Dont Know How Much More I Can Take...

[icesktr189]

I am finding myself crying everyday now because I feel so terrible. I dont think I have true depression, just really depressed about my quality of life.

I am going to a counselor, but i dont think they can help me. I am just so sick of this illness. I am TIRED of fighting with my body constantly. My support system is not great and other than my counselor and this site, i really dont talk about it. Honestly, if it were not for my daughter, i would not even bother getting out of bed each day. I am not suicidal or anything, but i feel like i have completely lost hope in having some type of a decent life.

I am so tired of not being able to leave my house. i went to target today to get my daughters bday presents (she will be one soon) and of course when i got home i needed a three hour nap. Then i wake up to feeling incredibly dizzy and so weak. I cant stand how i have to pay for everything, including a short trip to target.

You would think after three years i would have started to accept this illness, but in truth im just growing more and more resentful. Its just taken away so much and i feel like i will never truly be happy and enjoy anything again.

How do you all deal with this everyday? I see some have had it for 20 plus years. The thought of having this that long makes me sick to my stomach. I know there is a slight chance i might not, but there is a bigger chance i will. i just dont know how to feel normal anymore and just becoming more and more depressed/anxious each day.

[HopeSprings]

I know. I feel the same way most days. It is hard to accept that we aren't able to do as much as we once did and it gets so frustrating! But we have to come to some level of acceptance and try to manage it from there. Treat yourself gently and do the best you can. There are days when I am feeling just a tiny bit better and it gives me hope, which helps me to continue on. I have two small children and like you, if it weren't for them I think I would be tempted to just give up. Not suicide, but I would probably just lay in bed everyday until a cure was found. They force me to get up, get moving, get out and live. And it's hard -- sometimes REALLY hard just to do the little things to get through a day, but I always get through it. And honestly I can usually find something to laugh at or smile about -- there are always small moments of joy. But I understand we don't want to just "get through it" - we want to live, to enjoy life. The one consolation is at least we aren't alone. It took me YEARS to get a diagnosis and that whole time I felt completely alone, stuck in this weird/debilitating illness that had no name, with most Dr's not believing me and my family & friends baffled and probably thinking it was all in my head. It's just nice to have a place to come and talk with others who know exactly how we feel. I have most of my hope in research. There are many Doctors/scientists working on this and I am really optimistic that they are going to figure it out - hopefully before we're 90! Plus all of us who are constantly searching, reading, researching -- we will eventually figure this out I believe. Sorry I don't have more words of wisdom except to say hang in there, be gentle with yourself and try not to lose all hope. This can't be all there is for us.

[songcanary]

Dani, are you on any meds? I felt the exact same way for three years until I started on doxepin, Armour thyroid and forcing fluids. I could no longer work at all, and I couldn't even keep up the house. I cannot imagine caring for a baby in the shape I was in. I could barely feed my dog.

It is so easy to say just keep trying, that gets old after awhile, I know because I hated hearing it. BUT it did help me to have itty bitty goals. Some days I was happy just to have gotten out of bed. This may sound silly but I did it for my dog and my parrots. They needed me and somehow I found the strength to care for them, even if minimally. My husband, sad to say, did not get a clue until I started dragging him to my dr appts, mostly because I was so weak. THEN he realized hey, maybe she really IS sick. Now I have good support from him but it was like pulling teeth. Anyway, perhaps you need a med adjustment, something so simple can make a huge difference. You couldn't pry my meds away at this point . Hang in there for your baby and my very best wishes to you.

[firewatcher]

Dani,

Motherhood is hard whether you are sick or not. You've had over a year of sleep deprivation and providing care and food to an infant. Like everyone says about pregnancy weight, it took nine months to put it on, it will take nine months to get it off. In all honesty, if you were sick before your pregnancy, you will take longer than most "normal" women to recover. Your body is still adjusting to not being pregnant and your hormones are probably still wacky. Be gentle with yourself and cut yourself some slack.

Be well.

[Sarah4444]

I know exactly what you mean dani, this is so hard.

Once I finally figured out what I had had for so long, at first it felt so liberating and amazing to have a name for all the strange symptoms I had been hiding as well as I could. But then I realized that there were no easy answers or cures, and I got really angry again. I feel like my life is being stolen from me and it's so hard that most medical professionals can't even relate to what we feel and how severe our disability can be. I am trying my best to cultivate patience, to educate my doctors and to enjoy the time I have with my kids rather than always feeling left out of everything.

At least here there are others who get it, who know what we are up against on a daily basis. Hang in there.

[rapid_reader]

First post and feeling a tad uncomfortable.

Before I go any further let it be known that I say this even with a great medication setup and a kickass psychiatrist...

I have been going through the same exact thing recently. I am just fed up of dragging my body around. I'm in college and I do really well but I wonder sometimes if it is even worth it. It doesn't help that I can see all the other girls on my floor make room for a social life and still finish their work. They take so much for granted. I had somewhat come to terms with everything a while ago it's just ever since college I have so mad frustrated and resentful with the POTS situation.

I have had POTS since I was really little I can just imagine how much worse it is for those who can remember a time when this wasn't in the equation. Also while this forum has been helpful for me it has done a little damage. I see other people have been living with this a lot longer and have also been worse off. Then I read the posts on here... it is hard to think that my sex life could be over before it even begins...this thought just reminds me of the other things that are or will be impacted at some point. I keep reminding myself that every individual is different...but still.

All of these things make me want to throw in the towel and give up at trying for a better quality of life and quit while I'm ahead. When I push myself I just get even more sick yet what I can do while not pushing myself does not consist of a lot. I'm 19 I should be experiencing the best time of my life right now and instead I'm sitting on the sidelines watching everyone else. It is so discouraging and I ask myself all the time Wait! Why am I even doing this to myself? I always have this drive to prove that I can be successful despite the hand I've been dealt. This drive won't go away and at times I believe this will be my downfall. I'm still fighting...I have no idea why but I'm a person who just goes with the flow, even when it is known to be unpleasant.

I would honestly worry someone with POTS if they haven't felt like this at some point. At some point in time it's bound to happen, maybe even more than once. It's a natural reaction to a condition that presents someone with such a cruddy life situation.

Just remember you are not alone! Take comfort in this thought, I know I do.

[Guest letitbe]

((Dani)) I am new!

I have been reading for a long time but?

Have had trouble for many many months with the cyber aspect of getting to be able to use the site and NINA and recently Rachael, have been beyond helpful. And they know I thank them.

It's hard when they do not work as NASA or for Mr. Gates to figure all this out but I have been unable to participate till this moment.

I hope it lasts.

I saw this topic and since I cry all the time, it was normal for it to make me cry.

I too have HAD IT.

I have watched the SPEED of my own deterioration these past 4 and since the late 80's/early 90s years but mainly this past year. Quality of life? What life?

I do not and will not listen to the "it could be worse " line because I am not dumb but we are us here and we know how aweful it is. We are sgharing about us. I will gladly talk about the woes of the word as well but this is US.

Yet we have these smarts and abilities no longer 'able.'

I am so so very sad. So very sad.

((Dani)) I am with you here and I do not care if I sound weak and pathetic. And I always try and try and look and look for answers and new practices but my biggest problem has been applying the skills to make it better when I have no support. And not being able to stand makes those skills invisible.

Not being able to drive to a mini-mart is not something I imagined for my life.

There is so much I want to share, ask and give but this is to honor the thread and say I KNOW EVERY WORD YOU ARE SAYING.

Add the sadness, and we are so so very broken. I had a huge surgery 1 year ago yesterday. I was literally alone for it and being alone for the anniv. was worse. I am proud of how I handled it all last year.

That did it though for worsening all the rest. I saw things happening for myself when recovery was supposed to really kick in and the opposite happened.

The anger and aggression part of that, is now I am scared that if we want, and are willing to do the work for better wellness, are you beyond that betterment?

I have been on a couch for a year. I barely get dressed. I have been fit since the early 80's.

I had a life. I also have had POTS since birth and recall symptoms as early as 1st grade so I can look at it's worsening.

But this I know: with every trauma we get, phys or emotional, we get sicker. That is in the data.

I am so so relieved to be able to finally post and I know it is long but I grieve for me, for my dreams, for my IQ and it's presence but unable to be utilized, but for us all as a collective that are forgotten and misunderstood.

With all the love I still give each day to others, I give to all of you.

[mwise]

Dani,

Just know you are loved by all of us and that little girl of yours. We all send you great big hugs. Hang in there. Take it one day, one hour, one minute and one second at a time. We all know how you feel and have been and at times are still there feeling how you feel. T

There were days when I was completely couch, chair and bed bound that I would not only cry but get angry at God and the world for this disease. Hope was the last word I wanted to believe in or even hear. Than I would have a moment of feeling normal and all would be right again. I would tell myself that I am beating this disease and will keep fighting to get better. Talking with a friend of mine who does counseling helped me set little goals and accept that I will have good days/times and bad days/times.

It was good to hear that you were able to go to Target. I am still working toward being able to go out to stores even if it is for a short periods of time and a use of a rollator walker. I also feel that your hormones probably are still out of sync from the pregnancy and caring for an infant is exhausting. So don't be too hard on yourself. You have a lot on your plate which is stressful enough. If you are open to medications, there are a lot out there that can help you have hope again. Remember you are not alone. We are here for you and just take it one day, hour, minute and second at a time.

[Guest letitbe]

Have been having the worst 24/7 skin sensitivity ever as well. Creepy crawlies and general unease. Bad creepy crawlies. Frightened but of the feelings. Not paranoid type, just creepy crawlies. Those are pots. But also from Chronic fatigue, and woman body changes so it's hard when we can not navigate symptoms.

((dani))

[Lovebug]

Hi Dani! I'm so sorry you are feeling the way you are. I have been there but thankfully I'm somewhat better now. I have bad days but there was a time where every day was bad and (if I was lucky) I had good moments sprinkled throughout those bad days. What has helped me is: fluid loading, a tiny-tiny dose of beta-blocker, a TINY dose of Celexa for my pain, and my husband sleeps in another room so I get enough sleep. I can't believe how much he was affecting my sleep but I can tell a difference now.

What you need to do is let yourself grieve. Go through the stages (you may fluctuate b/w them and that is OK). But we have truely lost something when we got this illness...ourselves!

Sadly, one of the losses I'm dealing with now is the ability to have children. This disease has taken away my desire to even try. I can't imagine what you are going through with a 1 year old. If I was not diagnosed with this, I would defnitely try but as it stands...there's no way.

I pray that you will get better and have the strength to get through the trials of this illness. HUGS!!!!

[stacdliw]

In one way, I feel luckier than many of you all this board. I am 57, with no children at home, and I'm on disability with no fiananical worries. Therefore, when I'm sick, which is at least 5 of 7 days, I can lay in bed all day and don't have to worry about a thing. I truly don't know how I would function if I had to care for children or had to work. I literally don't know how those of you that do it find the energy. I admire each and every one of you! For the past 16 years, I have battled Chronic Fatigue Syndrome and Gastroparesis, but undoubtedly, dysautonomia and POTS have been the most disabling.

However, despite having the luxury to just to be sick, I still struggle each and every day with this disorder. I've always had a positive attitude, but days of feeling badly can make anyone depressed. I, too, miss the life I once had. However, I have adjusted to my "sick" life and take life one day at a time. On the rare occasion I feel well, I make the most of that day.

My biggest concern right now is that my youngest daughter is getting married next year. My fear is that I'm not going to be well enough to participate in the wedding planning or I'll be so sick that I won't enjoy the whole experience at all. This disorder has already spoiled vacations and holidays, I will be angryif I can't enjoy my daughter's wedding.

Bev

[sandymbme]

((((Dani))))

All of us who battle this for more than a short time (and I admit it, I am insanely jealous of the people who merely have a POTSy period, and eventually got better!) have battled grief, depression, and despair in addition to our illness. It is NOT fair, and it is NOT easy. I have lost my marriage, my job, and my ability to have children. (Long complicated story, but just had an emergency hysterectomy in January.) There are days where I can't see the point of a life struggling to get out of bed. I have been dealing with this for over three years now, my birthday is always horrifically bittersweet because It all started with waking up on my 31st birthday with a migraine that ended up lasting 9 months straight. I have lost so many of my favorite passtimes and interests, because the results are too much for my body to handle in my new reality.

So I will be the last to placate you with pointless platitudes. I am incredibly grateful, as I have an amazing support system. But that was not the case just three years ago. I built my system (with the exception of family) AFTER I got sick. Some was talking to people on here. I joined a really active church, where if I can't go to them, they come to me. I made an effort to seek people out who were positive and supportive. I may not be able to help my friends with babysitting their kids or cleaning their house, but I can offer a sympathetic ear, an open mind, and near limitless ampathy. And the one up side of my insomnia is my friends know they really can call me any time, I'm usually up!

I try really hard to focus on what I can do, even if some days my list is as short as "I fed the cat" or "I ate some of the meal Mom brought me". (Things have been really bad health-wise lately, so sometimes I really have to struggle to come up with something, but I try!) I also take comfort in the fact that I am pursuing every single avenue available to me to try to improve my health. I am compliant with Doctor's orders (as long as they don't conflict important standing orders!) and have made every conceivable lifestyle change I can. It is anything but fun, but it makes me feel like I have some control in all of this, and I can take comfort in the fact that at least I am not sick because of something I am choosing to do.

I will keep you in my prayers, and keep opening up on the forum. Sometimes just being able to voice the despair among people who really do understand can help you to get through the moment.

Sandy

[Brye]

My kids are the reason I get out of bed for sure! Building a support system has been critical for me as well. I don't have family here. I've joined the local MOMS club and that has been a great resource. You should see if you have one in your area! It's a support group for stay at home/part time MOMS. I think you can look this up in the Yahoo group sight. This has been a life saver for me. I have a lot of guilty feelings about my time spent with my kids. They are happy, and healthy though and will be just fine. We enjoy our time together, not always playing at the park like we would like, but playing in the driveway at least. I'm exhausted daily and there are so many reasons for the fatigue. Just being a MOM alone is exhausting.

I developed POTS almost 3 years ago after baby #4. Things have gotten better gradually. Not where I want them to be but I'm much stronger than I was and have better HR control. Hang in there. Try to enjoy the time you have with your baby. It does get easier as they get older and start to become more independent as will.

I'll be thinking of you.

Brye

[lmt033167]

Dani I'm so sorry you and everyone else here is feeling like I do. It stinks and it's just not fair is it? We don't ask to be sick and I think most of us here would rather be out living our lives having fun like we did before we got sick.

Some of us have multiple problems and can relate to each other or at least sympathize with what we're going through. It's ok that you feel bad because you no longer have the life you were used to; feel it and be ok with the way you feel. I go through roller coaster emotions - anger, guilt, hurt, etc then I start feeling bad about myself thinking all I have to do is just get the energy to get "over" all my issues...then I push myself too hard and end up in bed for 3 days instead of just a few hours, then I kick myself because I'm setback so far.

I missed buying any gifts last year for my children; luckily my husband did it for us and would call and ask what I thought about certain gifts. I can't drive at all anymore so I'm stuck at home and that angers me like I can't tell you - makes me feel hepeless. My youngest son is Autistic which is stress enough since I'm the only who's taken care of him until I got sick, my husband has learned the hard way about how difficult it is to care for a disabled child, now the poor guy has to take care of our youngest daughter and me too - I ask him often if he's overloaded and needs to talk.

Now, on top of my ANS problems, heart problems, Endometriosis/Adenomyosis and I just found out my problems female problems may be cancer. The stress of hearing this from my dr put me in a tailspin and I spent all wknd in bed and so tired I feel miserable.

I'm so thankful my husband bought me a new laptop and I can sit in bed, on the couch or recliner and "talk" to others who know what I'm going through. If I didn't have my support groups and friends who keep in contact online I don't know what I would do.

You're not alone and if you need to talk, vent, however you need to express it - it's ok =) we're all here for you and hope you feel better.

[Nikki]

I feel the same way you do. I try to stay positive for the most part, but there are always times when I have constant BAD dizziness/vertigo for weeks on end, sometimes months, and it really is just too much to deal with. I guess I just keep hoping for things to get better. I always pay for things after I do them too. Even just a simple trip to a relative's house can do me in just because of the car ride alone. I don't really know how to handle it better cause I get depressed myself..I think we just have to take things a day at a time, sometimes an hour or even a minute at a time lol..I do really miss doing the things I used to be able to do. Even just going for a walk around the lake with my fiancé, it was something so small yet it made me so happy to just do something like that with him. I think if nothing else, dealing with this really teaches us to appreciate everything in life. To appreciate the good days we do have (even if they are far and few) and just to be thankful for the small things we are able to do, even if we do end up paying for it later.

It's nice to have a message board like this so you can talk to other people who are going through the same thing. You're never alone with how you feel. I really hope you feel better soon!

[icesktr189]

Thank you all for writing back! Sorry i have not been on I have had an awful head cold.

Honestly I dont know what i would do without you guys. You all listen way more than my mother or fiance do. I am trying to go through conseling so I wont loose my mind :]

Thank you all again. It really helps to hear your stories, and as horrible as it is that you all have this to, also to know i am not going through this alone. Most days it feels like it though

[lmt033167]

sorry you've had a cold on top of all your other things going on

if I didn't have my support groups with those of you who understand, I may have fallen apart a long time ago - I can't thank my friends that' I've never even met enough and show how grateful i am for the support and love everyone shows =)

I found this on someone's journal and it was exactly the words I needed:

Do you know what the relationship is between your two eyes?

They blink together,

they move together,

they cry together,

they see things together,

and they sleep together,

but yet they never see each other;

....that's what friendship is....