I need a friend

General
1

I'm sorry everyone, but I guess it's my turn. How do we get through this? I am feel like i'm at the end of my rope. I am emotionally in a bad place right now. My family hurts me with words so bad, and am left to feel like this is all my fault we are sinking (financially). More days than not, I feel like running or putting a bullet to myself to end everyone's misery. I have fought almost 3 yrs to get my disability, sold our home, moved to another state, and sinking more. This has torn me apart like nothing I've ever felt. I have always had health issues since I was young, diagnosed with SLE in April. Tremors in head started when I was 30, then pain, then the dx Fibromyalgia, then Cervical fusion in 09. Rhuemy sent me to a Nuerosurgeon yesterday, he was very silent as he told me nothing would help. He said I am very rare individual. I am too young to have that much mess in my neck and that because of the Fibro and Lupus, surgery would only help me temporarily and I would need it at EVERY level C1-C7. I feel so defeated...my family could care less. I'm just the PROBLEM, and they are sick of hearing about it. I am depressed every single day of my life. I just don't know what to do anymore. I cannot work, the Neuro even asked me if I was disabled after it all. I have tried to find a support group in my area and there is none. They are too far away and don't have the extra money for the gas. I don't know what to do anymore, my whole life I have been a fighter and have survived a lot but I just cannot take the emotional pain anymore. Has anyone been here? And what did you do? I need your help...

2

The Lupus Foundation knows of all the support groups nation-wide. Contact them. They helped me find one.

No bullets! Please! Get some counseling. It's helped me out of many hard twists in my life.

I feel your pain. My family doesn't reject me as much as members are spread all over the USA and the world.

I am cut off. But, took a couple painting classes which helped at a HS that has an adult ed program.

You have to hold on.

3

Depression is very serious. Talk to your doctor about your meds and sometimes they no of support groups in your area. Maybe he could send you to a therapist that deals in chronic illness. Some times you just need someone to talk to maybe you could call a support line in your area.

4

Thank you both for your replies and friend requests, I deeply appreciate it. I do go see a counselor in my area, but haven't seen her in a couple months. I had an appt. Wednesday, but was so tired from seeing my Rhuemy Tuesday, plus it is soooo blasted hot and sunny here right now, i'm trying to stay out of it as much as possible. Thank you both again. I will try to continue to search for a support group... I don't know what I would do without this one. <3

5

There are so many days when depression hits me due to a lack of support. Then the thoughts come. Oh how easy it would be, I think, to just die. To stop existing and no longer be the problem. It sounds like such a wonderful solution. But it only sounds that way when the pressure is on. My new thing is to walk away from the pressure, re-groups self, then make it clear to those around me that I do not and will not accept their negativity. It is my life at risk, not theirs. They signed on, not me. If its too much, okay, they can go. Jehovah God will take care of me one way or another. The pressure is hard on them too. Sure. But they are speaking from not just pressure, but fear. A fear of losing you. When you understand that, you can feel more pitty for them and less anger. They are not meaning to make things harder. They just need to vent. They feel frustrated. I am sure you have looked at them after an ugly spout of words and said “I get that you are afraid and frustrated. I am sorry. I wish I could make those feelings go away. I love you, and I understand those feelings.” when and if we die, which I do not fear, they are the ones left behind with pain and longing. They are angry at us because they view us as the cause for that future. We are not the cause. Their love for us allows them to have such fears. Our love for them should move us to pitty them and try to give them as much good as we can during the time we have with them. It’s all we can really do.

I made sure that my mom knows what my wishes are if I die. She gets a small sum of money. She also has instructions on what to do with that money. Lol. I told her to go on vacation and dump my ashes in the ocean while she drinks a bucket of beers. Lol. No mourning allowed! Life is a celebration. Enjoy that life with those you love. Focus on the good things. Focus on love and positive thoughts for self and them. You will feel better, and have less issues with them. It may take some of them some time to turn around, and those who will not… Well, you may have to ask yourself if you really want a person like That around in your life. Guilt is not what should hold us to people. Love is.

6

We have all been there. Praying so hard for you right now. It is normal to feel tired and defeated sometimes but know that there is a purpose for you in your life for this journey. You as you are right now are a blessing to someone else and believe me God is going to send someone to be a blessing to you. You have every right to mourn the old you, but take care of the new life you have now.

I found that my family at first were unwilling to see the disease as they were in denial. They did not want me to be sick. Look for outlets that can get you out of the care routine once or twice a week. I volunteered at the local library reading to kindergartners for one hour twice a month.

Remember we take this journey in peaks and valleys. Be blessed

7

I know how u feel i am just coming out of one of those places where i told my family im tired and i just cant go on,its so hard when you cant make anyone understand what u are feeling.i was in a very good relationship and my lupus flared up and he was gone,so i guess it wasnt as good as i thought it was,i wish i had the magical answer but all i can tell u is i found out im better off alone,because im the only one who really knows how i feel,u need to concentrate on u,and stress is the worst for lupus,just know that your not alone in this and hang in there it will get better,but u have to put u and your health first,,i hope this helps at least a little,your in my prayers,hope to hear from u soon ,good friends are great support

8

I get how you feel, really! If i understand you, you are adult living with your parents still...they are in stressful and financial tight places as well..taking their stress out on you?! Also you have head tremors and i think you mean physically where your head moves..but if they happen to be inside your brain and you are taking antidepressants..well it might be them. Wean off with doctors knowledge and they might get worse as you wean where you say i need more again...but if you stick with it slowly and get them very low or stop completely the head tremors will stop. Took me over year but i got off them ..really creeping feeling things..many people experience this side effect but many doctors do not acknowledge this side effect.

Also have they checked you out to make sure neck problem is what is....there are few autoimmune diseases that are very much like fibro but not..polyrheumatica is one and i just found out i have spondylitis in my entire back, neck and hips..hurts and spine is crumbled mess. If you have teaching hospital near you..i go and get 2nd opinion if you can.

As to support group...i also do not have any near me. NADA...called all the lupus groups and finally got hold of woman who use to be head of one kind of near me...she said just had too many problems with time..snows here and passes close in winter ..point is i get it that it might not be option...look for fibro or autoimmune. Call your health dept for your city and county about what services they might have as to this. I also suggest going to counselor ..one who understands one of your diseases preferably . They are great support plus they should help you with your family problems as well.

There is game called SUPERBETTER online...was started by woman who hurt so much she could not get out of bed which is worse thing one can do. She go this at some level...slowly made this game with help of people who get chronic pain and disease..how it destroy your self esteem etc. So you might take a look at it.

I often feel as you do!! More often than not as of lately. I also was sick basically all my life too but compared to my brother i thought well i am not so bad! But compared to my healthy friends..well i was not well and only got worse as life got older BUT though i could not do my dream...i did find a job that i really enjoyed! I found doctors who truly supported me and were as much my friends as doctors. I knew they not let me die with out a fight...especially after my brother did die from autoimmune disease like mine.

SO my point is...do things that you enjoy, make you happy!! Try to get outside daily..sunlight and nature both are important to us both physically and emotionally so get out twenty minutes daily if you can. If you do set a goal like that and you do it..pat yourself on your back...praise yourself often!! SuperBetter game teaches you this!! Plus teaches you to get out slowly but you do and will reach your goals so you feel better about yourself.

Most of all.i hope you find something you enjoy...music, reading, art of some kind be it painting or knitting but find a creative outlet!! Takes you out of your body and you will feel wonderful. Just try to believe that life will have it ups and downs and it will not always feel this negative but only you can change it and make it better...that is hard part.

If you like getting out but walking hurts..as it can with me...i rode a horse to get high in the mountains! Point is there are always solutions! I say that having money sure makes it a lot easier but even millionaire can have bad health and money will not change it. BUT IT Helps Greatly...but there still are solutions, always. Journaling has helped me my entire life to find those solutions and might help you as well. Have fun doing it..always the library where you can get free books on it!

You might need to move out and find a part time job...SSI will retrain you in job that you can do ...you might start thinking of something like programming, webdesign, laboratory work..all kinds of things where you do not need to move much.

Most of all, you are not alone!! most if not all of us have felt same as you....many been in bad situations like you are now..i know i have been and it is just horrible but it does slowly get better! We are all here for you...you are not alone and others on any other support groups are there for you as well! feel free to write here as much as you need too..let it out and know that you are not alone.

I just hope you find something in your life that will give you joy every day...be it puppy or kitten..garden or a craft! Music or singing daily..just something that makes you feel joyful! I hope you find it soon and do it daily..maybe 3 or 4 times a day if you need too!! but you are not alone and life will improve!

9

I totally relate to where you’re at - been there many times in the nearly 15 yrs. I’ve been dealing with my fibro, lupus, spinal & other arthritis problems, etc. etc. I think one of the things that grinds all of us down so badly is the unrelenting nature of these conditions. I literally have not had 1 single day since Oct.'98 when I didn’t hurt & feel the crushing fatigue - I’ve often told my family that if I could just have ONE day a month when I got a break from it all, got to feel like a normal person, I’d probably tolerate all of it a whole lot better! So I totally hear and understand your pain and frustration, but we need you - and more importantly your family needs you - to hang on by your toenails a bit longer. In my experience, while it never goes away entirely when you have the multi-factored conditions like you & I (& so many on this site) have, it DOES tend to have a cyclical nature, both the physical issues, the depression, and the real life problems, and if you can ride out the worst of the storms, eventually some things will improve and lighten up on you for a while.

A few practical suggestions, and forgive me if you have already tried any or all of these:

  1. I would never have made it thru the SSDI process without a lawyer who specialized in it by my side. They work in a fixed percentage of your award & almost always will give a free initial consultation. It’s well worth it.
    2, don’t underestimate what sheer fatigue and poor &/or inadequate sleep will do to you. Do everything you can to optimize your sleeping conditions - even if it means a seperate room from a snoring hubby! A totally dark, totally quiet room is essential, as is a regular schedule. This is one i had to learn the hard way, and it’s taking years for my body to catch up after all the years of 3-4 hrs a night of terrible sleep.
    3, stick with the counseling, and if at all possible, drag some of your family in with you now and then. They need a safe place to vent, too, and an objective 3rd party might be able to help mediate some of the issues causing friction and pain.
  2. My c-spine is a total mess, too, I had 2 fusions in my early 40’s & need more now. That reaction from that neurosurgeon sounds like BS to me. He should at least have proposed some alternate treatment like nerve blocks or a TENS unit or something! If at all possible, I would get a second opinion. Some MD’s cop a real attitude when it comes to patients w/fibro (our main rheumie here won’t even take fibro patients!) and that neurosurgeon may have been another jerk like that. With ALL doctors, remember, they work for YOU!
  3. Last but not least, definitely seek out a local support group, and take advantage of this wonderful group of folks as well (the Fibro site here is great, too.) But I’d also suggest seeking out some other passion of yours, some interest or hobby, and finding a group in your area and/or a board online and making some friends thru that. It can be scrap booking, gardening, crochet, writing, reading mysteries…whatever makes you happy - whatever it is, it will help take your mind off of your health and personal problems for a bit, and give you a little much-needed escape and fun! It can be something as simple as finding a fan site online for your favorite tv show! I did it (mine is writing fanfiction) and I’ve literally made friends all over the world, some of whom I’ve even met. It’s truly helped keep me sane, helped me to not feel like all I am is this sorry collection of “conditions”, and it’s gotten me through some of my lowest grimmest moments.

Hope at least some of this helps. Wishing you a lighter load & better days,
Hugs!
hg
p.s. feel free to friend &/or pm me anytime. Really!

10

What a wonderful Community of people who understand your situation! ALL of these suggestions are excellent and compassionate.
Lupus/Auto-Immune diseases are difficult to navigate and can make you feel isolated IF you let them. You have the power to your own role as an advocate, please do not give that away. If there are no support groups near you, then you can start one yourself or go to a Fibromyalgia Support Group near you. I live in a small, rural Town and a few Lupus patients got together to begin an informal support group a few years ago. This has been a blessing!
When I could no longer work as a nurse, I began a few hobbies to add fun in my life. I did seek out counseling and set goals. Helping others, volunteering in any capacity helps you to get your mind off of the negativity and brings joy into your life. There are things you can do to turn this around . :slight_smile:
You have come to the right place for help. I will keep you in my thoughts.
Please keep us updated. ((Hugs))

11

I will write more (probably tons) on this later when I’m on a computer, since it hits VERY close to home for me, but I wanted to say for now:

  1. It is not YOU who is worthless and a giant burden, but rather the depressed thought pattern suffocating you into thinking those things. Your family is making it far worse than they realize or could probably ever understand. Nobody really can unless they’ve been seriously depressed, and for our case, they must have had serious chronic illness AND depression to understand, but in your case also severe chronic pain!!
  2. Listen to the above list of things burdening YOU (not the rest, forget their selfish a$$es for now, your very life is on the line!) and realize you are 100% valid to feel sorry for yourself, not like shallow self pity like when the brats on facebook and twitter write the idiotic “#firstworldproblems!” after complaining obnoxiously about something trivial, but to feel deep, deep sorrow for the life you could have had and are not having, plus even MORE grief for how much harder the people who supposedly love you are making it right now.
  3. Maybe they do really love you and are doing the best they can (which is not enough, but their best try… Keep in mind they will never be as strong as we are in enduring this, because they can sub out or jump ship when they get tired, while we keep bearing down in the wind!) Maybe you normally know this about their sincere but gimpy love and help, but your depression isn’t letting you experience any of the love they are scrapping together. No matter how great or not great they are, depression will torture you by only allowing you to experience the “not” aspect of EVERYthing.
  4. The depression is NOT you. It is a dark cloud that has descended on you, blocking out the light you depend on for survival and also the light you normally shine on others! Your family may be most resistant of all when you need it most (while depressed) because their hearts aren’t big enough (and observations aren’t keen enough) to let you off the hook for holding it together for their sake all the time!
  5. CRUCIAL POINT: If you have ANY persistently troubling thoughts (not just the passing ones that make you weep to think of having, but ones that nag you. hound you, or begin to control you) BE AROUND PEOPLE. People you like or not, know or don’t know… All of them would be useful in stopping or addressing a suicide attempt. But even if it’s not as severe as all that, being around humans can help, most of all if you can find the ones who don’t need you to be their ray of sunshine and have big enough hearts to be YOUR sunshine behind the cloud, even when you can’t see it. You deserve to express yourself the way you truly feel, so don’t apologize for it. And you certainly DO NOT deserve these feelings in the first place; you have been handed a short straw and people and life around you keep nipping it even shorter. Hang onto it tight and know that the time to grow again will be later when the sun comes out again for you. Hold on for dear life to the knowledge it’s coming eventually if not soon, there is help to break through it sooner than later, and that you are so strong to get through all you’ve been through that you can wait out this major suffering also.

I just bought a short paperback book called “How to BE Sick”, written by a Buddhist trapped by extremely debilitating chronic fatigue syndrome. I get more than a little jealous of how amazing her husband is to her, or the fact that they had and always will have plenty of money to handle her lost work ability, or the fact that CFS is not actually life-threatening nor progressive… But all the same, I extremely appreciate her hard-fought wisdom on how to cope emotionally and spiritually with truly devastating days, including how to fully accept how awful they really are. Then the anguish passes by more easily. If I had your address, I would send you my copy with a reminder to you of clouds parting. LOVE! <3

12

You are not alone. I hired an attorney to help with getting disability it took 3 yrs but so worth it. They received a portion of my settlement as there pay. Completely worth it. I was not diagnosed with lupus at the time so we were going with Fibromyalgia which is very difficult to prove to the judge and major depression. The group of attorneys is called " The Disability Group" 1-888-236-3348 They will tell you over the phone if you have a case they can help you with. Do not get discourage when you are initially turned down from the SSI they just do that.

I too have been sick most of my life not to this degree.


13

Just chiming in to say that I can do no better than echo every word of Hellongoddess.

Also be aware that relationships are trade-offs. Each member of your family gets things from you. Take some time to figure out what they are and then remind them of it.

I have presented a bill for guidance and advice and reminders and support and jokes.....whlle pointing out that life is better with Lurch in it than not. It is self-empowerment.

Regards from Rosie

14

I am praying for you and wish I could give you a big hug right now! I'm sorry you are feeling the way you are right now...but just know that some days will be better than others and there IS a better day ahead. When others aren't experiencing physical pain it's sometimes hard for them to truly empathize. Heck, I've suffered and when I do feel okay I really have to remind myself of what it was like so that I'm not insensitive to others. My family likes to motocross and I have not been able to for about a year now. They all just now walked out the door to go and I was tempted to think, "Well, they could care less about me." But I KNOW that's not true! Sometimes I wish they were couch potatoes so we could all be together, but it is what it is.

So, I am home alone today...but not really...I know people on this board (including you) are in the same boat so we are not truly alone. I also have the Holy Spirit inside of me and He is a great comforter! :) I will keep praying for you this day reallyraffy!!!!

15

Dear I can say that I know just how you feel. My ex-husband left me for another woman. He couldn't take the doctor visits all the time He really Thought I was a hypochondriac in the worst way.I have since remarried a great guy.. I don't know how young you are but if you have worked enough please try and get disability. I can even give you some pointers. I worked in the medical field almost all my life and I managed to get my disability on my own in less than 9 months. That way I also didn't have to share anything with an attorney, it was all mine!!! So, fire away with the questions. Anytime, and I do mean, anytime you need a friend you can email me. I am here for you. My kids live far away, I have 3 and hardly hear from them. I also have 8 grandkids, don't see them. I am also power of attorney for my 2 elderly parent who live in a nursing home 500 miles from me. I live in Tennessee. It has also been hot as Hadas here, too. I can't go out in the heat much as I get sick. I take 14 meds now. Finally got something for pain. Had to go off NSAIDs as they damaged my kidneys and now I have Stage 3 kidney disease, too. I don't have any friends. For support group, I have one on line. Mostly just talk with a lady from Wales. I have talked with her for years. Not much support, as you said people get sick of hearing you complain, unless they too have Lupus. I am here for you, Girl!!!

16

I was thinking a lot about you last night and today. I wanted to convey to you how much your life is worth living. How there is only one you and that that person is special. Even if you don’t see that, it does not make it less true. Instead, you need to remind yourself of what is beautiful and special about you. Go to the mirror once a day and look at your self in the eye and say “I am beautiful. I am special. I am worthy of love.” this may sound dumb. But when you have to look at yourself and say it with feeling, with belief, then you start to believe it. It’s true! You are all these things and more, and we love you. Even though all we know is the little you have shared, we love you. If you learn to love you, then you will want to keep fighting. Your life is worth the fight.

Another person suggested going outside to enjoy an aspect of nature that appeals to you. I second this. It is those small things that make life worth living. Watch children play. Go sit in a park or the woods. Watch the bunnies or squirrels play in the early morning. Feel the breeze on your face. Feel alive!

17

First please know you are not alone. My extended family has been very cruel. Oh the stories I could tell. I became ill right after the birth of our third son. That was 24 plus years ago so I can tell you it gets better. Lupus is a part of your life now but please don't let it control you. There will be rough days feeling sick but it is time to find your passion. Since there are no support groups around I have a much better idea. Find an art group, a craft group or something fun you can do for yourself. Check craft stores, churches and local art groups for weekly classes. It will be the best thing you could ever do for yourself. Support groups you talk about being sick. But when you find a creative outlet you can actually think about something fun to do. I have found a lot of people in the classes suffer from other illnesses as well so we all have a wonderful connection. I am loving life now and although it sounds weird lupus has been a blessing of sorts. I would not have started painting if it had not been for lupus. I am now a professional artist after four years of serious painting. If you don't find a local class send me a message and I will teach you by emails. Actually that would be a lot of fun for us both.

As harsh as it sounds I no longer have aunts, sisters, etc. in my life who have been mean because I was sick. I don't need the negativity. We sold the house too and moved out of state trying to help me get better. No disability for me either. Find a good lawyer that does it on contingency and let him fight for you. It won't cost you anything unless he wins and then he will take it out of the profits. It is along process so don't count on it and just a lawyer handle it. There is so much good and exciting about life once you find that one fun thing you enjoy. I am here to help so please send me a message and I will be glad to teach you art by emails! Take care dear friend - I understand and I can guarantee it does get better and you can actually have a fun life despite being sick, Kathy

18

Kit kat- you could.really teach someone to.paint via emails?

19

Hello Reallyraffy, my thoughts and prayers are with you, I have had some days when I feel very depressed and it seems to be even worse at the time I am having my monthly cycle, my feelings are all over the place at times, but I am praying for your strength because life is very important and I pray you never get to the point where you take your own life, when things are to hard for us to bear that is when we have to give it over to God and let him be are strength when we are week, he is a God who will never leave us or forsake us, please cast all your cares on him because he cares for you very much, and pray to him for strength when you have those thoughts of taking your life, he will send his angels to guard you and keep you in perfect peace if you keep your mind stayed on him. I recommend that you get a lawyer that specializes in helping you get your disability. Best wishes to you stay strong and keep the faith, and know that God is able to do all things but fail ! God Bless You.

20

Sure - it would be fun! For those of us sick sometimes emails is all we have!!! Maybe we should work on getting some kind of fun email art class started. We'd all have a blast!

Flutterbymare said:

Kit kat- you could.really teach someone to.paint via emails?