Hit a brick wall..

[wareagle]

Warning..this is a vent/whine session..read with an open mind!

I don't know what to do..lately I just feel like giving up any hope of recovery. I don't mean to whine, but I really need to vent! I first became ill in May 2003 at the age of 27. I had to quit my job as a Speech Pathologist and after 15 mths. I was dx. with POTS. I've been on meds. for aprox. 8 mths. I'm only able to tolerate VERY small doses of florinef and clonodine. At first, I felt things were getting a little better, but lately nothing seems to help.

I have not left my house (except for doc. apts) in 1 1/2 years. I just always feel so unstable and offbalance, and even though I don't faint, I'm scared to go anywhere. I've thought of using a wheel chair, but even sitting down I feel "dazed" and unsteady.

I feel like such a WIMP!! I know that most of you at leaste go for short walks or run quick errons...even take trips and go to school/work..I wish I had your drive and ambition!! (I used to, but I seem to have lost it somewhere along the way)

I know that I have to somehow start reconditioning myself and have been reading the related posts. I've also thought of consulting a nutritionist, but I've just been so tired. I know this sounds crazy..but a part of me is reluctant to try the exercise and nutrition angles out of fear that they won't help and then I'll be out of options and have to accept that this is it for me. I'm just scared that I've been down sooo long that it's impossible to pull myself up again. It's so hard to hope/imagine that things will get better when I can't remember what it felt like to be normal.

I'm 29 now and have been living with my mom for almost 2 years. Most days I try not to think of the future or dwell in the "why me" mentality, but every now and then I just can't help it. I don't have a husband or children and b/c of this condition I feel like I'll never have that opportunity. I'm scared that someday I'll be alone and won't be able to take care of myself. I know this sounds so depressing but I just needed to say it and get it out!

I know that things could be worse..I'm very fortunate to have my mother and great friends..it's just hard for them to understand..that's why I came here to express my doubts and fears. This whole experience has been humbeling and bizarre. Even after 2 yrs. I have moments of shere disbelief..I can't believe this has happened!

I know you all face your own battles everyday and I thank you for taking the time and energy to read my rant and perhaps respond. As always, I'm open to any advice or personal experiences you'd like to bless me with!

Feeling blue at the beach,

Michele

[dream02]

I totally understand how you feel. I didn't move in with my mother...I've moved in with my 21 year old son. It's hard to do when you feel you should be self supporting but can't do it. There are days I'm lucky to walk from the bed to my recliner but I'm lucky that I still have some good days too. I have found it helps to just live in the moment as much as I can. Thinking about the future is to stressful and is unproductive since I don't know how I'll feel in an hour much less next week. Also I try to set myself daily goals depending on how bad I'm feeling. That way I can feel I accomplished something during the day even if it's something small. I don't know if this helps but know my thoughts and prayers are with you!

Denise

[MomtoGiuliana]

Michele

What beach do you live at?

So sorry it has been such a battle for you. I can understand feeling defeated--I have had times when I felt that way too. You know, May 2003 was not a long time ago, in terms of POTS. I was diagnosed in Feb 2003. I am really well now, but everyone is different in how long it takes their body to get back to a reasonable level of function. I have read and been told by my specialist that the AVERAGE time for "recovery" from POTS is four years.

I think you have every reason to believe that you are going to improve. I know there are people who don't, but there are many people who do.

You are NOT a wimp. If you feel unstable, dazed and off-balance that will certainly undermine your confidence tremendously. If you feel weak and exhausted, how prudent is it to run errands to go on trips? Don't feel you have failed yourself.

Can you try to start with some very modest exercise? Again and again my specialist pushed exercise. He said there is nothing wrong with your heart and POTS will not kill you. Some people go to physical therapists, which can be helpful. But, you can also try to start with some very short, floor exercises (like 2 minutes a day). Move up slowly from there. Anything you can do to strengthen your legs or your abdominal muscles should help your symptoms. Deconditioning caused by lack of normal movement and exercise will only make you sicker, unfortunately--or in any case, will impede recovery.

What other medications have you tried? There are a slew of medications that help POTS and maybe you haven't hit the right combination yet. What about fluids, salt, compression hose? Along with exercise, my specialist ALWAYS asks me how I am doing with keeping up with fluids. Initially he recommended 3 liters a day.

Some books I recommend: When Things Fall Apart by Pema Chodren and Spontaneous Healing by Andrew Weil.

I do understand your fears. I think you have every reason now to TRY to be hopeful AND to do whatever you can to help yourself.

You might want to consider counselling to help you through the difficult emotional aspects of this illness. There are specialists in chronic illness who can help.

Take care,

Katherine

[LindaJoy]

Hi, Michele. I am so sorry to hear that you are feeling so bad, both physically and emotionally. I have been there before, as well, so I can relate. I have had POTS symptoms most of my life, was diagnosed (unofficially) ten years ago, then officially (with TTT) just last week. My earliest really bad POTS episode happened when I was 27, 13 years ago. I used to just lay in the bathtub and cry, I hurt so bad (I also have fibromyalgia) and was so scared. I've had a few severe bouts since, but this time has been different. I didn't know about the increased salt to the diet, or the compression hose (which really DO work!!), or Gatorade and increased water, and staying out of the heat, etc., until this last time, when I joined this forum. This latest bout, which came on after I had the flu and has been with me since the first week of March, has been distressing, has made me more than a little depressed at times, but also hopeful as I seem to be doing better this time around, just using the natural things that I learned from everyone on this forum. I've learned, too, to not push myself, just go at my own pace, depending on how I feel. I don't do stairs, and I don't hesitate to ask for assistance in doing something that I don't have the strength to do by myself.

I agree with Katherine on so many points: compression hose are awesome. Have you tried them? And, starting to do just 2 minutes of maybe leg raises a day would be great to slowly get you back into moving without overdoing it. And, I was thinking, as was Katherine, that speaking with someone about how you're feeling may be good to help you deal with living with a chronic illness. It is depressing that you have to live with symptoms that are harsh and scary. But, just as talking with everyone here helps, maybe you can find someone there, a professional who deals with depression, to listen and help, as well. During the one episode I had, I developed an eating disorder along with it. Oh, it was not a good time in my life! It took me six years of talking with my therapist, on and off, to get through the depression, but it really has helped me. I still deal with the POTS, and some days, I still get so upset and depressed, but I know it's not going to kill me, and I will have some good days, and I will have some bad, which makes me enjoy the good all the more.

I think POTS is about state of mind as much as it is state of body. Emotionally, it is so easy to let it overcome us. I feel so badly for you. Please, just know you're in our hearts here, and please write any time you need to vent. We'll always try to encourage and support, and help when and if we can. I, for one, don't have all of the answers, since I really just started learning about POTS myself, but I'll help with what I can.

Sorry to be so long-winded. I just feel so badly that you're having such a rough time. I remember when I was, and I want you to know that there is a rainbow on the other side of POTS and depression. It just takes a little bit to find it sometimes. And, keep in mind, you're never alone in your search.

Love to you, Michele. LindJoy.

[dawn]

Michele,

I understand how you feel about not going anywhere. The more I stay home, the more anxiety I have about going anywhere. I had to quit working in October and it has not been good for me emotionally. I MAKE myself go do something (shopping or lunch) about once every 2 weeks (which isn't enough). It helps if you go with someone who has a sense of humor and takes our symptoms lightly. I have a friend who I will say "I feel dizzy" his response is "How can you tell?" I've had to lay down in stores with my heart racing out of my chest and everyone walking by me but I got through it and people have been kind. It's always hard convincing them not to call an ambulalnce. My husband always preaches, crank up your sense of humor and I think he is right. I'm not minimizing how you are suffering. I am so depressed sometimes I can hardly get out of bed. I no longer drive because of syncope. But I know spending alot of time alone isn't good. People need people.

As far as exercise, I have good intentions. I don't follow through. Don't give up on recovery, I was really bad 11 years ago for 2 years. Then I started working part time then full time for the next 9 years. Have you tried any of the SSRI,s sometimes they help. I'm still counting on a remission again this time. I picture myself healthy and active. Don't feel alone or like a whimp, this is a difficult condition to deal with. Don't be hard on yourself. Believe in yourself and treat yourself with only kindness.

Dawn

[Radha]

i can totally relate, and never feel bad for what you are feeling, we all have a right to our feelings, there are no wrong feelings, i live with my parents, my mom is my main caregiver, and i am also 29, and think i will never have any relationship with a man, never get married, or have children, and i havent left my home in more years than i can count, can barely get into wheelchair, and travel to the den! so i totally understand about not being able to leave the house and how everyday is a mental battle against the overwhelming depression, like others said, it helps not to think too far into the future and to try to count your blessings, instead of dwelling on all you dont have, easier said than done!, and there will be days that the depression will take over, but just know that those feelings do pass, even if the physical stuff doesnt, hope you have brighter days soon,

radha

[morgan617]

Michele, a big day out for me are doctor appts too. I know it just seems so over whelming some days. I have been pretty much home bound for 3 years now. Somedays are okay and some days are just not. I know I am heading for a big kaboom because of the recent events with my son. My adrenaline has been full force for days now, so when I crash, it will be for weeks. My meneires has been driving me crazy too. I can't drive anymore. It's amazing the things we take for granted till we can't do them anymore isn't it. I am so sorry you are in this terrible valley and it feels like you will never get out. But you will grow accustomed to things and will discover there are some things you can do. You may feel useless right now, but even coming to this site and giving someone a little encouragement makes you useful and special. There are lots of valleys in this journey. but there are a few peaks, small as they may be. I was thinking, if I wasn't sick, I may not have been able to be there for my son and friend. I guess sometimes when I look hard enough I can come up with a reason why this has happened. Hang in there, and know there are many people here who care for you and also know exactly how you feel. And vent away! morgan

[geneva]

Michele, when I first became ill, I remember the feelings you describe so well and I am so sorry that you are down in the valley (as someone so aptly said).

Leaving the house always made me worse and I would be near collapse wherever I went so of course you stop wanting to leave the house. It was a long time before I was able to learn what the single biggest trigger for why I felt so sick away from home was....overstimulation. My brain would over react to any stimulation -- the light outside, the dark, traffic motion and noises, flourescent lighting in stores, and busy environments period. With the help of my doctor who wanted me to try getting out more, I agreed to try a very small dose of Ativan 45 minutes before going out in the world. It worked for me (although benzos are highly controversial...see old posts for more discussion) What Ativan did was allow me to go to the grocery store on my own, attend church, go to friends house and 3 years after onset, take yoga classes. I still spend the majority of my time at home but knowing I can get out really helps. I share my experiences because I hope that you will find improvement in time. For me, 4 years was the beginning of noticeable improvement. Believing change will come is important...don't give up Michelle!

I agree with Katherine that 2 years is not such a long time in the course of POTS, although it sure seems that way. When I have those moments when I worry about what I won't be able to do somewhere down the road, I try to remember that before POTS, I would never have imagined THIS turn I have taken, so maybe another dramatic turn for the BETTER is still out there for me. I hope that it will be for you as well.

[wareagle]

THANK YOU..THANK YOU..THANK YOU!! I really appriciate all of your words and I've found hope in them. I know we all have out ups and downs..thanks for reminding me that I'm not alone!! Every now and then I just need someone to kick me in the bum and remind me that there is still happiness in this life!

Love to you all!

Michele

PS. Katherine..I live on the Gulf Coast..near P-cola FL..it's a beautiful stretch of beach..even after hurricane Ivan!

[MightyMouse]

Hang in there; we all have good periods and bad periods. Some are longer, some are shorter. Now way for me to predict--but I have to try to roll with it regardless.

I hope you find a way to cope. Nina

[DancingLight]

my dear wareagle!

i just wanted you to know you are not alone in your feelings...

i want to type soooo very much more to you, but am still in the 'ol potshole...

but, since you are there too...i wanted to at least say howdy and that your vent was heard out here in PA!

i will try to type more to you one of these darn days...i hope sooner rather than later...

until then...please know i am thinking about you so very much and appreciating your reaching out to me after surgery. i was so moved.

i hear you on husbands, kids, living with your mom, etc. etc...it's very up and down for me on these things too...but you are right, people here will help remind you what is beautiful about this life here!

hugs, emily