Just Need To Vent. Sorry. Don't Read If Don't Want To Get Depressed.

[LindaJoy]

Hi, everyone.

I'm sorry to be so down and to come here with it, but I have just about had all I can take. I know many of you have been with me since the beginning of my illness, and you've see all I've gone through with trying to get a diagnosis (still don't have one), with trying to eat each and every day, with just trying to survive.

Today is one of those days I just don't see any light at the end of the tunnel, and I've run out of hope and don't see any sense to continuing with any of this.

Again, can't eat without terrible reactions, am on a clonidine patch that seems to just be adding its own symptoms to my pile of existing ones without really helping my problem, can't stay away from the toilet the diarrhea is so bad, am nauseous, in pain, have yeast infection and sore bum from all the diarrhea, etc. I just feel like absolute crap and can't take it anymore.

I was standing in the shower this morning, picturing myself talking with a therapist. I've been to enough of them to know their questions by heart. I heard the imagined therapist say, "Linda, what do you do for fun? What makes you happy?" And, you know, I could only think of one thing, and that's the few hours every other month I spend with my granddaughter. Other than that, I don't have one thing that makes me happy. And, I never have fun. Just coming to that realization made my depression even worse.

When I was in the hospital this past week, again, for ten days, the doctor suggested that I talk with a therapist. I laughed and said, "Been there, done that, won't help." She said, "Why won't it help? A therapist can help you to cope." I thought, "Cope with what? That every minute of every day is a struggle, that I never feel good at all anymore, that I have to spend most of my time just trying to survive, just trying to find something to eat that won't send me into terrible symptoms that I just can't take anymore? What can a therapist do for me anymore? Talking just won't get it, or anything, anymore."

I told my husband that talking with a therapist anymore, for me, is futile. It's like holding a loaded gun to someone's head and having a therapist talk them out of the anxiety the situation is causing them. The answer is not talk, it's taking the loaded gun away. Food, for me, is that loaded gun. All the talk in the world anymore is not going to take away the fact that every time I eat, that food could send me into an episode that feels like the end of the world for me, and most times does. I just can't handle any of this anymore!

And, what makes it even worse is that I have no one I seem to matter that much to anymore. To my husband, I'm an albatross around his neck. To my kids, I'm no longer "Mom" so they've made other arrangements for maternal support. To my family, I simply don't exist anymore. And, I have no friends. I am not exaggerating my relationships.

Again, I look at my life and think, "Why in **** am I putting myself through this every day when I truly have nothing in my life worth suffering for?"

You all here have been my life-line for 7 years. Whenever I needed to ask a question or just cry, you all have been here. I don't want your sympathy now. I just needed to vent to people I know give a ****. You don't even have to respond. I know most of you have been there, done that, too, and I just don't know what to do anymore. I've lost my heart, my soul, my faith, my dreams, my hope, and I don't know, really, what I have left. I can't see much of anything that's good.

I know this has to be one of the most depressing posts ever put here. Moderators, if you feel this is too depressing, please feel free to yank it. I don't want to upset anyone, esp. newbies. For all you newbies who don't know me, don't worry--I have more than POTS that's making me so sick, so if you have POTS, you won't necessarily get like me, so please don't start to worry. You don't need that!

Anyway, thanks for bringing your hearts and compassion here every day, for all of us to benefit from. You all have kept me going and trying for so long, I thank God for you.

Take care, everyone. I hope there's a cure for all of us one day.

Lindajoy

[issie]

Lindajoy,

I'm sorry you have hit one of those lows that we all seem to go in and out of. This chronic illness is maddening and so taxing. Especially, when we don't have the answers we so desperately seek. We've all had periods of wondering why we are still fighting - but, it was created in us to want to live. Just not live in an imperfect, sick and dying body. That wasn't God's original intention for us - and still isn't what he wants for us. If you look at my profile - you will see some scriptures that give me comfort and that show that God intends to make us well and whole again. I believe that with my whole heart and having that knowledge and faith is something that keeps me going. This isn't the only life we have and there will be a day - when we will no longer be sick and we don't necessarily have to die to have that - the Bible says it will happen right here on the earth for mankind. I'm so looking forward to that day.

If you want to vent, PM me. I'll be glad to talk to you. I'm sorry you've hit one of the horrible lows - you've been through so much! I'm hoping for some answers for you and for all of us. It's nice to have this forum to vent how we feel and others to understand when we are down. Some of us are so much more complex and complicated and doctors are in the infancy of some of our illnesses. It's us that are pioneering and seeking answers - that will make the way and answers for others in the future. We are contributing to the answers - just wish we could get them for ourselves.

HANG IN THERE! You're not alone in this ---others are here for you.

Issie

[corina]

Linda, I'm so very sorry you're feeling so down. I do understand that talking to a therapist won't cure you (at least not physically), that's what I told my doctors too and asked them to help cure me physically knowing that that would help emotions too.

In the end I did need a therapist and found myself a haptonomist who helped me deal with my issues and sort out problems. It was the best thing I decided to do for myself. When I thought I needed, at my own time.

I want you to know that we are here for you so feel free to vent. I really hope that will help you. You need friends to listen to you and understand. In the end that might make you feel a little comforted, knowing that you're not alone.

Take care Linda and try to hang in there!

[rubytuesday]

Linda,

I'm so sorry you're going through this. My grandchildren have been my greatest therapy, too. My DH said in his observations I always seemed better when DS would bring his Italian greyhound over to visit (he wanted us to take the dog he'd rescued. I loved the little thing, but knew I couldn't care for a dog and when I mentioned it to my cardiac specialist, I was told flatly, no way. It was a relief having not to make the decision for myself as I wanted what was best for the dog. I could give him love but not reliable adequate care--especially in heat and cold and rain). When I'm down, I also look to distraction with an old movie or a good comedy or funny movie--no downers for me, or read a good book). Last summer (before learning about this OH/ANS failure, I honestly thought I would wither away and die. I got down to 86 1/2 lbs with my nausea and bathroom days. But they are still working on things with me. They've added SSRI, Lexapro to help bring BP up and try to even out GI issues. I do still have some nausea--seems worse at bedtime for me right now. It's also lowered the HR to mid-50s. And they tell me there are a lot of things they can keep trying. Summer coming scares me to death. I've armed myself with a cooling vest, a soft helmet, I've picked up the fluid intake and taking a Rx nutritional sustanance. I carry a phone and water with me wherever I go (but I don't 'go out' very much--maybe to eat out once/week or get my hair done every 5 weeks or to doctors and church). I feel so blessed to have DH who is able to get groceries and help with meals. I am blessed to have those grandchildren in my life. Other family cannot be relied upon and DH travels so I have to be as self-sufficient as I can. I may have a day I only shower and change nightclothes, not even feel like getting dressed when nobody's home. I rather enjoy being able to just listen to my body and roll with the flow. I had to take a disability retirement due to a bad accident that left me with permanent damage and pain 24/7 and nothing they can do to repair it/help it without giving me stuff that would make me sleep all the time--no thank you very much. I nap enough with the narcolepsy.

I am so sorry you are going through this. I am wishing you peace and sending a virtual (((HUG)))

[MomtoGiuliana]

Feel free to vent, sometimes that is needed, and that is one of our support roles here. And even though your issues are different from many here, we do understand how significant your problems are. So sorry things have been so rough for you for so long.

I hope you keep trying, with a therapist of some sort. I know a helpful one can be hard to find. Perhaps it might help both you and your husband to go together to someone who can help you talk to each other.

You're so lucky to have a granddaughter and that is wonderful that you can spend time with her.

Take care.

[E246]

Really sorry you feel like this. Hope things improve for you soon.

Take care.

[songcanary]

Three years ago I was saying your same words to myself. I don't know what your other illnesses are, so maybe I'm clueless here. But I found such wonderful comfort in this support group and I hope what the others have said will help you. At my worst, I openly told my husband that I wouldn't mind not waking up tomorrow. His response was to say goodbye in the morning and 'I hope you feel better'. Seriously?

Cling to that grandchild. My grandmother raised me and when I was 10 she was in a very bad car accident that put her in a coma. She survived, but not because the doctors thought she would. She told me many years later that she had a vision that she needed to stay alive to raise me. I mean, she saw the white light and everything. And I believe every word she said because she was not the type of person to exaggerate. Just saying that your granddaughter will always remember the kindness you show and that is more valuable than anything to a little kid. I hope that thinking of her will keep you going until you can feel a little better. I am very sorry for your situation right now. Take special care.

[Dizzysillyak]

Hugs .. Many of us totally understand where you're coming from. It can really **** to be chronically ill but we have to make the most of it. I feel like I'm always looking for ways to boost my mood.

I was where you're at in 2005, when my gp put me on the elimination diet. Looking back, I was so sick that I don't know how I did it. Basically I was told to stop eating the foods I was eating all the time. This meant no common food intolerances like gluten, dairy, corn, soy, eggs, chemicals and anything I knew bothered me. AND to only eat bland cooked foods that were easy to digest. Nothing

fried.

I bought some rice protein powder and made smoothies too.

I'd use desitin or organic wet wipes on your bum for irritation. Also avoid acidic foods like tomatoes and oranges.

In my experience, the yeast can be cured by taking candidase + a yeast killer like pau d arco, raw garlic or tataric acid. There are other products available too tho.

I found good probiotics help my digestion too. Metagenics, megaflora, blue bonnet, etc have worked for me. Actually. If it were me, I'd start with taking probiotics 4 times a day.

Just so you know, this wasn't a quick fix for me but I've heard it didn't take as long for some. And eating the bland foods hurt too for at least 6 months but as you can see it's worked so far. Kow .. I moved on to the paleo / wahls diet in jan and eat mostly raw foods now.

Hope this helps .. D

[skiberthoud]

Lindajoy, I am so sorry for how you are feeling. But yes, let it out, vent it out. We are hear to listen, support and hopefully encourage. Losing hope is a terrible thing. I remember when I was at my worst and I wondered if there was anyone who could help, my mom would tell me we just had to find the right person who could help. It is like finding a needle in a haystack. I'm sorry it's been so long that you have struggled. I know you are tired and discouraged, but don't give up! You have talents and value, even if you can't see them right now. You can still benefit others and find things that make you smile. I hope, too, that you are able to find your faith again. It is a powerful thing, as long as it is based on truth. It may not take away our physical limitations but it can help us deal with them better. I truly hope that tomorrow is a little brighter for you and that soon you are able to find someone/something that is able to help. Don't give up!!

[chipper]

No matter how down you are, never forget that I care so very much. We are a family here. Love, Mary

[puppylove]

I care too. Don't give up. (((hugs)))

[HopeSprings]

I can't add much to the wonderful responses you have gotten. Just want to say you are not alone. I have thought those thoughts, felt those feelings so many times during this illness. Even though we are not physically there with you, we empathize with you, we feel your pain - we understand. I hope tomorrow is a little better. ((hugs))

[firewatcher]

Know that we are praying for you, and sending all the postitive energy toward you that we can!

(((((((((((((((Linda))))))))))))))))))))

[LindaJoy]

Thank you, everyone, for your words of wisdom, encouragement and compassion. You are such a great group of people. I appreciate all you're trying to do for me. I just can't stop crying. Really a very, very bad day.

Songcanary, I understand completely about not wanting to wake up tomorrow. That's pretty much where I'm at right now. It's been seven years of this. Honestly, I think I could handle all the lousy, horrible daily symptoms of not feeling well if I could JUST EAT!

Anyway, just wanted to say thank you, everyone, for caring so much. I feel so empty, though, that it's just not sinking in yet.

[Katybug]

LindaJoy,

I hope you are familiar with the Spoon Theory because I am sending a few of my spoons to you today. You have friends and people that care here and I am one of them too. Please, please keep holding on and just putting one foot in front of ther other. It will eventually get figured out.

I don't know here you live, but, there is a doc in MD named Dr. Ritchie Shoemaker. He has been on the show Mystery Diagnosis. He treats people with chronic Lyme as well as environmental toxicity issues and immune inflammatory issues. I wonder if he mght be able to help you. He is often included in information I see on te CFS scene. His ideas are interesting. http://www.chronicneurotoxins.com/ http://www.survivingmold.com/about/ritchie-shoemaker-m-d

Thinking of you,

Katie

[anaphylaxing]

I care and am rooting for you!!!

Are you on an H1/H2 blocker and mast cell stabilizer? Your poor system needs a break! Not that they use them routinely or they're good commonly but did you ever see improvement with Epi and steroids?

Have you tried an elimination diet?

Just ignore me if you're too tired. Just want you to feel better.

[tachyfor50years]

I have thought those thoughts too!

My heart goes out for you Linda.

Feel free to pm me if you want.

My prayers for you and all of us!

[Guest Alex]

Lindajoy,

I know it's just words on a screen, but we're here for you. I believe venting off here is better than seeing any therapist.

It's hard to stay positive when you can't seem to have a decent day, but please don't give up, don't lose hope.

I hope you'll be able to see the light at the end of the tunnel soon.

Stay strong.

Hugs,

Alex

[rach73]

Hi Lindajoy,

again I just wanted to add, I have been where you are right now. Ive also not wanted to wake up in the morning as there was no future and no hope. I eventually got through it with the help of reading the posts on this forum and from friends I had made all over the world on the internet.

Chronic illness *****, it drags you down and takes you places in your head you would have never dreamed possible. Sometimes it can also be a gift - you may think I am completely crazy, but I think if I had carried on working my husband and I would have eventually drifted apart, my relationship with my parents and sister have also improved because I can spend more time with them - usually just a text or a phone call but that is so much more than I was doing. It made me stop and think and see what was important. Im housebound, usually spend most of my days in bed, life is tough but every day I fight to make a difference to other peoples lives or my own.

I still have days / weeks where I could quite happily throw the towel in. I tell myself that these feelings are temporary and try to do things that make me laugh - watch a comedy video, sing (badly) along with my favourite CDs even if I dont feel like it. Before you know it your caught up in the moment rather than thinking about the future.

Your grandaughter is a gift to help you through this dark time. Keep focusing on her, each day just live a minute at a time if you have to. Things change, in time and your battle is ongoing. Dont give up. Know that there are many people here that want to help and support you.

Hugs xx

Rach

[issie]

Lindajoy,

Hope today is finding you better.

Reading Rach's post reminded me of a whole week - where I only got out of bed to go to the bathroom - wouldn't eat and didn't even raise my head up off my pillow. I'm usually the cheery one - the positive - cheer leader - you can do this type person. I had a friend come in to check on me and I didn't even lift my head up - I couldn't talk without crying and I just really wanted to permanently go to sleep. I don't usually let ----ANYONE -----see me that way. I put on a happy face and go on with the charred. But, sometimes, we just can't - sometimes, life and anxiety and the chronic-ness of it all just over take us. Realize, this happens to all of us. I pulled through it and I'll pull through it again. (I have no doubt it will happen again.) Just remember, you're not in this alone and all of us have been there and understand. We just need each other to help us get through these time periods.

Time is a great healer with our emotions and hopefully, we'll find that purple band-aid to give us more quality of life - very soon.

Thinking of you!

Issie

[hholmes13]

I'm so sorry that you're having such a horrible time. Don't feel bad venting! That's what these groups are here for. Sending positive thoughts your way!!

[LindaJoy]

Thank you again, everyone, for being so supportive. Honestly, I was a bit hesitant to post my feelings here. They're just too horrible right now. But, you've all made me feel okay that I'm feeling this way, and not alone in it as a lot of you have felt this way, too. I'm sorry that you have. It's miserable.

Katie, thank you for the lead on Dr. Shoemaker. I looked him up and then called his office. They're sending me a packet so I can look at what all he does and then, maybe, set up an appointment. I've cried less today, so that's a start, I guess.

Thank you for being here, you all.

Linda

[CC101]

Linda I am so sorry that you are going through such a hard time right now and I believe we can all relate to what you are going through. Never feel sorry for venting, it is healthy for the soul and is also what we are all here for; unconditional support. As I have stated in another post, something that helps me tremendously is writing anything and everything that I am feeling in a journal. I cannot explain why this helps, it just does, a lot. I have not been here long, so I would like to ask what diagnosis's have your doctors ruled out? What are all the symptoms you have when you eat? I am so sorry you have not been able to receive any relief, but please, never give up hope. I think Katie was on the right track when she gave you those links. I tried searching the internet for an article I read a long time ago where a lady had symptoms like yours and for several years was unable to get a diagnosis. I could not find the link, but like you, she was unable to eat anything and after years of searching and countless doctors, she finally discovered what she had was severe food allergies. I will keep on trying to find that site and if I find it I will PM you. - Like Issie, I have always been the optimistic cheerleader-like person and never let anyone see me in the bad state. Well, POTS knows how to break you down at times and in the beginning of my diagnosis, I felt so alone. No one around knew what I was going through even if I explained what POTS does to me til I was blue in the face could never make them understand. I remember being in the state you are and isolated myself and laid in the kitchen floor just balling my eyes out. We all have these tough times, but eventually, we are better and some days we are not. You just have to tell yourself that this is just a bad time and to not beat yourself up over it. This place is a great place to go to and we will always be here for you. Keep fighting and and make it a goal to find ways to make yourself happy. Think outside of the box, it is so important to come up with innovative ways that keep your mental health healthy. I will say a prayer for you tonight and I am sending many Hugs & also like Katie, sending some of my spoons your way! =)

[LindaJoy]

Thank you, everyone. Thank you, CC101. I'm sorry, I feel badly because you all are being so supportive, but I can't bring myself out of this funk. I'm down to sipping elemental formula again as I'm having severe reactions every time I eat, the clonidine patch not helping at all. And, last night's events didn't help any. Between my health and my lousy relationships, my life just plain stinks.

Long story short, I don't see my granddaughter very much, once a month or so. My daughter brought her by for about an hour last night. Since the baby is so young (21 months) and hadn't seen me for over a month, she didn't know me at all. It broke my heart. While there, my son-in-law asked if I was going over to my sister's house the next day for a big family garage sale, something we do each year together, of which I wasn't even told about. My whole family was gathering at my sister's house, and I wasn't even told about it,or given the opportunity to go. I already feel like a leper where my family is concerned because they all do stuff together all the time without me, because "Linda's sick...again." Did I ever tell you all that my mom was called to go to the hospital one time, the doctors thought I was going to die, and she said she and my brother couldn't make it because they were leaving for Disney World the next day? When I got upset about it, my whole family said they thought I was selfish and a ***** I called my daughter one time, who is a nurse, to be with me as the ER doctor was going to do a spinal tap and I was terrified. She said she was too busy baking a cake.

To top it all off, my son, whose girlfriend had a baby three weeks ago, called and told me they had been in town for a doctor check up (they moved two hours away, but they've yet to get a doctor for the baby in their city so they are using a pediatrician here until they can find one there) and he never even told me about it so I could meet them somewhere and see the baby. He acted like it was no big deal that I hadn't seen his son, my grandson! I think, "What is wrong with these two I raised?"

My son told me once, "Mom, you used to be hands on. Sometimes, too hands on. Now, you're not hands on at all." They don't get, I'm still here. I still think. I can still talk and play games and play movies. But, since I can't go out to eat, or go shopping, or go on vacations, or go to craft shows or ballgames, like they all like to do and do together, they pretty much ignore that I even exist. I wouldn't mind so much except that I have no friends left anymore, either, for the same reasons, so I pretty much have no one, except my husband who, like I said earlier, takes care of me but doesn't do it without letting me know how much of a burden I am to him and how unhappy he is, and how happy he used to be before he married me, etc.

I honestly have no incentive to get better, except what I find with myself. I don't know that I can find it myself. That's why I talk with all of you. You at least understand, and I don't hear, "Oh, Linda, you're too sensitive." Or, "Oh, Linda, you're so selfish." or "Oh, Linda, you just need to keep going, like the rest of us do," that my mom says to me all the time. I am sensitive, I'm not selfish, I'm sick, and I do keep going, it's just hard.

Take care, everyone.

Linda

[CC101]

Linda, your situation makes me feel so sad. I can relate to you because even though I am not treated like you, I am living in silence as I have no large family or no close friends that understand what I am going through. But I must say, I would rather suffer in silence than suffer from negligence and insensitivity from my loved ones. My heart goes out to you so much. You know what I would do? I would take what you have written here & print it out & give a copy to each of your family that you wish to be heard by. Or write a new long letter for each of them and pour your heart out with all emotions, feelings, and opinions. I think the way you are being treated is so insensitive and I wish to see some changes happen for you. Holding you in my heart & prayers. Biggg Hugs!