How Do You Keep Up The Fight?

[DSM3KIDZ]

How do you guys keep from crawling in the bed and never getting out? I'm sorry in advance for the vent but I need a release and you guys are the only ones that understand.

I can't seem to pull myself together. I've been doing good staying positive for months but I just constantly feel defeated. When I was first sick in 04. I would get sick for a few weeks than feel 100% for a few weeks. I hated being sick but I lived every moment of feeling good. Now I'm just sick all the time. Every day it's something. Dizziness, migriane, fatigue,nausea,bladder pain etc. My friends and family tell me it's always something. I hate this because it IS always something but something that I have no control over. Do they really think I am enjoying this????

I am missing out on so much with my kids. Not that I don't see them but my patience is wearing thin, we'll be doing something fun but I feel to crappy to enjoy it. A few times a month I have the kids on my own because I'm always sick and I'm thankful for the help but I also resent it because that means I'm not well enough to take care of my own angels at the ripe old age of 29.

If I could just see the light at the end of the tunnel.

Thanks everyone

Dayna

[janineerrn]

I totally understand! You just have to keep going. Tomorrow may be a better day. I get fustrated and angry sometimes when I think ahead so, I try not to. Wish I could give you some advice that would help.

Hang in there

BIG HUGGGS

Janine

[Lori]

Do you have POTS?

[DSM3KIDZ]

Lori

I have Autonomic Neuropathy along with POTS and Gastroparesis.

dayna

[Lori]

Lori

Dayna

what is Autonomic Neuropathy ?

i just have POTS but was just recently diagnosed so i am so new to this all

but i feel how you feel

lori

[sally]

Hi Dayna,

Hope you are feeling better soon. Alot of us on the board can relate to what you are feeling I'm sure. Its very hard to raise children while ill with any illness that wipes you out constantly. For me, I raised both my children like this (unknowning what was wrong with me at the time), it was very hard and heart breaking at times not being the mom I thought I should be when I was ill alot. If your children are smaller, try to do things that don't require alot of energy to do like reading together or coloring or just watching movies.

My kids did ALOT of reading and coloring or painting believe me. Hopefully you'll be on the upswing of things soon and can do more physical things with them and enjoy it when you feel a little better. As far as any negative statements from others about your illness, ignore any negative statement. People will not understand fully what you are dealing with and how it impacts your life unless they themselves have a chronic illness to deal with and can relate and any negative statements will just make you feel worse. Maybe suggest they help you out if they are not already doing so.

Best wishes sent your way.

[rdslots]

It is really difficult to stay positive all of the time. It helps me to log-onto the Boards because, always, for as bad as I feel, someone is worse off, and when I can focus on something or someone beside myself, I am better off.

I know exactly what you mean about feeling 'old' and 'sick' all of the time. This is certainly NOT how I ever pictured being retired and I fight getting depressed over it A LOT. It is especially hard when you would have described yourself as healthy as a horse, strong as an ox, in decent physical shape, and looking forward to doing all the things you always looked forward to doing when you had the time to do them. (Could you follow that?) I've got all of the time in the world, between episodes, occasional trips to the ER and the DR, and days on end of just feeling plain sh*%%$.

Fortunately, my daughter and only child, was a JR in HS when this hit so she rides the roller-coaster better I think than had she been a young child. I grew up with a mother who had polio, walked with crutches and a brace most of my life, and was very limited in what she could do, and I always prided myself on being more empathetic/compassionate towards others. I never regretted having a handicapped mother because I always saw it as sort of a "trade-off" in that I got so much else from her. She too was a fighter -- you'd never convince her, even today, that there was something she couldn't do, and fortunately, I think I inherited some of that from her.

I have days when I'll be ****** if I'll let this dictate my life, but then others when I want to just fling myself off a bridge, or into the path of a passing train.

It's a toughie, but like I said, if I can find something else to focus on, I can get through a day, and another, and another.

Oh, and I think a sense of humor -- whatever kind (mind is kinda sick sometimes) -- goes a long, long way!

[Sophia3]

If learning to cope with chronic illness is overwhelmiing a GOOD therapist is CRITICAL and VITAL if you have problems keeping a sense of self in the face of hopelessness and despair.

Somebody well versed in CHRONIC ILLNESS, severe limitations and "reality based". I never needed one until some horrible family drama the past couple years with elder parent.

But I don't have kids counting on me to add to the stress.

It's easy to say our illness is "not the essence of who we are" but when you can NOT work, stuck on limited tiny funds and Soc sec, semi housebound Or/and not married...it's a constant challenge.

FOlks say take a day at a time? Over the years I break it down to hours or even minutes...get sadness out of my system as more capabilities are taken away...grieve and move on.

If I think about it too much it IS overwhelming so I must WORK on distraction with little things such as seeking out laughter with friends on the phone, or in person the few times I am up for an outing or company..and you have to work at coping which is NO EASY FEAT whe you are in the place you are in.

It's not like we can pull ourselves ouf by our bootstraps if we have days we TRULY CAN NOT STAND UP!!!

Make the house as OI friendly..comfortable chairs with ottomans...shower chair, vanity chair to sit and do makeup, dry hair, fix hair...pluck eyebrows, etc.

I wish I had some answers for you but after 15 years I can HONESTLY say i forget what tricks helped in the earlier years except for laugh therapy....(memorized the Marx Brothers movies and many seinfeld episodes!) Dumb sounding stuff but it worked for me...music therapy...and just WHATEVER it takes to cope.

Meds are good if you find something you can handle.

Good luck and NEVER feel bad expressing where YOU are in your situation.

Hope you find something that works.

[Jacquie802]

Hi,

I can relate to how you are feeling. Is there any type of activity/hobby you can do? I usually paint while sitting down. It's something I used to be sooo good at and do all of the time. I am a little rusty now, but I am working on it.

Mostly I have become irritated with people. I have friends who complain about things that really just sound stupid to me. One complained about her mother not letting her use her (her=mothers) credit card. I'm like wow, I wish that was all I had to deal with. Anyhow, I do have times where I pity myself. Usually after a good cry I am better...We are all here for you though, so please don't feel alone.

Jacquie

[morgan617]

I too had kids before this was ever heard of. I know I feel they really got cheated by my illness. But as adults, they both say they never felt that way. They sure got to be good readers, because we did a lot of that, and puzzles. Things that weren't taxing physically.

We went on 2 vacations when they were small. I had to save most of my energy for work.

I know how you feel. I can't help you, I'm sorry, but I so understand. I've been really struggling lately because I can't remember the last time I had a good day physically. I honestly can not do it.

I used to watch my grnad kids and now I can never be left unattended with them. I know you are younger than me, but I remember how bad I felt at your age, so I do know.

I guess I just want to say, your kids will not remember these times like you do. Maybe because they are little and it will seem normal to them. I'm not saying that's a great thing, but it's what they will know. And mine haven't suffered because of it.

Hang in there, sometimes the only way you can go is up! morgan

[Ernie]

Hi,

I always hope for the miracle pill.

[Guest sonotech]

Dayna,

I know just how you feel. I have 4 kids all in elementary school and though recently diagnosed with POTS, I have been suffering for about 6 yrs (at least).

I have ALSO felt that my children were being cheated, but we know this is out of our control and we DIDNT ASK FOR IT!!

I have learned to rent movies with them and make popcorn, play board games, cards (which can be done laying down in bed), heck I have even played ball with them while layong down....I lay in bed and they have a soft /blow-up ball and we toss it back and forth.

Their FAVORITE thing to do is of course lay next to me in bed while I tell them how much I love them, and then TICKLE THEM LIKE CRAZY!!!

Your kids will love you for who YOU are, and will remember what good times they had with you.

Now, for as far as your family and friends??.....I know when they say "something is ALWAYS wrong" that they are probably just concerned and DONT KNOW WHAT TO DO OR SAY. It is hard for them to watch you struggle.

SO......GO back to being the great mom that you are, with whatever works for U!!

LAURA

[rdslots]

I'd only add, that with so many others who want to 'beat us up' sometimes, we sure don't need to beat ourselves up.

Somehow, find a way not to feel like you are cheating your children -- had you not gotten this, how would you have raised them differently? Aside from having more energy, not being confined to bed, and more physically active , yadayadayada -- would they learn empathy and compassion? I might also point out that the activities so many of you young moms mention are exactly what children need -- quality one-on-one time and mind-stimulating games like cards and board games. So many young parents are so harried until they don't even sit to watch a movie with the kids, but let the movie babysit them!

These disorders su@*, no doubt about it, and are incredibly frustrating because there is not one tried-and-true treatment, but if I honestly couldn't find something to keep me going -- even if only for the moment -- I'd have hurled myself off a bridge, as this is no way to live. A good therapist, as someone else pointed out, is paramount too.

(she steps down from the soapbox, and slinks away. . .)

[DSM3KIDZ]

Thanks everyone for your imput. Everyone had great advise. I am really hard on myself which doesn't help. Like any good parent I just want the best for my family.......including myself. I guess right now I have to go with the flow and hope that the days get better. After fighting everyday to get up and put on a smile sometimes it just gets to be too much for me to handle. Thanks that I have this site to help put things in perspective.

Trying to smile

Dayna

[Brwneyedchica]

Dayna,

I'm sending big (((((((Hugs)))))) your way and I hope you feel better soon! Even though you might not be able to go out and do all kinds of physical activities with your kids, you can, as everyone else mentioned do alot of other less exertive activities. You love your kids and are spending time with them in whatever capacity that you are able and that's what counts. If anything your children will grow up being more empathetic people. Don't be so hard on yourself...sometimes you just gotta play the hand you were given. Believe me I can only imagine that it's not easy but I myself have found that after feeling lousy for awhile I usually get some kind of reprieve and feel better for awhile. That's what I look forward to. Hang in there!

[Guest Belinda]

Dayna..I keep wondering the same thing if it isn't one thing going haywire it is another..Dr.Grubb did tell me though on our very first meeting that I need to find a therapist that deals with chronic illnessess. I wasn't even showing that I was distressed about having POTS then I started crying after he told me this..it probrably isn't something any of us want to hear..

All I can say is keep f ighting I have to small boys and I just sit and think about the failure I feel like..but I guess I keep going and realize I don't have control over this sh***** illness. And do what I can to get along.. your kids and other family members will go on and will not be destroyed because of your fate..remember that okay??

Take care of yourself and if you can't do it, then you can't. You need to worry about Dayna and how your going to get through this.

Belinda

[rdslots]

Hmm. . .on a little less positive note, (gulp!) here goes --

I believe when life hands you lemons, make lemonade, BUT I am sure sick of drinking the stuff!

[CDT]

Hi

I am very new to this site and happy to find people that can relate with me. I am a single parent and recently been diagnos with POTS! I have 3 kids one 14 years old, 18 years old and 21. I was injuried in oct 2004 a ton of raw iron struck me in my head and I have been suffering since. The doctors told me a damaged nerve cause my pots and also I have brain injury. But my children suffered as well. I could not do any fun things with them, I barely make it to their programs at school, I was a rack at my 18 year old high school graduation, and now my oldest is graduating from college (NY) in May I am nervous that I will be to sick to enjoy my first kid graduating from college. I have been talking with my kids so they can understand what is going on. They are older but they all need to know what is going on with their parent. The days I have less pain I make the best of it and enjoy my love bugs. If you can only just give them a hug they will surely enjoy that moment. I wish you and your family all the luck. Hang in there

[splecu]

Dayna,

I can totally feel your pain.

I have 3 small boys ages 5, 3 and 3 months. I can't do too much playing with them either and it tears me up to have to tell them "mommy doesn't feel good right now" because I don't want them to think its just an excuse not to play monster trucks!

I have this new baby and I can't even carry him around b/c I'm afraid of falling down. Its sad when my boys have to say "mommy, are you going to fall out". My 3 year old thinks the hospital across the street is my hospital because hes had to come see me there so many times.

It is aggravating when people don't understand and most of them don't. My family gets it and my close friends that I spend alot of time with somewhat get it but unless you really experience it, you can't understand what it feels like. I can't explain to somebody what a "POTS Day" is- only that I feel like crud and can't get out of bed on those days. At least the people on this forum understand and it helps to have this arena to vent.

Good Luck and keep your head up- the one thing with this condition is there are good days and bad days and we just have to find ways to get through the bad. I like to sleep through the bad days when I can- I hate to sleep my life away but at least when I can do that, I don't have to think about how bad I feel or have a pity party for myself!

Take care....