posted
I think I'm more suicidal than I have ever been. As I posted before, I was making progress when, in December, I fell down so far I did not think there was any chance I would make it out alive. I did -- barely -- but I am much more disabled now.
I already had zero quality of life. I was well enough to see a human being once every two weeks, not well enough to interact with the personal care attendants that would do chores for me, unable to talk on the phone, barely able to do much of anything for myself, completely incapacitated, too ill to move anywhere, trapped.
Then, for six months I became so ill I could barely move an arm or leg, lost the ability to breathe and began using a ventilator, became so hypersensitive to sound and vibrations every tiny noise was neurological hell, was unable to watch TV or listen to phone messages, was one hundred percent unable to leave my bedroom, and was fighting for my life every minute.
I begged my family for help but they callously abandoned me and left me to die a horrible death alone. My friends who are all far away put together a caregiving system that didn't last -- PCAs quit right and left, I lost at least 7 in 7 months, and I lived in continuous terror of how I was going to get food to stay alive. I could not bathe or take care of myself until recently.
I'm slightly better now, but it's clear that the tiny bit of life I had left a year ago is completely gone. I can handle some of it, as I can watch TV again which is something, but the violence of my family abandoning me with such cruelty, and really the violence of a social system that provides inadequate support for someone in my situation (I have MCS, so there are no nursing homes I can go to either) has done me in.
It doesn't seem right now like I'll ever be well enough to see my friends again. The rage I feel toward my family for doing this to me, for denying me care when it might have saved what little life I had left, is beyond description. My father funded the ventilator for a month and then sent me an email saying he would not be able to pay for it any more. It hasn't just been continuous terror, being raked over the coals of death, but hatred and cruelty I never wanted to witness in this lifetime.
I feel very matter of factly at this point like I want to die. I don't want to talk to someone because I still can't talk as I'm too short of breath. I just feel like it's the only compassionate solution to a situation that keeps getting worse. I would rather do it now before I go down again to the point that I die of asphixiation as I almost did a few months ago when I lost the ability to breathe.
I just never thought I would be dying alone a horrible death. I was popular my whole life, always had a lot of friends, but the illness has stolen everything I had. I really can almost -- almost -- endure the loss, but not the utter heartlessness of my family.
I don't know what I'm looking for here. I guess prayers would be nice. I just feel like it is my time anyway and I wish God would just take me and take me peacefully so I could stop suffering so much. I don't see any point to it any more.
I have experienced so many levels of unendurable suffering for 17 years, but what I have gone through this past year is beyond compare -- and I have been so alone through it.
i'm so sorry you are feeling suicidal; have you read the post at the TOP OF SUPPORT?
so sorry, but i can't read long paragraphs like yours at all so will have to scroll on by; but wanted to reach out and give you a friend's hug and kiss.
if you click on pencil, 3rd icon to right of your name and break up your post into 2-3 sentences MAX and DOUBLE SPACE between each paragraph; do this for your entire post ok.
then we'll be able to read it and advise you more .... big thanks!
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It breaks my heart to hear what you have been through. I can only imagine. When I was really sick I came very close to taking my own life. I had the same sensitivities that you do. Sound, vibrations, chemicals, etc. It was not as bad as yours sounds but, still very hard to live with.
At the time my family didn't understand and I felt very alone. They didn't desert me but, they offered me no help when I asked. That is probably the thing that hurt the most. You always expect your family to help when you need them too but, then they don't when you need them the most.
I now know that my family did this because they just didn't understand and because they didn't understand, they thought by ignoring my cries for help and not "feeding into my illness" it would help me to snap out of it.
It has taken me years to get to the point where I understand why they felt this way. Lyme has thought me to be a very understanding person to deal with the crap that comes with this illness.
I am grateful that I didn't end it all that day. Shortly after I began to get better and alot of my symptoms improved including the sensitivities. I still deal with some of them but, they are liveable now.
If I had taken my life I would not have had the chance see my improvement. You owe it to yourself to keep hanging in there. I know your in a very though place, you have worked so hard, please don't give up. I will pray for you tonight.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
LymeCFIDSMCS,
It is hard, hard, hard, and you have multiple syndromes and an unsupportive family to boot. I am not going to sit here and tell you to keep up the fight or that this minimal life is worth living or that you should try to seek pleasure in the simple things that you are still able to enjoy....like 'watch a funny movie"/
I have been where you are at. And the bottom line is that we don't want to die, we want to live. That is why we are still fighting. What you are really feeling is loss, it is hard to take.....just existing.
I also understand your aloneness and fear of dying alone, I too have felt this way. Terrified actually. I am amazed at how some here can plod on and on and keep their spirit intact.
If I could, I would be your family. I wish that things were better. You did pull through once.....maybe next time you will regain a bit more.
Hang on to the hope. I can only commiserate and that is not at all supportive, I know.
Posts: 3975 | From usa | Registered: Aug 2007
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I'm sorry you are going through this...and feel so alone... I know that you may feel you are just typing words in to a computer but we are real people here on the other end...reading your post and are here for you....
we care...I care....
hang in there.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I'm sorry and I know there's no words that can help right now. You are in my prayers. I'm so sick of this disease and what is doing to us.
posted
So sorry for your troubles, all I can do is send best wishes and healing thoughts.
Posts: 234 | From BC Canada | Registered: Aug 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I care about you and don't want you to die even though we've never met.
The bond we have is a common illness and this website.
For me this website has been about the only support I've had.
Like you, I lived alone throughout my treatment with little to no support from anyone.
Lost 10 pounds in one month once because I couldn't get out of bed or function enough to go to the store.
The realization of our loved ones not caring for us is devastating.
I can remember crying and asking my father if I could stay over at their house for a few days because I was having trouble breathing too.
3 days was all I got.
I try the best I can to cope without family support.
I've learned the hard way, even to this day, that I have to live my own life basically without a family.
I see them rarely. My brother and his family I see once a week because I go there. If not, I wouldn't see them either.
They have never visited me since my illness began in 2003.
I don't know where you're at in your treatment. The first year and a half were absolute hell for me.
I am better. Think it took about 3 years. I haven't seen an LLMD for about 2 years now and am trying to treat ongoing symptoms with alternative stuff since I'm out of money.
Let's see, I had lyme, myco, ebv, herpes and bart.
Glad you posted. Know where you're at, been there, done that.
You're not alone.
I love you!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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posted
Thank you so much, everyone, for the kind and caring words. It helps to be taken out of my own head and be reminded that these are struggles so many of us share. I don't know what I would do without the support of these new friends, even if we may never meet in person.
I am sorry that others have felt so alone too -- I guess a lot of us know what it is to be a lone wolf, to borrow Alaska Lone Wolf's moniker : )
Much love back to all of you, thank you for helping me get through the day.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Feelfit said what I think too! I wish I could be your family!!!!
I think piegirl has something there about your family. They think you will just pull up your bootstraps and carry on one day.
I think they just flat out don't understand!
We care and we all wish we could help in a big way. Is there anything else we can do ??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
People don't know what to do, so they do nothing.
They don't want to have to take care of a sick, whiny hypochondriac.
What you describe is what I fear will happen to me eventually.
I'm so sorry that you're having such a rough time. I'm so sorry for all of us.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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bettyg
Unregistered
posted
mcs.
thank you so much for editing your words to small paragraphs so i/many others can read them.
you have been thru so much .... just so heartbreking to read this.
desertion of family, boy do we all know that one well! my 4 siblings didn't give me any including my only sister who was dying of breast cancer. she informed my husband sometime before her death, "the family thinks it's all in her HEAD"!
she was in so much pain, but couldn't recoginize my own; that was disappointing since she/i were SO VERY CLOSE.
my 3 siblings have never even talked to me about my 39.5 yrs. of lyme.
memorial day, my youngest brother did ask me how my health was!!! i had to do a double take to make sure i was hearing right!
WE CARE ABOUT YOU & LOVE YOU AS OUR ON-LINE FRIEND; we'll be your family with UNCONDITIONAL LOVE!! we are NOT fair-weather friends .
hang in there; we'll help support in any way we can.
are you involved in church where they might pitch into help you?
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posted
Even though we've never met and live so far apart, I really care about you.
I care what happens to you and what you're going through.
I care about how you feel and what you think.
You are definitely not alone.
Your family isn't there for you - let us be.
Please don't give up - we're all thinking of you.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
We are all your family....your lyme family, who understand your feelings.
Have you talked to your LLMD lately regarding your decline and your deep depression?
Is there anything more he can try for you right now?
Do you have a lyme literate psychiatrist who can help you?
Please come back often and let us know how you are doing.
I will pray for you....that you find the strength you need to get through each day....that your health will improve so you can enjoy life again....that your family will gain an understanding of your suffering and be supportive....and that your depression will lift so that you can cope much better.
Families come in all shapes and sizes....and you have a big one here.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I can't tell you all how much I appreciate every word you guys wrote me here. I feel lucky to be part of the family here.
It makes me sad to hear so many stories of families abandoning others, and of people going through this alone, but it definitely helps give me perspective on how universal some of these experiences are.
Thank you everyone.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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bettyg
Unregistered
posted
mcs, yes, many here are walking in YOUR shoes with identical situations; and that is what HELPS US THE MOST.
we are NOT ALONE; we have others sharing same feelings, thoughts, and loneliness of being abandoned.
so glad our notes perked you up; that is what they were meant to do, but most of all, they were WRITTEN FROM THE HEART!!
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posted
Hi MCS , So sorry to here of the way you are feeling ,it 's such a shame that so many of us have had to deal with the same thing. Suffering from the physical symptoms of these diseases is hard enough , but the lack of understanding from our loved ones is truly devastating !
I personally fight fealings of depression all day everyday ,and for me it is the hardest part of this whole illness.How people we need and love can turn and walk away , I just can't understand , but you can count on the wonderfull people here to stick it out with you !
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Thank you, you wonderful people. I am so grateful for all of you and how you keep fighting both for yourselves and for relative strangers.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hang in there.....lots of hugs and healing thoughts being sent your way....(((hug))))
Posts: 4590 | From Midwest | Registered: Jun 2008
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