Wishing for a never ending rest.

I am in a bad way. Beyond bad. It is that time of month.

The time of month when I stare at the wall because I can't concentrate. The time of month when I want my shelf life to be up. I can't talk myself out of it. I want out.

Everything bothers me. Things I could tolerate, I now can't.

No one told me there would be perimenopause. No one said what that was. I can't find others with CFS who have dealt with or who deal with what I deal with when I am due.

I think of suicide. I have no energy, no desire. I am not scared. I am wasted. Things that I thought I was over...past hurts, roll in to hurt me again. I am not over anything. I feel nuts.

I came down with another infection. A cold/flu/mycoplasma. Who knows. I have been sick for 2 weeks with never ending snot and a few days of a fever and now it's in my chest. I go for an x-ray tomorrow. I have never been as sick as I have been this year. NEVER.

And now this. This menstrual cycle that brings me to my knees every month with no end because I cannot take hormones, I am allergic to all antidepressants and I feel like is this my life? Is this how it will be now that I am almost 40 and for the rest of my days, I will be devoid of a sex drive, devoid of the hope that I had because this new phase of my life has sucked it out of me?

Will I forever be hung up on an ex boyfriend because this cycle with its ebbs and flows brings him back into my mind again? And why? Because this illness isolates me so that I can't get out. I can't meet new people. I can't live. An emotionally abusive boyfriend...who if I was well, I would have dropped like a hot potato. But because I am sick and vulnerable and needy because I am so alone...ALL THE TIME...I am now nuts.

I have no family to call. I want someone to be here. To sit with me. I cannot call anyone. I am too messed up.

CFS has done this. I can't get it out of my head how my life has become this. And how it may never change and could get worse. And therapy. Why? When these hormones take over, I can't think straight to put things into perspective. Therapy would go in one ear and out the other.

I suffer. By myself. As usual. With no medicine to make it better because I don't respond to medicines. They make me more sick.

I will not call a suicide hotline. They will not understand and that is part of my depression. They will not understand. Most people don't or won't. I feel like a freak.

I am sorry for this. For writing this on a public forum. I am that despondent.

I will not end my life. I don't know how and I am too scared I would mess up.

I feel hopeless
.

Comments

I'm so sorry your hurting as bad as you are. i have been there so many times i can feel your pain as i read your Post.i too have been up and down the Hormone rollrcoaster, from perimenopause to full blown menopause at the swipe of a quacks scapel.

it was supposed to fix some of my Problems, it only made them worse.now i have to add hormones to the list of meds i take every day. the Mesh they Put in me to hold up a sagging bladder is working it's way out via my Bladder and umm OTHER places, the pain is excruciating to say the least.

I also can feel the loneliness you feel, although i have a Husband, he is an alcholic who dosen't really believe i am sick, and really dosent care. i can look him in the eyes & feel so lonely Honestly i'd rather be alone, it wouldnt hurt so much.People who are as selfish as they are do more harm than good.

I know you have Probably heard all of what im saying before, but i will say it again.YOU are here for a reason,YOU are unique, YOU have been given the gift of Imagination, you write Beautifully, your an Artist,

Your not alone, All of us here have been right where your at tonite.If not for this Forum and others i would go nuts. I too have wanted to leave this Place of Pain &torment, and have begged God to Take me. But i remain.

To get up and Maybe be in less pain, to see the flowers bloom, to feel the sun warm on my Skin. Just to Be, will have to be good enough for now. you have Nothing to feel sorry for, this forum is here for you.

Although im not so good at Putting down what i feel & don't say things too well, I just wanted you to know i understand... We all do. I will be saying My prayers tonite, and you will be in them. you are NOT i repeat NOT Nuts, you are Human.
Kat
 
Spitfire, I am so sorry you are suffering so much right now. I have said about three fourths of your blog to my husband on many occasions in the past. So don’t feel “nuts” or ashamed of being so ill. I would be willing to bet that most of us with this illness have gone thru such really bad times – for days, weeks, months, years, or decades.

But for most, there are eventually periods of blessed relief, even if they only last hours, days, weeks, or months. Lucky are those who have years of remission before relapsing again.

There are more men out there than you know who are capable of loving another person “for better or for worse”. You just have to learn how to recognize them. There is someone out there waiting for you. I would like to think I am capable of loving my husband as much as he loves me, but I think he is probably a better person than I am. Believe me, my illness has put him thru as much Hell as it has me – just a different kind of Hell. But I know he'll be here thru the bad and the worse.

I hope you feel better soon.

vdt
 
Thank you. I want to believe I will have some peace. There is a lot of emotional trauma through deaths and losses of loved ones and then this recent break up...actually not so recent..9 months. I put a lot on this relationship. I feel totally traumatized by it. I am going to get help from a therapist who specializes in abuse although with the illness intertwined, I am not sure if it will help. There are so many layers. The illness is driving the repetitive thinking and the hormones. Once the hormones come in, I am screwed. I just sit and cry in the dark. When I say I stare at the wall, I really mean it. I just stare at it. I can do it for hours. It happens only when I am due.

Kat, I am so sorry for your pain. I know too well pelvic and bladder and intestinal problems from having Endometetriosis and IC. It's awful. You are a strong woman. VDT, I am thankful that you have a loving husband. I wish for that, but feel I am too sick to find it. I can't get out right now and I am too broken emotionally over this last breakup to want to try again.

I really hope that I am not too broken..as in damaged goods. I feel that way.
 
Spitfire, can you take any herbs for the hormones? Maybe you could tolerate some of them?

Well, you know that I know how bad it is. All I can tell you is, it usually goes in phases. Sometimes it's so bad you wish you were dead and then other times you are better and can do alittle. There really isn't anything you can do when it's very bad, just ride it out.

There are many alternative things you can try. Chinese medicine is one of them or Ayurvedic Indian medicine. Maybe you can tolerate the herbs they use. It could help ease symptoms. It's all worth a try.
 
I m so sorry that you feel so bad. At least you know that its partly the hormones doing what they do. It sounds like you have so much going on emotionally and thats quite a combination. I wish that there was something I could say to help. Take care of yourself. It will pass
 
I have also been there, but since my endometrial ablation at Christmas time, I am astounded at the difference.
No period, no heavy bleeding, no terrible cramps & no PMT (which I always got about 4 days before the start of a period). For a month or two, I sort of thought I was getting hot flushes each day (but they were only once or twice a day & they've now gone 100%).

In fact, I was pretty much better by the end of the first month after the surgery. These newish laser procedures sure do beat going under the knife & hysterectomies.

Could I suggest a hot water bottle on your belly/pelvic area & rubbing 3-4 neat drops of Lavender oil on your belly. Also burning a few drops of Bergamot essential oil in a burner is uplifting.

Earl Grey tea has Bergamot in it - perhaps they might help.

And I swear by chamomile tea which I've been drinking for 25 years. I don't notice the chamomile tea effect so much until I STOP drinking it. Within about 8-9 days without chamomile tea, I get so irritable & agitated - that's when I notice how well it's worked in the past.

Try a a couple of drops of Bach Rescue Remedy on the top of your tongue at regular intervals throughout the day too.

You never know what might work for you - anything's better than drugs & anti-depressants.
 
Spitfire,

It's probably not any consolation to you right now, but I read in the big CFS book edited by Byron Hyde that single women have a better chance of recovering from this illness because there are fewer demands made on them. They can focus more on themselves and recovery.

It made me wish I was single. :D

And you are within that magic age where one stem cell treatment is a cure! I think we should all write to our local newspapers and tell them we need donations for stem cells treatments.

vdt
 
VDT...My Uncle has those letters as his initials.

Really..about being single? It's funny. I feel like we have been trained to feel that having someone in your life makes life better on the ill patient. But, having been in a relationship...I can also see why it would be easier when you don't have to consider the others feelings or needs.

STEM CELLS. That is one thing that gives me hope. It sounds like magic. I would love that.

Part of my depression also comes from all of the various treatments and what little help they do give and you have to be a doctor to understand the treatment. For example, Yasko. Could it be anymore complicated? I mean really. I look at some of these posts and the intellect that it takes to understand these treatments and think....forget it. My brain can't compute it and if I have to put so much work in to understanding the biochemistry of some of these treatments...I will get sicker. The stress of it.

Herbs have not helped the hormones although I have not tried them in awhile. I know of no really good TCM docs in my area. It's expensive too.

The next treatment I am trying is called a peptide shot for my allergies. I fit the sequence that's needed to get this $280 shot. It is supposed to give you back the amino acid that you are lacking in your body to deal with allergies. It's supposed to correct the immune system. It's a once a month shot. We shall see.

STEM CELLS.
 
The shot sounds interesting - something to hold out for!!
I don't think we get them in the UK, what sequence did you have to fit? Is it a new thing?
I do neutralization vaccines for food but they don't seem to help much for chemicals unfortunately, it would be wonderful to stabilize those reactions as I am sure we would be calmer.
 
http://www.autoimmunedr.com/testimonials.html

That I know of, there really isn't a lot of info out there about this. The test for it is in Germany. I had it done. It takes several months for an answer. They see if your blood fits a certain sequence. Mine did. Mine fits a certain sequence for 2 things; FOOD and HORMONES since I am allergic to my own hormones. I am working on the food first.
I have tried everything for food and it's gotten to the point where I am allergic to everything you can eat. Turkey, beef, chicken, pork, soy, all grains, carbs, many fruits. I can't walk around not eating and there are days where I don't want to eat due to the reactions.

I am trying this shot which has over a 70% chance of working but it takes several times to have it. At least 3 times. The good news is; not only does it help allergies but the immune system overall. If it works, I will be able to go off of most of my supplements. I am not absorbing them anyway due to the inflamed gut. I hope that helps. I am having this shot on Friday and will report how I feel.
 
Hey Spitfire

Don`t give up! I know, it`s hard enough having this disease without having to cope with the aftermath trauma of an abusive relationship. I am not saying that he sounds like a psychopath, but this site has helped me understand the effects of abuse :

http://saferelationshipsmagazine.com/

Unless a counsellor is very knowledgable they can make things worse. This organisation on the link is really good I think - they have helped me the most in understanding the harm. You don`t get over it with time - it just gets worse unless you have help.

Anyway, I hope that you can get the help you need. There is always hope. Giving up gluten has changed things for me.

best wishes

Brenda
 
Hello Spitfire,

My heart ached when I read your entry.....no one should feel this depressed and alone.!!! Plese know that you may feel alone , but you will nev er be 'cuz you have this nice group of people stand solidly behind you, for better and for worse, that is if you like, including me in your support group.

I had very bad PMS as well...not until I had surgery to remove 3 pretty nice size tumors I discocvvered that I had endometriosis. It took mw couple of years to finally healed from that...then in 2 yrs< i was dx with ME/CFS. So, I totaly symoathize with what youare going thry monthly.

Like many of us...we lose friendships/relationships. I never consider it is MY loss though. If one cannot be a 'friend in need', he/she wil eventually bid his/her farewell to you., if not now. It is natuaral to dwell on our ex-es when we feel down and out....
But it is much better for our emotional well being to call it quits, in a relationship that doesn't work. Makes sense?

I've been housebound, if not totaly bedbound for 17yrs now........I find it is getting easier by the day to hang on tight and not letting go my spirit. Thank goodness I have my artwrokt to sustain me.

Fingers crossed that Stem Cell shot worked for you. I would love to keep in touch, if you don't mind.

Tnder huggies,

Jazzie
 
Thank you. You are more than welcome to stay in touch. Most of my friends are CFS folks because they are the only ones who get it. I hope to come to a place of peace. I did get my period and I am not feeling SO crazed. More than anything I feel flat. Just flat. This hormonal deal is the worst ride of my life. I wish I could pop a pill to make it all better.

And yes, it is better to let go of a relationship that doesn't work and yet for some reason I have regret. Although, the thought of being with him gives me an upset stomach. So....

Thanks to all who have reached out. I am hanging in and trying to ride out the storm.
 
I'm sorry that you're feeling so bad! Your post brings to mind just how horrendous this disease can be because you are such a creative and dynamic blogger and I know it would take alot to bring you down.

There is a videochat available on Phoenix Rising where you can chat person to person live and I think Skype has the same thing. if you have a camera on your computer. http://www.aboutmecfs.org/Rsrcs/VideoChat.aspx

It would be nice if VBulletin had some dating/get together app that we could plug into the Forums - I don't think they do though.
 
I'm sorry for your hormonal blues and suffering. I am very sensitive to hormones and try to be careful to avoid foods with phytohormones (soy, for example). Green juices (parsley, spinach, romaine, dandelion, cucumber and fresh lemon) help alkalize and detoxify when the system is so toxic from PMS. Also maybe dandelion root or another herb that is good for the liver, which gets all clogged up during PMS. These are some thoughts.

Re: a relationship. Before I got into the one I'm in which I think has been four or five years now (and which has its ups and downs--of course), I was with someone who broke up with me because I didn't sleep in the same bed with him. He said something like, "Why should I have a girlfriend if I can't sleep in the same bed with her?" This sounds really mean but it was hugely important to him. Some deep need for a woman's presence was filled not just during the day, but being able to sleep and cuddle at night and wake up next to her. I simply couldn't do it, over the years with lyme/MCS and sound sensitivity and fitful sleep induced by lyme, his turning over in bed, and worse, his off and on snoring (I think he had sleep apnea) would have meant I got no sleep. I need to sleep alone, with my eye mask, buckwheat heating pad, my pillows just so, a sound machine in most cases where there is ambient noise etc. And even then I may wake up a few times during the night.

He got together with and married a woman who sounds very nice, a few years older than he, and who worshipped the ground he walked on etc, but also, slept in the same bed! We went to lunch a year or two later and he said, "Don't tell me you're sleeping in the same bed with your boyfriend now or I'll kill myself." Or some joke to that effect.

I realized at that point he had *really* meant what he said as the final straw for breakup. At the time I found it sort of hard to believe that could be such a big deal, so I thought maybe it was an excuse for other disatisfactions (and in truth, though in some ways we really enjoyed each other, we weren't really that well matched).

My current boyfriend doesn't mind that I want to sleep in my own bed by myself in peace and quiet. (Or when it's not a bed, camping mats. When we camped, I needed two separate tents). He likes to read and snack on foods before he goes to sleep. It doesn't seem much of an issue, we have other issues of course, but you see how needs vary from person to person.

I remember you writing about your boyfriend wanting a lot of sex. And it was painful for you. He went away accusing you, somehow, of not being the sexual person he thought you were.

I think that must be emotionally painful. But there are times and seasons in everybody's life. What seems so important at one time, can fade to trivial at another. Sex can seem like the most important thing on the planet, or it can seem kind of...incidental. It really depends on your age, your hormones, and what else is going on in your life.

There are all kinds of ways to love someone. Read the memoir of Jan Morris (formerly James Morris)

http://en.wikipedia.org/wiki/Jan_Morris

When she was a he, he married his true love. They didn't have much sex (though they had some kids, if I remember), because he wasn't really into it. Later he changed into a she, because he just had to (gender dysphoria). He then lived with his wife for a long time as a cousin or sister or something. Finally he married her again--I'm pretty sure. It was a really interesting memoir. Their love transcended those issues.

Such a love is rare, but who knows if it might be in store for you, as a surprise, around the corner. One thing you have to do is to give up your old self--to recognize your self now, with all the suffering, and look for someone who can tolerate and even appreciate *that*. If you try for the kind of guy that a healthy you would want, you won't get what you need, imo.

Sorry for the long post, stream of consciousness.
 
Jen,

Thank you. When I first started dating my ex, he said he usually only had sex once a week with his ex wife. There was no prompting for him to say this...we had sex constantly in the beginning. He came out and said it for whatever reason. When I tried to hold him to that after I couldn't keep up, he said at the end that he has a high sex drive. His sex drive was so high, he wanted it several times a day or night. I felt at times like an on call prostitute. If it wasn't in person...phone talk. When I was unwell and so sick. It didn't hit him at all that I was so sick...he wanted what he wanted. He used guilt, crying and any means to get what he wanted. When I would explain for the 100th time that I have IC, he would say, sex was not that important and that he loved me, not the sex. Then on the turn of a dime, he would say the sex was a need and if he saw me 3 times a week (3 times a week was never enough right from the start because he wanted to be glued to me) he expected it...every time he saw me. He could never sit with me and watch a movie. After the breakup he said in quotes, "You had a high sex drive in the beginning, I do too. I thought you were that person. I guess you couldn't keep up." It made me feel awful and worthless. Like I was less of a person.

Bottom line, that doesn't feel like love to me. Love is when someone wants to be with you and respects where you are at. Love is not guilting them into taking care of you CONSTANTLY.

I am horrified by things I did to keep the relationship, not because they were so bad, but because I was sick and he should have respected that and didn't. We had lots of sex. I don't ever remember having as much sex as he needed with any other man.

The pain does come in with exactly what you said..I was grieving because I couldn't be what I wanted and had once been. It was a double slap in the face. Not only was he punishing me, but I was punishing me. I hated myself. I can admit that and I still have self loathing. Plus, I couldn't sleep in the same bed too...just like you. I can't. My nervous system is on and he sleeps like 4 hours a night. He has horrible insomnia and OCD. Both of us were anxious. He was anxious because he needed you to sign on the dotted line that you were his and only his FOREVER. I was nervous because I am hormonally out of whack and sick and his anxiety fed mine. Plus, I can't say forever to a control freak.

You sleep just like me. I have all of those things too.

I hope I can find someone who can be ok with sleeping in a different bed. It has to be. It is what it is.

I need to try some of those things for my liver. I knew it was my liver because I had just had antibiotics, I had/have a yeast infection and my urine BURNED so bad and I had had plenty of greens. I felt as you say, 'toxic.'
 
Hi, Spitfire. That certainly is a lot of sex :). Usually over time that honeymoon intensity levels off...but anyway, since you say he slept little and was OCD, maybe sex grounded him and calmed him down, who knows. Maybe it was a form of self medicating. And if he was anxious about your commitment, maybe it was a way of possessing you and reassuring himself. IE he sounds a little driven and neurotic.

I don't see what the big deal is about sleeping by myself in a bed, but I'm a bit of a loner anyway...I need some time ALL to myself. I need that in waking hours, too.

Oddly enough, after posting this about my former boyfriend, I was forwarded today, an email he sent to his closest friends. One of them who I got to know a bit, forwarded it to me. My former boyfriend and his wife are in France for the summer. He wrote a long email to his closest friends all about it. He sounds very happy, though the trip has its issues, apparently. He sounds happier than he may have been in decades. Maybe I'm just imagining it, but it's almost like after years of suffering he found a relationship he's really enjoying and someone who is good for him in some fundamental way that he always needed and never found.

So, it can happen...but it might not...it really is the luck of the draw. Then again, chance favors the prepared.
 
SPITFIRE: JUST SENT YOU A PRIVATE MESSAGE. I WENT THROUGH WHAT YOU ARE GOING THROUGH AND IT DOES NOT HAVE TO BE THIS WAY. THERE ARE MEDS THAT WILL STOP THIS COLDD (ZOLOFT) AND WORK ON THE HORMONAL ISSUES FAST. You MUST tell people what you are going through and not just put it on a board where we can not be there physically to help. Please tell people around you how badly you feel and that you need help NOW. You have forgotten how it feels to be happy, even with CFIDS. But getting on the righ meds will help you to remember the good parts of life that even we CFIDS people do have.
Please read my message to you and contact me via the email address.
Please tell people around you how you are feeling. You do NOT have to feel this way. It really can be fixed and you really can feel better. I too went through hell and it all seemed quite logical and that is the most dangerous part of all of this. TELL PEOPLE AROUND YOU THAT YOU ARE IN TROUBLE.
 
How odd. My internist said that it seemed I too was allergic to my own hormones. Again, get to a smart doctor, tell him/her what is going on and get on the right meds. I hated to do the anti-depressants BUT the Zoloft saved my life and worked within three hours since I was so low in the serotonin area. It did take a good month before I was back to "ME", but the Zoloft stopped the sobbing, depression, suicidal thoughts, and that horrid screaming in the brain to get rid of yourself.
You may already be in menopause and don't know it. You can drop from a norm for your age to a hormone range of nothing very quickly and that's when you get into big trouble. That's what happened to me.
 

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