Advice on how NOT to want to runaway from it all

General
1

Hey everyone. Just need to hear some advice on how to cope with feeling like nothing but a "Disappointment" and burden in everyone's lives around you? I am really a mess right now, and just want to run from it all. If it wasn't for me, my kids would have their normal lives back, and my husband would have a wife he could respect, parents wouldn't look at me like "when is this going to end, and not have to help her and her family". Just when I thought things were leveling out after having to sell our home, move back to where I was from (which I never wanted to do), it's just getting worse. In a nut shell we have struggled to just survive while waiting and waiting and waiting for my second hearing to be scheduled. It has been over a yr now to go appeal the first judges decision. Why must we lose everything? and our lives be completely destroyed, not just financially, but they take our self esteem, our self worth, our relationships, and make our disease worse with flares from worry, crying, depression and anxiety? Our landlords have decided to move back in, there is nothing to rent around here that has 3 bedrooms and will accept my beloved dogs, who are the only thing that keeps me going everyday. So here we are getting ready to pack again a yr and a half later, right before my daughters high school graduation, and moving into a camper on my parents farm. The my 2 kids (17 and 18) will stay in the house with my parents. She is upset that her senior year is being ruined by all of this, that it shouldn't be this way. Sigh...my heart breaks. The guilt I carry every single day is just too much to bear. We are hoping that this will give us a chance at least to pay off loans, etc. I have not hope left of ever having a normal, stable life again.

Now, my husband has a really good job, and one of the best insurances I have ever seen, which is the biggest blessing. But trying to go from 2 incomes to 1, has taken it's toll the past 3 yrs. I am on my FOURTH year of my disability filing. Now when I first filed in 2011, I had not been dx'd with SLE. I had Fibro, tremors, CFS, Degenerative Disc Disease, and Spinal Stenosis. I had already been through one major surgery in my c-spine. Now I need surgery at all levels of my C-spine, my thoratic is now bad, SLE, and lots of other stuff but my mind is shot right now and can't think. How in heavens name can they give someone disability because they can't be around other people, or claim they are crazy, even alcoholics!!! True story on that! When I sit here unable to move somedays, and they reject mine?

Ok I'm sorry, this has taken a different curve, but just get frustrated.

HOW DO I NOT GET IN MY CAR AND RUNAWAY?!

I am tired of hurting emotionally, and dragging my family along. It's not fair to them.

Has anyone ever been through anything like this? HOW did you deal with this, and what did you do?

Did anyone here, get into their car and run?

2

Thank you Ann, I am so thankful for this group.

3

Your story sounds similar to mine, except you have blessings that I don't, you have a husband as a support system and family that has a place for you to move too. So, count your blessings. I am forced not to work, as my job placed me on suspension without pay for 11 months, which means, I am still active with my contract and can't be a salaried employee anywhere else, but, I am not paid for 11 months. The second job I secured, had a contract with my former employer and they decided to end the contract with me. So, I have no money, facing eviction, no where to go, no partner (same sex is my preference), Nothing!!!. I have applied for disability, but, my "well meaning" doctor, wrote I am not disabled only wrote accommodations, before he saw my blood tests revealed a bladder infection that needed immediate treatment. I say this to say, If I am not running away from life, you better not!!

Remain strong and have your moments of weakness but move forward and look at your blessings in how they are. Be there for your kids, if you are far away from their school or friends, then muster up the strength to take them around their friends more often. If you are packing, pack their items give them the time with their friends. Do little things to make your family know you appreciate their sacrifices. Love your life.

4

I’m so sorry to hear what you’re going through.
I’ve been feeling the same way… Ann can attest to that. She keeps telling me to hang on. One thing that stood out is the dogs. I’m super attached to mine too. Could you get your therapist to say that they are therapy dogs required for you mental/emotional health? Then they can the rejected anywhere.

5

Oh, reallyraffy, I DO know what you are going through. Unlike you, I am alone and my children have given up on me cause they believe I just need to exercise and I will be fine...don't want to hear or deal with what I am going through. Thankfully, I have a roof over my head. I don't know what to say to you. There is a book

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

that I have been reading and seems to help a lot. Don't let the Buddhism scare you off. You should be able to get it at a library.

My thoughts are with you!!

6

I'm so sorry to hear all about the problems you are going through, waiting so long for your disability...Have you told them about being DX'd with the SLE now? I'm wondering if that would help with the speedup.

I personally have not much support from my family. I do know how you feel with this disease effecting your family. Do they understand anything about your illness? Is there a support group near where you live? Can you have them go online to read about your SLE, and all your other numerous health issues? Your children are old enough to understand, that is NOT what you want...Heaven forbid, no one 'wants' to be sick...

Please try to find help in coping, do you have a church that could help? Reach out...don't let this tear you down emotionally. I also have been in despair, but we need to find the strength to over come it. Do your parents understand?

I wish you strength, courage, hope and peace...you are in my prayers

7

Thank you for that book recommendation, Susan. I've been wondering if there was something out there similar to this. I'll be looking into getting it this week!

8

Sounds like you have a lot of positive in you’re life too. Sometimes the negative shadows over the positive, & life will always through curve balls; but try and be thankful for what you do have and not mourn what you don’t.
Life will always be hard; there’s nothing easy about it, but at the end of the tunnel you will find a light :slight_smile:
Good luck!

9

Thank you so much! Number 1 and 2 is difficult here. I try, but they don't really care. It's like they never ask how i'm feeling or can I do something for you? So happy you have a great support system :)



dkel9307 said:

Hi reallyraffy - my heart goes out to you.

I can empathise a fair bit - In Oct 2012, all was fine in my life. Working hard, travelling every week in a global role, lovely wife and three beautiful kids. Then, in 5 straight weeks, our daughter (who had had a brain tumor removed 6 years earlier) came down with epilepsy, a family member had a heart attack, then had another one and died, a person in family got severe depression and tried to commit suicide, my son broke his arm and I got bitten by a tick...that led to chronic severe Lyme Disease and Associated Co-infections (bartonella, babeasia and ehrlichia). During the same period, I came down with Chronic Venous Insufficiency and Erythromelalgia.

As of tomorrow, I am medically retired. I am severely disabled. Waiting to hear from insurance company re Income Protection and Total & Permanent Disability insurance - even if I get all that, we are OK financially for 3 years, then we are on our own. Our children are 16, 14 and 5...so a long way to go with school and university costs etc.

However, here's where I might help, as I have been through dark periods...including thinking that my family would be better off if I died, as we have good life insurance on me. A work colleague, when hearing about my condition, wrote to me "Some in this situation will ask 'why me?', when perhaps the better question is 'what for?".

I also can see some blessings - I am at home with family all the time; I have connected better; I am being a better husband, father and friend (as opposed to income earner); I have met lovely people on support groups like this; I have learned how to use social media; I am now even helping people (e.g. moderatpr on the Erythromelalgia and Lyme Forums); and the forums have helped me and my mdosctors to better diagnose and manage my situations.

I also know that my family would much rather have me alive than have money. We all talk about the value of life - that's one things...it's another when people like you and me are as ill as we are.

I also have faith that "it is what it is" and I will eventually get better or stay the same. Has taken quite some mindset change, but to me there are some key things:

1. Family loves us and wants us more than money

2. Having people understand our condition is so important

3. We have to research and take control re our conditions - often we need to lead our medical professionals

4. Know that what you are experiencing is real - don't let anyone tell us otherswise

5. Change doctors if they start saying it is "all in our head" or "it is exaggerated introspection"

6. Plan for worst case (when we know we can still be OK with worst case, a lot of pressure goes off) and hope for the best

7. Have some tips to help when we are down - e.g. I think of our 5 year old and how much she needs me; I think of what life really would be like for my family without me - the pain and impacts would last their lifetimes; thank of "what for"; focus on the blessings that come with the pain.

8. Whilst our family keeps us alive, having interests keeps us sane - I have found these support groups invaluable.

I trust this helps, even in some small way.

All the very best,

dkel

10

Hello, we all go through thing's of this sort !!!!! Don't feel like the world id against you , the matter's that we see from our point of view , namely, LUPUS ,we feel this way !!! Lupus has a funny way of fighting . Which , when we fight to be NORMAL lupus step right in and we are subject to get stressed out and confused , also our thinking goes CRAZIE . But relax and don't fall to the victim of trail with LUPUS . Do what it takes but relax , breath thing's will work it way out , God is with you at all TIMES ( if you put the FAITH ) there . May this help you ... Beverly L.