Major lupus meltdown. Don't know how I can go on

General
1

I'm good at giving advice, and not using it myself. I fight to remain positive. I want my independence, and crave the old me back. I am writing a lot before I go into any details so no one will be able to hit the front page and read this. Not having a pity party, but a meltdown anyone without or with lupus plus umpteen other health things to deal with would have under the circumstances.

I am letting myself and everyone who needs to be able to count on me down. Fact.

The world is falling apart around me, and instead of being able to constructively help, I'm getting worse by the day. Yes, I'm beating the snot out of myself over this. You would think I'd be all cried out by now.

A son who we thought was serious about changing his choices and attitude has not - he was here today, angry, disrespectful, acting like the poster child for prison any day now, and I had to make him leave. He needs a dual diagnosis admission, (brain chemistry issues and addiction) and it takes a court order to get it, Try getting that with a twenty five year old who says he is fine despite numerous occasions of being a danger to himself and others, including a serious legal conviction. You can't help someone who won't help themselves. I keep saying it over and over. 2 other children in crisis, different reasons, and have been told by everyone I'm not there for them. My jaw is still on the floor.

Yet, I was "that mom" who walked away from a career to be a full time stay at home mom. I chose to. Do not regret a second of it. Always dependable, positive loving home environment despite many challenges, and yet I get blamed for all their poor choices as adults? You don't stop loving and being a mother because you become ill, or they turn 18, and their poor adult choices are not your fault, but the world looks at it differently. Everyone is sitting in judgement instead of seeing reality.

My old as dirt beloved furbabies were helped to say goodbye a week ago. Their housemate was grieving herself to death, so I made another rescue. He's a love. So an adolescent beagle mix to now train.

My husband and I love each other and I feel so guilty my health issues stand in the way of contributing financially to our household, and his wanting to travel. He has stuck by me through thick and thin for 18 years. Doesn't he deserve more?

Bottom line is the stress, of this and more, makes me want to hide under the covers, curled up, and never come out. Each day brings more physical pain, symptoms, hurdles to jump over. I'm at my breaking point.

This isn't living, it's barely surviving. I no longer know how to stop this insanity I'm wrapped up in the middle of. It feels like no matter how hard I try, it keeps getting worse. The lupus, especially my heart, kidneys, nervous system, and add in spinal issues (12 known bad discs, putting off surgery, won't do well right now), are progressing very quickly. I feel so helpless and inadequate. These ungodly diseases, WHEN they can name them, are ... just too much to bear.

I'm sorry. I know I should hit delete. But I'm hoping someone else might have come through times like these, and can help me regain hope, which is fading fast. This took hours to write and correct. If it is too long or makes no sense ignore and forget it.

Thanks if you read along. I'm not good at asking for help, but I really need it right now. Overwhelmed and fighting a losing battle so it seems. My latest flare was settling down, but coming back with a vengeance.

Perplexed

2

You need to get into a counseling program to help with coping with all these stressors. We all have trials and burdens in our life including health issues and must develop our own mechanisms for dealing with them. It is important to learn to be able to take care of your own needs- both mental and physical I hope that you will be able find some peace in the coming days

3

Dear Perplexed,
I absolutely understand. My daughter has Borderline Personality Disorder. A year and a half again she became addicted to heroin and prescription pills. She moved in with the addict boyfriend whose parents buried their heads as to what was going on. Brought her to rehab where she was kicked out for her psych issues, sent to another rehad 3 states away where she signed herself out. She moved home and then stole all of my jewelry. I had her arrested thinking that is the only way to save her life. She wandered homeless for a week until I was able to have her hospitalized against her will for her psych issues. She’s been going to outpatient since May. She disappeared on Friday and hasn’t been home since. I don’t think she’s using but is wrapped up in a new boy who she met at her meetings. My son has his own issues and needs to get his life together also. I’m beyond frustrated with him also. I’m trying to keep my youngest daughter sane and normal throughout this also. Oh and then there’s the pesky little issues of my health. I’m in need of a double fusion and refuse to have it right now too. I already had one double level surgery and I’m still in pain. I understand when you say you feel judged. I’ve lost soo many friends in the last few years. I had a best friend since kindergarten…the closest thing I had to a sister, and couldn’t understand why I couldn’t fly off to Vegas for her wedding. Or friends that because of my daughter and her mental health/addiction issues has completely ruined my relationships with them.ive fought with my parents when they insinuate that my husband and I have not done something right or they just feel sorry for her or my favorite when they tell me they “understand”. NO ONE “understands” unless they too have walked through the fire. Perplexed…I UNDERSTAND!!! I get what you’re going through. It’s the worst feeling in the world to feel so helpless when someone you love is destroying themselves, fearing for their life and safety and dreading the phone call that something bad has happened. Everyone would say she needs to “hit rock bottom”. Her bottom kept getting lower and lower. I was completely judged, even by my own husband, for having her arrested. However, between that and then being hospitalized was her wake up call. She had nowhere left to turn.
I wish that I had answers for you…I truly do because I know how lost you feel right now. I won’t pacify you with all the “it will get better, this too shall pass, hang in there, lead a horse to water etc”… But I will tell you I’m here for you, I understand, and support whatever decisions you need to make to save your sons life. I wish for you tremendous support from those around you and peace.

4

I cry with all you and I understand. Addiction and mental illness are no strangers in my life either. A counselor told me once the best thing I can do for my children - is to take care of their mother first. If you have ever been on a plane traveling over water - the flight attendants tell parents to secure their oxygen mask first, then the child. A parent without one struggling to take care of a hysterical child - both will surely fail. Put your oxygen mask on first, and I'll do the same today.

5

Hi Perplexed. I sat and read your post and got stuck on the line your wrote about your husband. I have been married for 11 years now. Let me tell you its days where I come out and tell my husband that he deserves better. I question him of why does he want to be with someone like me. He always tell me because he loves me. Your husband loves you too. My advice to you is to continue to let him do that. Some men can't handle this and is ready to throw in the towel. WE have good men who is willing to stand by us. We need that positive support in order for us to fight. It's okay to feel down sometimes. I do. Today I'm achy all over. I wanted to cry but then I just told myself this too shall past. My kidneys are affected by the lupus. I know you feel like why even fight. But you have reasons to. As far as your son, just posting about him I can see that you care about him. So no please don't blame yourself for his actions. I know for a fact that it's hard so I'm not going to tell you not to curl up under the pillow. While you are there count your blessings. I agree with the other posts who also recommend counseling. Good luck!

6

I hope things turn around for you. Lupus is SO UGLY! You have the right to be upset and mad! I have been reading your post and can relate to many of the things you are saying. I am lucky I found this site. It helps to get these feelings out when they are pinned up. There for a while, I started to think I was the only 1 who had these feelings of anger and having a hard time accepting them.

I know I myself have only been dealing with this for a year and there have been many times I have just wanted to lay down and quit fighting. My husband just had to remind me the other night as I lay crying in the bathroom to never give up fighting. Lupus is by far 1 of the hardest thing I have had to deal with. It sounds as if you are like myself, struggling with that godly feeling of inadequacy when it comes to your household. I also find I feel this way often. My husband and I have done everything in the yard together for 16 years. Now, I can barely mow on a riding mower and keep a few flower beds cleaned of weeds.

I want to personally say Thank you for not hitting the delete button!! You have helped me to realize other Auto-Immune Fighters feel this way at times too. Please feel free to chat anytime. Everyone needs a place to share. I have been closed off about these symptoms and feelings for so long.

I hope you make it through this flare ok.

I

7

Hello there,

First, I just want to say, I am so sorry you're feeling helpless and out of control. I understand how you feel, although I do not have kids of my own yet. Addiction is no stranger to my family either. I have a brother, who I love and care about very much, who has been an addict since he was 13 (he is now 21). He has been to rehab twice, and the most recent trip he left early because he didn't feel he needed it. It's caused my family tremendous amounts of stress and sadness. My poor mother has come to a point where she just has to let him live his own life, because fighting with him and trying to change him will do no one any good. Stress makes your Lupus worse, which I'm sure you're very aware of. Right now, it's life and death for YOU also. I agree you should seek out counseling among other things that can help to reduce your stress levels! There are absolutely no shame in getting help, especially when it's so detrimental to your health. Please fight for yourself as much as you would for your children. Just know in these hard times, there is always someone willing to listen..whether it's on this website or somewhere else. You're never alone with your problems. As for as just your Lupus is concerned, I understand what it's like to feel as though your world is falling apart around you. Your life seems more limited, and suddenly my spouse has more responsibility than before. If we're being honest, at times he feels more like a care taker than my husband and I feel so sorry for that. All I can recommend, is try to find at least 3 good things about your day that you can concentrate on rather than all the bad. I hope this helps if in no one way, but at least to know you're not alone. Thank you for pouring yourself out today.

Sincerely,

Brittani

8

I second the opinion that the most important thing that you can do right now is to focus on your own health and mental/emotional state. Although I haven't had to deal with children with these types of issues, I know all too well the feeling of everything falling down around you. Back when I was diagnosed- and experiencing my worst symptoms, my marriage was disintegrating. He was stalking and harassing me ( I think he has bi-polar disorder) and even attempted to kidnap my child. I had a high powered job that was adding tremendous pressure and a sister who was getting married- and I was expected to plan everything, be the family chauffeur, counselor, etc.

The point is that I was falling apart and it wasn't until I took a selfish (some thought) stand to put myself first that things turned around. People unfortunately will go through their stages with or without you and while it may tear you up inside- allowing yourself to be drug into the drama then incapacitates two people. The best thing you can do is to ensure that you are strong as possible, so when they come around, you have the emotional and physical capacity to aid them when it will make a difference.

Sending you lots of love and strength

xx

9

Hi!!!!!!SLOW DOWN, Breath, STEP BACK , REST , REMOVE YOURSELF , if you don't, a FLARE will hit you so hard , there will be nothing for you to but sleep !!! Am saying this to you because i have been at the same point where you are.!!! smile it is okay to want to be the person you use to be , but that is NOT going to HAPPEN !!! please dont take this personally but if you, over load yourself you will nothing be for NOONE!!!! think something like this, Why can't they solve some of the less demands on their own??? Hay !!!! it works - am not telling you how to handle your family (kids ) but at some point you have to know when and when not to do anything !!! Yeah -we as mothers want to fixxxx everything for our little kittens(children), that's what i call my kids!!!smile anyways just look sometimes and see if they really need the help or it is just you who want to give the help!? Alot of times they wont even go back to the situation that they want you to fix - because they really didn't want it fixed just want to make us(mothers ) go insane, because that is what we do.LOL So just relax they( maybe), they are big enough to relate to what is what on their own, YES just wait, and look close....YOU take care of youself, and don't get crazie....Beverly L.

It will be okay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

10

Wow, when it rains, it pours, I'm so sorry for all that you're going through. I know it is overwhelming at the moment. I have certainly been where you are, and sometimes dreaded that I kept waking up the next morning. Speaking from being on the other side of the stress tornado, it does get better. ((hugs)) I think is when many of us seek out a higher power. If your tendency is toward Christianity, there are so many comforting verses in the Bible. I know that during my world falling apart, I didn't want to hear all the platitudes, like "don't worry" or "this too shall pass", because I needed to know how to survive UNTIL it passed. It's a matter of taking life one hour at a time. Saying I CAN bear this for 1 more hour, that's it." Then you do it again. There are online counselors who can also help you through being in the house of a possible criminal, and hopefully you can find one who knows how illness affects every aspect of life. I have a counselor friend if you want to message me. I am truly sorry for your circumstances. You have every right to rant and rave and fall apart. It's healthy and helps you recover.

Best wishes, Sheila

11

Ann I am SO sorry to hear this! I will pray that you can find other housing if you can't keep your house. Have you checked out all the new gov't plans Obama implemented so people won't lose their homes?

Blessings, Sheila

Ann A. said:

I have recently experienced a significant loss of income. I will probably lose my house. The stress produced by the loss of income and the future loss of my house has led me into some very distorted thinking. For exampe, my though processes I have gone from "Ann A is going to lose her house" straight to "Ann A is going to be homeless." or "Ann A. is going to lose her house" stright to "Ann A. is worthless."

12

I am a single mom & can totally, completely relate to what you're saying. Last year I ended up in whirlwind like you & refuse to go back into one again. During my whirlwind, my health declined to the point that I needed to have major heart surgery. After finding out that I needed surgery, I got laid off. While I was in the hospital I died 4 times. When I was finally able to come home to finish recuperating, my youngest daughter decided with her boyfriend it was time for her to move out. Shortly after that my nephew that was like a son to me died. After going into what one friend told me was a downward spiral with no return, I sought out counseling. The counseling meant everything to me & helped a great deal. These days I thank God that I open my eyes every morning & put my feet on the floor. I have to be my own savior first before being one for anyone else. Hang in there! You will get through this. I highly suggest that you do seek out counseling. Good luck & let us know how you are doing.

13

thinking of you from Aust. Kaz xox

Ann A. said:

I strongly believe in seeking professional help. While you search for an appropriate professional in your area there are some things that you can start to practice on your own.

Stress Management: How to Reduce, Manage, and Cope with Stress

http://www.helpguide.org/mental/stress_management_relief_coping.htm

http://www.webmd.com/balance/stress-management/stress-management-re...

I have recently experienced a significant loss of income. I will probably lose my house. The stress produced by the loss of income and the future loss of my house has led me into some very distorted thinking. For exampe, my though processes I have gone from "Ann A is going to lose her house" straight to "Ann A is going to be homeless." or "Ann A. is going to lose her house" stright to "Ann A. is worthless."

I have received enough help and training over the years to recognize the form of distorted thinking known as catastrophizing. It is a very common but not very beneficial response to stressful life events.

http://psychcentral.com/lib/what-is-catastrophizing/0001276

People with chronic illnesses, chronic pain, etc. often catastrophize.

http://psychcentral.com/lib/15-common-cognitive-distortions/0002153

One of the most important things for people with lupus is to understand that we tend "to go on" even if we do not know how we are doing it. People who are dx with lupus tend to have normal life spans. The less effectively we deal with stress the more miserable we are while we go on.

http://www.hss.edu/conditions_managing-lupus-stress-more-effectivel...

I wish you the best of luck and learning to cope more effectively with stress.

14

Everyone is here for you and some have been through a lot of the same type of issues. I have. I don't know how I came through some of it but I did. Since you and your husband are close you can keep leaning on him and encourage him to lean on you with the worry part. Sharing that part of it with someone helps a lot. Hopefully counseling will help too if you go that route. I will keep you in my thoughts and prayers. I survived and so have others and that equals hope!

15

I understand Ann. We lost our house and moved to our home state because it is cheaper. Thankfully, we also have lots of family and friends here and we left one son and his family but they are only 4 hours away. We tried everything including Obamas so called help. The bank we had just was outed by a bunch of whistle blowers who have now lost their jobs and the entire fiasco has been buried my the main stream news sources. What they did was purposely set people up to fail and I don't understand it but it happened to us and we tried to fight what they did but lost. I doubt if they will ever have to pay for what they did. They are huge. B of A. We will struggle from now on but we are together in this and we are happy. You are I my thoughts and prayers.

Ann A. said:

I strongly believe in seeking professional help. While you search for an appropriate professional in your area there are some things that you can start to practice on your own.

Stress Management: How to Reduce, Manage, and Cope with Stress

http://www.helpguide.org/mental/stress_management_relief_coping.htm

http://www.webmd.com/balance/stress-management/stress-management-re...

I have recently experienced a significant loss of income. I will probably lose my house. The stress produced by the loss of income and the future loss of my house has led me into some very distorted thinking. For exampe, my though processes I have gone from "Ann A is going to lose her house" straight to "Ann A is going to be homeless." or "Ann A. is going to lose her house" stright to "Ann A. is worthless."

I have received enough help and training over the years to recognize the form of distorted thinking known as catastrophizing. It is a very common but not very beneficial response to stressful life events.

http://psychcentral.com/lib/what-is-catastrophizing/0001276

People with chronic illnesses, chronic pain, etc. often catastrophize.

http://psychcentral.com/lib/15-common-cognitive-distortions/0002153

One of the most important things for people with lupus is to understand that we tend "to go on" even if we do not know how we are doing it. People who are dx with lupus tend to have normal life spans. The less effectively we deal with stress the more miserable we are while we go on.

http://www.hss.edu/conditions_managing-lupus-stress-more-effectivel...

I wish you the best of luck and learning to cope more effectively with stress.

16

Thanks to all of you for caring support, links to info, offers to talk, and sharing your own coming through similar circumstance. I am very grateful, and know I'm not alone. Yes will take care of myself first, and unfortunately that partly means strong self defense. My son is very unstable, already has an assault warrant outstanding for when he had at me 2 years ago, on top of a CDV conviction. He just moved back here, staying with someone two blocks away, and is going actively after my youngest son who stopped him from nearly killing his last girlfriend. Not exaggerating. We are down to earth hard working people. Good neighbors. Have done charity work. Keep our noses clean, and live from a place of love. My son? I would have never dreamed this possible. I refuse to enable him, so that makes me the enemy. I have to keep my phone in a pocket to call 911 if needed. jail isn't going to help him, but professional help can't be forced on anyone either.

I love deeply, and have to love myself as much as others. They have no clue how challenged I am health wise. I know how to reduce the stress and anxiety, but have been so immobilized have not been doing it. I promise you all and myself it starts back right now. No one ever promised us life would be easy, it's up to each of us to make the best of each moment. For now, moment to moment is all I can manage.

Anne A - I'm so sad you have to face losing your home. So wrong, but you sound like you have a handle on things. I hope it all works out for the best for you.

This is all I can type right now through the tears.

hugs and love and thanks to everyone.

17

Your life sounds like a nightmare, the stress is probably contributing to your flares. I was diagnosed with Lupus when my son was 3 after a high risk pregnancy, a stressful job working in NICU as an RN it was all too much. My health came crashing down. I was forced to quit my job which contributed to a large amount of our family income. My husband has not been understanding & it's been difficult trying to keep the disease under control & deal with his nasty attitude. Flash forward 25 yrs later, my son has graduated from college. He is working at a job he likes & has a girlfriend. My husband is still not understanding of my limitations & flare ups but I've learned to ignore him & keep my focus on limiting my stress inspite of him. I find comfort in the fact that God loves me & is always available to hear my distress. Things have gotten better you have to be patient, this disease does not do well in stressful environments so try to relieve it my letting your grown children be responsible for themselves & don't worry about what people think, most likely their too busy with their own mess.

18

Hugs and strength being sent your way. I have been a part of very similar situation. Best thing for you. Be selfish. We know how to take care of ourselves. It is our ability to justify not doing so that causes the stress. When you are taken care of and have strength, rest and lower pain levels you are able think much clearer and help the people around you more. I have had RA since I was 7. The first thing I learned is you have to tell the world to stop and wait until you can deal with it. There is nothing wrong with that.
Take the time you need for you.

Hope all turns around for you

19

So sorry you are going through all of this. I’ve walked in your shoes. It’s a tough spot to be in and the only thing that has kept me sane and from giving up is prayer. Anytime. When I’m driving, when I’m showering, when I’m doing the dishes, when I’m cooking. There were many times I also just didn’t feel like I could take anymore drama in my life (I abhor drama), but when you have a family it’s hard to avoid when they bring it into your home, into your life. Unfortunately MOM is usually the one that gets the blame for everything, especially when our kids make bad choices. I too was judged harshly for my son being bipolar and for the mistakes he’s made. Hang in there. I’ll be praying for you. I also wanted to mention that since being on fluoxetine I have a better handle on how I react to things which I have no control over.

20

Yes!, prayer goes a long way. My grandmom (my father mom) , is always saying, Just pray, anytime, and all the time through the day! And you know something , it works, even if it is not at that moment. But hope that you are going to be okay, my prayers go out for you…Beverly L.