain as many friends as I can--keeps my world from getting too small.

Not sure if my personal strategies will help you or not--they're pretty specific to what I need in order to stay at my best mentally.

Hang in there and try to get someone to help you through this. Nina

[morgan617]

sorry about your bad day, i too have been having an awful time. my kitten went into icu with pneumonia and severe asthma on monday, then two days ago my dog stopped eating. my kitten is sloooly improving but we found out our dog had terrible cancer and had to be put down. yesterday, with our cat down the hall in icu. my animals are like babies to me and the stress of this has really taken it's toll on an already too stressed body. so i can barely function. they are the sweeties that keep me company all day when my son is in school and hubby at work. it just doesn't seem to take much of anything to comprimise us and so any kind of stress is a killer both physically and emotionally. i hope you star feeling better very soon, and hang in there. dan hello by the way. haven't heard from you and my computer got wiped out, so don't have your email. can't remember how to get it off ndrf. talk about brain fog.... morgan

[futurehope]

morgan617, I'm so sorry about your dog. I just went though that 2 weeks ago, and I'm still recovering mentally and physically. My health is much worse. Any kind of stressor, and I'm worse. Hang in there, nothing stays the same!

Purplefocus, I just hope that when your day gets really "bad", you realize that what you are feeling is a FEELING, and in all likelihood, feelings change. I hope you get the help you need so that you are better soon. Can you remember back to when you were okay? How would YOU have thought of somebody else who had a physical disability? Would you have thought less of them? You are NOT less of a person because of your disabilities. You are here for a purpose.

[morgan617]

futurehope, sorry you had to go through it too. but you are so right, our perceptions of ourselves are seldom as others see us. i have had serious bouts of depression in the past and now realize that the feelings i had then about myself were only my feelings. the people that loved me and cared about me had none of the perceptions of me i had of myself. i've never thought less of anyone for being disabled, but now sometimes hate myself because i am. we need to learn to hate the disability but not the person inside. life is often a struggle under the best of circumstances so we should be patting ourselves on the back for dealing with life under horrible conditions. even when we think we aren't coping, we usually are. and we all have different ways of doing that. morgan

[Sue]

Hi Paige,

Having a miserable day myself right now but wanted to tell you I'm feeling for you right now. Sending good thoughts your way right now.

((((((((((((((((((((((((((((((((((Paige)))))))))))))))))))))))))))))))))

.....and a hug

Sue

[denabob]

Paige: I read a really good book one time (if you enjoy reading I highly recommend it!) Joyce Myer is the author and thanks to brain fog I cant remember the specific title but it's something to the effect of "Controlling your emotions instead of your emotions controlling you" Feelings are temporary and they dont have a brain so you have to shake yourself and say ENOUGH! I'm worthy just sick and this too shall pass!

Nina: You are a true God send! You're kind and helpful words have helped us all!

Deb: How much Lorazapam do you take? I'd like to try it...my mom takes it for another reason. I took zoloft and it helped for a while but I wasn't happy with the side effects( which you really dont want to know about! )

Maybe it's a full moon or something I've been healthy( well not sick) but extremely moody! I have my poor boyfriend thinking I'm mad at him because I pouted about not getting to see him much lately ( due to work) I should be ashamed of myself he's so great that he just tries to pacify me. He knows why I get this way so he tries to not take it seriously when he knows he's not guilty !

Morgan617 : I'm sorry you have had to experience such a hard time with your animals! They can truely be as close as our children - they are part of the family! I hope your cat does well. I'm allergic to cats so I lean towards dogs but I understand the love of an animal!

Deanna

[EarthMother]

I feel like giving up often ... but I can't quiet figure out HOW? ;-)

I think there is a lot to be said however to surrendering to the moment. Doesn't mean we stop trying .... but if it's a "bad day" we quickly **lower our expectations**. Success may mean walking downstairs and sitting on the couch while we watch our active toddler run around pulling books safely off the shelf.

I know it's hard to remember that this often comes in cycles ... worse yet we don't know how long the cycle is going to last. But instead of thinking about what might be ... or what has been .... or worse yet what we use to be! ... come back to the present. Big deep breath ..... ahhhhhh. Good. Listen. There might be birds outside, perhaps kids playing on the street, maybe the hum of a computer in the background :-) Shrink your attention down to the smallest moment. Just right now. Right now, I'm breathing. I may be in pain, or dizzy, or very sleepy. Try to make yourself comfortable where you are.

It will pass. And I know this is much easier to say (type) than to do. I completely fell apart last night when my husband told me he had a 3 day conference to attend that was an hour from home. An hour from home .... he'll be back every night, but I couldn't handle the "change" from the normal routine. Terrified that the stress would "cause" another crash, frightened that I would get sick and have no one here .... more and more mental noise. I was lost in it. And I'll probably loose it 100 times again before the trip takes place in a few weeks. So no .... it's not easy when we are not feeling up to it all. But I suppose it's all part of the journey.

Good luck in your own healing adventures.

[purplefocus]

Thanks everyone for all the encouragement. It really does help to talk to people that have the same thing going on. I am doing better, still have a little blues but nothing horrible right now. My husband is off the weekend, first one in months so I will be catered to. I don't know what I would do without this site. Thanks everybody.

Paige

[Guest Julia59]

Morgan, i'm so sorry about your dog. I don't know what I would do without my animals. They help me get throguh the bad days.

I'm glad for those of you who have spouses who are very supportive. I am also fortunate in that my spouse backs me with every aspect of this illness. That is truly a blessing---especially for those of us who lack other family support.

Nina, I get the same attitude from my mother, and I too don't talk with her about my health. This I have just recently decided, and now she is so thrown by it. Oh well---you gotta do what you gotta do.

I need to focus more on the people in my corner, then on the one's who dissapoint me. I need to work on my attitude---as you can see from some of my posts. I am wondering if the wellbutrin could be causing this terrible gloomy mood i've been in. I just can't seem to get out of this funk i'm in.

Julie

[DawnA]

Hi Paige, I have felt like giving up many many many times!!! I have enjoyed reading how everyone copes with this. This is how I have been coping lately.

1. I remember that my emotions are temporary. I am not always going to feel this bad.

2. I like Nina's advice about going to the Dr after four days of physical symptome worsening. I learned my lesson when I was walking around for a long time wiht low potassium. I was very emotional and did not know why. I had periods of disorientation and felt my heartbeat was irregular. I just assumed that I was emotionally falling apart and I would pull through..instead I could of had a heart attack!!!

3. I go to counseling. It is nice to have a third party listen to you and give some guidance. It is nice to have someone who is nonjudgmental really listen to hwo you feel, show empathy and tell you it is OK to fell that way!!! It is nice for the extra support.

4. I remember that ...Suicidal thoughts come when the pain is so overwhelming we want it to go away. We don't know what to do to make it go away. That is when we need to reach out to others for support...like many of us have done on this forum. For me this is one of the hardest things to do.

5. I look for things to be happy about. It is the small things that are really important. When I have a hard time doing this I go to some personnal web sites from caring-bridge and keep my self up to date with others who are so much sicker that i am. My favorite is a family from Milwaukee who has four children affected by a mito disorder. The boys are affected the worst and are dying. Yet they enjoy life to the fullest and are so positive. I have learned a lot from those boys.

6. I depend on my Christian faith and try and remember...this life is not about me but it is about HIM. He created me for a purpose and I am here to fullfill it. Whatever his purpose may be?

Many blessings,

Dawn

[purplefocus]

Dawn and Everyone Else,

Thank you for your advice. The pain does get horrible but I am starting to find the relief for it from Neurotin. I am doing better and have had a great weekend with my husband and kids. Once again if it wasn't for this site and being able to know I am not crazy that I really have these symptoms and feelings and it's not just in my head like so many say, I am so thankful for everyone in here. I did push myself yesterday to the point of passing out at the Putt Putt Golf Place but at least I made it to the car with my husband when I did. This illness is frustrating but I am gonna concentrate on not letting it control me. Ok enough rambling........THANKS YA for being so SUPPORTIVE.

Paige

[migraine]

Hey Paige,

Sounds like you received tons of wonderful advice. I had one of your bad days yesterday. I don't think I'm depressed or anything I just feel like every once and awhile I look at myself and go, "It cannot be possible that any one person has this many illnesses." I almost feel more annoyed than actually sick.

After setting up all of my appointments for my OB/GYN, neurologist, cardiologist, primary care physican, eye doctor, and chiropractor...it suddely dawns on me that I am literally falling apart! On top of everything I woke up yesterday morning with severe lower back pain hunched in a fetal position. Why in the world would I be cursed with this on top of my severe headache, nausea, and other POTS symptoms!

I cried all last night because my six year old daughter had to make her 4 and 2 year old sister dinner...peanut butter and jelly - because I couldn't get up (My husband works nights.) They tucked themselves in bed and said that they loved me and would take care of me. This made me ball harder...I was determined NOT to be sore and sick. I laid on my counter top cleaning jelly from the counter and crawling on the kitchen floor to put dishes in the dishwasher.

It was pathetic and I decided to give up and cry in my chair all night. Once home, my husband picked a very bad time to point out that I'm always sick and not a day has gone by that I have not complained about something hurting. He is not very sympathetic and I almost wish I had a disease he has heard of so he will nurture me. He thinks this is not an actual disease, but a way for the medical community to get lots of money from us and our insurance. "Oh and isn't it convenient that the cardiologist is located directly across the hall from the neurologist that referred you." This forum has helped me so much because I feel like you all understand and have been there.

I do not always feel like this. I am usually a fairly active and outgoing person. I have been known to work, do landscaping, and drive the kids everywhere while sick or sore. I really need to quit more often so my husband and family realize that I need help. My husband and I have been listening to these financial planning tapes. The guy said something that really inspired me...He said "instead of not doing anything...try to underachieve!" I have been sitting on my bum all week. I know I could not go out and jog 2 miles or anything, but I did walk one mile on my lunch break today. I will also probably do 1 load of laundry and attend a soccer game. And that's all I can do right now, but darnit it's better than sitting there.

I think without my kids it would be easier to fall into a depression and lay in my bed all day. They kind of demand that I push through this. I am convinced that even though I have had some crappy days, I'm going to have some great days too. Anyway, I'm probably venting more for myself than offering you support or advice...but just know that you are not alone. I really take all of the support and suggestions you have received on this topic to heart and I'm really glad we have this forum.

[Deb]

Migrain, go ahead and have a good cry. After all, you have lost something, the you that you used to be. But after the cry, snap out of it (the sound of a slap) and don't allow your husband or anyone else to make you think that your illness is not debilitating just because it's not well known. We all know what it's like. I'm glad you do have some good days. I sure hope they soon start to out-number the bad ones for you. Deb

[purplefocus]

Migraine,

I do want to hear how bad your days are, I want to know how bad everybody's days are. It makes me feel more normal (in an odd kind of way). Like I am just like everyone else (at least on here). I can have my melt downs just like everyone else, then pick myself up once my body lets me. Really it does help my mentality to see that you guys have these melt downs too and that they are only temporary and we can go on the next day or even the next hours.

Paige

[DawnA]

Migraine , I do not know how you can work full time and take care of preschoolers with being sick and all!!! Is their any way possible you can cut back at work? It sounds like you have a lot on your plate.

Dawn

[migraine]

Yes Dawn, I feel like I have tons on my plate but I haven't figured out a way to get out of it. I also used to sing in a band on the weekends, teach kindermusic, and try to be on a board or committee for all of my kids' functions. It took going to a shrink to validate that my mind and body were fried and how to express that to my husband! I quit the band and kindermusic. I go to my kids' activities, but I am not on any committees. I have become the Mom that always brings chips at every event:)

As for work...well, I'm working on that. My husband owns a business. Since he is self-employed we have no insurance so I have to work in order to have insurance to support my POTs and doctors visits. My POTs symptoms started after my first child was born. I took a year off to be with her and supposedly get back to my pre-existing health (I was yet undiagnosed.) We were just starting out so to make a long story short I ended up with a lot of credit card debt.

After seven years we are getting on our feet. I have about 2 more years to pay off my debt and then I will have more options. I keep looking forward to that day. Until then I sort of just push hard for about 2 weeks, collapse, pick myself up, and do it again.

Another Mom mentioned that it was somewhat easier to be at work when you have kids and are POTSy. I agree with that. I feel horrible for saying this because I adore my children, but the mental effort of work is a lot less demanding on my POTsy body than the physical fatigue of getting bottles and changing diapers. Boy that sounded bad. I give stay at home Moms a huge amount of credit. I am hoping that by the time I am able to go part-time or not work, my kids will be older, and I will have the physical strength not just to be a stay-at-home Mom...but a good stay-at-home Mom.

I live in a little development with several other families that are our age also with young children. They always look like they are buzzing through life so effortlessly. I hope to just appear like that some day.

Paige, thanks for making me feel OK about venting. It makes me feel better to know other people experience the same things too.

[DawnA]

Yes it definitely a lot of work to stay home with young children, I forgot about that. You and your children are much better off if you work. And you definitely need the insurance!!! Maybe once you get on your feet you can hire someone to help wiht the housework. That's what I want, but we to are working to get our debt paid off. We are getting closer and closer to that goal.

Take care of yourself.

Dawn

[EarthMother]

Hugs to you Migraine,

It's so hard when we have little ones (my youngest is 7 and has no memory of what I use to be like when I was on my feet running at full speed.) But I find we raise thoughtful, caring children when we are faced with these health adventures. Perhaps someday they will be the ones to transform the world.

Sorry your husband didn't have the right things to say. Mine told me just this week that he doesn't think a day goes by that he doesn't hear me complain about SOMETHING. It took me off guard, because I thought I'd been doing so much better. But I guess even on our "better days" we still don't measure up.

Ok, I had better go before I well all up and cry again.

Good thoughts your way. And hugs to everyone who keeps on keeping on. I wouldn't be able to do so much of this without each of you.

EM

[morgan617]

there's a post here (brain fog) where someone says it's nice to have people who feel the same way. i think that is so true. i wouldn't wish this on anyone, but it's also hard when you think you're the only person with these weirdo things going on. i just sent in my story and then burst out laughing when i realized i hadn't put even half of the symptoms i have. talk about foggy. anyway, i think we all have really bad days. my hubby never says mean things to me, but i have clearly seen him totally tune me out, which is a little ouchy too. they are very good to me, but really can't know what i'm feeling. so it's wonderful to have a great place to go. and it's always okay to cry and feel helpless. or hopeless. we have all felt that, but just remember, it passes and sometimes the sun does peek through. and for the person who sent the nice message about my dog (this is bad!) thank you so much morgan