I AM SO FED UP!!!

[bamagirl]

Yesterday I cried all day and told my husband I can't so this anymore. I feel like crap all the time. My vision is blurry and dark, I have horrible burning and stinging nerve pain in my skin, my heart races all the time, even while lying in bed, I get terrible migraines. Nothing helps with this stuff. My whole life is falling apart and I am lying in bed watching in go down. I can't work, I can't be the Mom or the wife I want to be. And the worst part is, no-one or no treatment will make it go away. I have been in bed for two weeks now and keep hoping tomorrow will be a better day. That tomorrow never comes. I have been battling this for five years now and have finally reached my breaking point. I'm tired of being scared all the time. How do you guys keep going knowing that every days is going to be a day of disease and pain?

Sorry for the negativity, I just know you guys understand.

[katie_b]

I'm sorry you're going through a rough time.

The truth is...I have no idea how I keep going. Don't get me wrong, I have some pretty horrible days, but I just make the best of what I have (not an easy thing to do)!

There have been so many times that I was ready to die and willing to die, but I just wouldn't do it because of my family. I'm not sure if you feel that way, but your husband and kids love you, no matter how sick you are.

Have you ever tried holistic healing or anything like that? Most people don't believe in it, but I would say anything is worth trying at your point. Perhaps it's something as simple as changing your diet or taking a few herbs. I would give that a shot.

Good luck!!!

[Poohbear]

I wish I had the answers for you (and for all of us for that matter). Sounds like you are in a rough place and understandably at the "end of your rope".

I've been in similar times to what you describe and it does feel rotten. You will have better days ahead but it's true that they may not come as quickly as you need them or want them.

When I've been in these dark places in dealing with this illness I don't know that any one thing makes me feel much better. I guess I would say allow yourself the time and space you need to cry, grieve the things you've lost and express your anger in healthy ways (journal, create a collage...whatever your outlet is). Try to pamper yourself a bit as you go through these days, curl up with a book you've been wanting to read, treat yourself to your favorite movies, listen to soothing music.

If you have a counselor, you may want to call them for some extra support or if you've never been to counseling maybe that is something you could look in to.

It is difficult dealing with any chronic illness and you may need more or different support than your husband and family can offer.

I understand your feeling that no treatment will make things go away. Try to remember that the process of finding things that help can be a long and tedious process and you may not find relief in the traditional meds that Dr's want to prescribe so try to be creative and do whatever makes you feel better.

I hope you will feel much better soon!! I'm sending (((HUGS))) your way

[Ernie]

Hi,

The steps leading to acceptance: denial, anger, negotiation and acceptance. After you have accepted your diagnosis and make the necessary adjustments you can get back to living some kind of life.

[Gena]

Sorry to hear you're in a dark place. Others had very good advice and tips to offer, so I don't know what else to add. I would definitely look at your diet and fluid intake to make absolutely sure you're doing everything you can outside of your meds that can help you. I also love to read inspiring or healing books when I'm really in a POTS hole. They seem to put things in perspective for me and give me hope.

Also, have you checked with a cardiologist about your constant tachy? And with a neurologist about your blurring vision and migraines? Headaches/migraines can make everything seem unbearable because of the intense pain. I used to get (and sometimes still do) very bad headaches when my BP is low. I had them last for weeks at a time. When they finally subsided, I discovered I could actually take acccept, tolerate and manage my other symptoms much bettter b/c the pain had finally gone.

I am sending out hugs to you and feel free to email anytime. I know you get adrenaline rushes too at night like I do. It does get better though. I've thought I was going to die so many times and I've wondered how I can live like this on a daily basis, but eventually my body somehow comes back to a state I can deal with and I have learned to appreciate the good days. May you find peace soon.

Gena

[Evie]

Gosh so sorry that you you are having such a tough time at the moment... we all break occasionally and sometimes it just helps release all the anger and frustration that has been building up for years.

I dont know how i coped either .... i think its not bravery as much as having no choice ... you have to deal with what you have got. (that sounds really negative doesnt it? i appologise i dont mean to give you negative responses).

Just please dont ever blame yourself ... its not your fault and you are doing your best under bad circumstances. For some reason i think alot of sick people have alot of anger at themselves for not fighting harder or being able to 'fix themselves' .. i know i have that anger and it pops up from time to time, along with feeling helpless... a strange combination.

Maybe as Poohbeart suggested, a councellor or someone not emotionally attached to you to talk to and work through your emotions.

Its really hard and the emotions can be brutal ... im so sorry that you have to go through this ... just know you are not alone in this experience *big hugs*

[dizzygirl]

I hope that you feel better soon!!

BIG HUGS TO YOU!

[Jacquie802]

I understand how you are feeling. Even on your worst days try your best to atleast get out of bed even if just for 10 minutes. The symptoms **** thats all I can really say. There have been days I have just layed in bed, felt bad for myself, etc. It's completely normal to feel sad and depressed, I know its hard for ppl to understand POTS unless they have it as well. There are soo many things to look forward to in life and you are going to feel better soon.

[Dawg Tired]

I have to agree with Ernie. Once I went through the grieving process for my old life I was able to start to rebuild. I spent nearly 5 months in bed, had to have help to get to the bathroom, take a bath, even eat. Because I kept denying that I had anything that was going to be long-lasting I kept trying to "swim upstream" and worked like a dog even though I was barely upright.

I hope you don't have to go through the whole process, but I was extremely stubborn and didn't want to accept that I had anything wrong. I was convinced that surely there was a magic pill that would cure me. I'm still looking...

[ramakentesh]

For me the thing that kept me going for a long time was trying to find an answer to why I was sick - i became ill in October 2003 and didnt get officially diagnosed until late 2004.

But during that time there were definately periods where i just didnt feel like getting out of bed - i knew that i would feel like crap within half an hour.

I had to go to work and that was really hard at times when you feel disassociated from yourself and out of it and dizzy all the time.

Thankfully for me it ebbs and flows - i have bad periods but I also have good periods - ive felt pretty good for most of 2005 - until recently any way.

My best advice is to try and distract yourself - get into your hobbies for a while or start reading some books or buying new CDs. Before you know it you'll be feeling better and the bad periods will pass - they always do.

I hate the brain foggy feeling and the dizziness the most.

Have you tried licorice or licorice tea?

For me I am a young person (like most potsies ive been told - in the mid to late 20s when the onset occurs) and i refused to give up my life - i just had to lesson my involvement in what i used to do and conserve my energy - and some times I just had to try and do things or have fun even when i felt terrible and dizzy and spaced out - I knew i wasnt going to do from this - and I wasnt going to let this crap limit me. I just started to grow in other avenues of life.

[d4g7]

I understand completely where you are coming from - I posted a similar topic a few days ago, and got lots of support from everyone on here.

I have spent the last 3 days in bed - a complete misery - won't answer the phone or the door, just sit and wallow in my own self pity.

It's so easy to do. There are no answers. Some days, weeks, months are crappy, and some are not.

Doctors don't always understand, as they can't feel what we are going through - sure they can see visable signs, and high HR, and low BP etc, but they can only speculate on how it feels. And when you are going through it day after day, week after week, it can become very trying indeed.

Just take each day as it comes and try to find something to look forward to, or set a small goal for yourself, and try and get as close as you can to it. Even if it's attempting to wash the dog or something. Baby steps. If you are completely bed-bound at the moment, try even writing something, or sketching - I find that helps me take my mind away from things, if only for a brief moment.

I was recently so depressed, that I was considering you know what, but have realised that live is for living, we have to find joy in the small things we can do. And take hope that one day soon, the doctors will be able to tailor a programme that suits our needs and lets us get on with 'normal' lives.

My thoughts are with you during this dark time. Please look after yourself, and remember that although it seems like it now, you won't feel this way forever.

[mom4cem]

I don't really have much else to add, the other great posts. You may not realize it, but you are coping. You have not given up yet, and I don't think you will. You will learn more and more each day on how to cope. Especially like Ernie said, once you go through the steps, you will find your coping mechanisims.

We all hit rock-bottom at some point and it really seems like it is a long way up, it may not go the way you want but you'll get out.

Have you been to the Dr. recently? If you feel like you are not getting the type of help and understanding you need maybe you need to look into someone else. Ask some friends, associates if they have any recommendations on a dr. who listens and is supportive.

Hugs to you ((())).

[Mrs. Glass]

Sorry you are having a tough time of it. I wish that I could just reach through cyberspace and give you a big hug. I think I am still in the denial stage of it. It hits me sometimes, but then I shrug it off. So far the hardest thing for me to do was to give up my drivers license and get a handicapped sticker. I cried all day, every time someone said something to me, I would burst out crying. I have so much guilt from being sick and my family making sacrifices for me that I just want to scream. I know that I am rambling on and on ,but my heart goes out to you and I just wish that there were words to take your pain away. But there is one thing that I do know. That this is probably the best site that there is for people like us. We can come here and everyone here understands just what we are going through. We know that there is that support for us. I truly hope that you start feeling better soon. Vanessa

Yesterday I cried all day and told my husband I can't so this anymore. I feel like crap all the time. My vision is blurry and dark, I have horrible burning and stinging nerve pain in my skin, my heart races all the time, even while lying in bed, I get terrible migraines. Nothing helps with this stuff. My whole life is falling apart and I am lying in bed watching in go down. I can't work, I can't be the Mom or the wife I want to be. And the worst part is, no-one or no treatment will make it go away. I have been in bed for two weeks now and keep hoping tomorrow will be a better day. That tomorrow never comes. I have been battling this for five years now and have finally reached my breaking point. I'm tired of being scared all the time. How do you guys keep going knowing that every days is going to be a day of disease and pain?

Sorry for the negativity, I just know you guys understand.

[BallroomA]

"We are a POTS family get up everybody and sing! Everyone can see were together as we FAINT on by" Everything will be ok....trust me.....I spent last week in that dark cold musty hole just wanting to die. Crying my eyes out on my fiance, apoligizing for being sick and not able to do everything most girls my age can do. I don't want to take the pain anymore, the fatigue, the glances from people who don't understand that I AM SICK I cannot walk up those stairs, I cannot make the trek across the parking lot in this weather. Life gets so frusturating and its so hard to realize that you cannot be that perfect wife, or the mom thats so involved. But you know what even with everything that is wrong in our lives, we have each other, thats so important. An we also have something so many people here don't a chance to reflect on life, a chance to teach others that things may go wrong but life goes on and you have to find some positive in that future life and go on with it. I can no longer dance, but I can help in small ways to secure my love for dance in a younger generation. What do you love? How can you ensure that either your kids or others keep that love going? You can teach your kids compassion, you can curl up with them and read stories, you can spend quality family time together looking at nature, or just relaxing those are things alot of people don't have time to do.

HUGS TO YOU email me if you want to talk about our miserable lives I'm always open to listening....I hope you see there is a light in our dark POTS tunnel.

[bamagirl]

You guys don't know how much your replies have helped me get through this terribly trying time right now. It helps to know when you guys tell me "I know how you feel", you really do understand. Thanks so much for all of your support and kind words. Please know when any of you are really low, I will be there to help get you back in good spirits! I love you all and wish everyone a safe and happy Thanksgiving!!

Let's not eat too much!!!

Bamagirl

[StaceyYount]

Tis the season I think for a lot of us to go through this I just can't take anymore. Today is one of those days for me. So I so understand how you feel. I send you all the strength I can and on days like this I go minute to minute if I have too. I come on here and scream and cry, I email other Potsies and they hear my pain and say I understand. So I want to say I understand and I am here for you too. You are not alone and somehow someway we are all going to get through this. If not on our feet then certainly at our fingertips!

Hugs and wishing you a better day to day!

Stacey:-)