I am thirty three years old and the last two years have been terrible. From the time I was a child I remember having issues with feeling like my bones ached. My mom always said it was growing pains. Then I had IBS, depression and anxiety durin my teens and early twenties. I got really sick once while in college and was sick for a month, had every text done, but no diagnosis. I eventually got better. I got pregnant with my daughter when I was 29 and was sick and feeling terrible pretty much the entire pregnancy.once I had my daughter I felt okay. Six weeks later I was rear-ended while sitting at a light. The other person was going about 40 mph. This set off a chain reaction of doctors appointments, tests, and little answers. I did have herniated disks in my lower back, but all treatment was having little effect and I was just in more and more pain. I was diagnosed with fibromyalgia and put on tons of needs, had tons of injections, etc. while they thought there still must be something else. I tried continuing work during this time, but it became impossible and I went out on disability. I thought I was approved for short and then long term disability and then they denied my long term claim (which I’m still fighting). I was out of work for a year until I was flat broke and had to go back to consulting. The job then asked if I wanted to work full time and I could do most work from bed so I’ve had to take it. But now I’m totally stressed out because I can barely get my job dive, my husband’s job situation is not good either and we’ve just been surviving. My house is constantly a disaster, I constantly feel guilty about what I can and can’t do, we’veost or relationship with my husband’s entire family because they didn’t understand. After being rushed to the ER last week (long story), my sister’s intervened and told my parents who were in another state, how bad things have been for me (previously I tried covering it up) and luckily they spent the last week plotting and planning on how to support my husband and I. My mom flew in late last night and I’ll see her for the first time today in months and she will be living at her house, but helping me with mine. I am relieved, lucky, and so thankful. I’ve been in a state of denial in terms of how bad things really are and I am finally ready to face the fact that I do have two serious conditions and I do need help and support. Nice tomeet you!
Hi, Eve.
Welcome to our community. I am sorry to hear of your dfficulties. It seems things may be on a bit of an upturn. I think it is wonderful how your family has come together to support you. We’d love if you could share any insights on how your family has rallied together. Fibro is an invisible and often misunderstood illness and some here have difficulty getting family and friends to understand and be supportive.
Thanks for joining! Please check out our Fibro 101 guide as well as it is a tremendous resource.
Hugs,
Laurie
Welcome Eve!,
You have come to the right place. I understand your plight having been down the same path. I survived the preschool years and if you can do that you can do anything. I m sorry to hear you were denied long term disability. I did not apply for a few years because I was afraid I would be denied. I wish I could give you advice on that process but for myself, I am not even certain that I qualified with just fibro. I was also diagnosed with bipolar.
I think there is something safe about being in denial. Maybe we want to hold onto the idea of having a normal life-having it all. I think after you get a little rest with your mom around you can focus on prioritizing what needs to be done daily and what can wait. Don't stress too much about people who don't understand-they may never understand . Cherish those who can support you-even if it is only 2 people. I have a therapist who has the honor of listening to me complain about what I don't have and a friend who I just laugh and joke with. My sister was wonderful -once she heard that I was in the hospital for exhaustion (2006) she flew in from out of state to get me to the right doctors and helped me fill out the disability application and then cleaned and organized my apartment. She was baffled she didn't understand why I did not contact her earlier (denial). '
Hi Eve,
So glad you are getting help from your family.
I was on STD and ready to go on to LTD and my insurance company denied me in Jan 2015. I understand what you are going thru and it’s very upsetting as you have paid for these benefits. I got a lawyer to fight the insurance company for me. The type of lawyer needed to fight these insurance companies is an ERISA lawyer and there aren’t many practicing in this field.
If you haven’t filed for Social Security Disability, you might want to call and go in to fill out the paperwork so they can see how ill you really are. Take with you a list of all your problems, the doctors treating the illness and the last time and next time you will see the doctor treating you. List everything. I even listed something I had when I was in my 20s and I’m in my 50s.
If you have any questions, please let me know. We are all here to help in any way we can.
Lots of gentle hugs.
QW
Hi Eve,
Nice to meet you. I’m glad your mom is able help. I also have Fibro and Arthritis also. My mom is a huge help for me when I don’t have energy and helps me clean the house, organize and provides emotional support. It takes a lot of strength to face what we have and how it limits our ability to do normal things. I’m still finding my new normal. It is a process. You will find your new normal as well. The first phase I had to deal with was the “facing it” phase and it sounds like you are doing that.
Hugs,
Sara
Thank you everyone for the warm welcome!
To answer your questions, I have family that is super supportive (now that they know how bad it is) and other “family” that left me (and my husband and daughter) high and dry. I’ve been with my husband since I was seventeen years old and I’m in my thirties now. I’ve gone through IBS, anxiety, depression and major back problems over the first few years of being together. We thought that was rough, but my husband was always there for me. My extended family never knew how bad it was. When things got really bad during the past two years, my husband tried explaining it to his family and how ridiculously difficult it was for me and him to have a baby, both work full time and me manage my health. All they cared about was themselves and what they were or weren’t getting from us (not enough time with their grandaughter- when we could barely survive day to day). Any help they offered was on their terms and really wasn’t “help”. They’d say “come over for dinner and bring the stuff to make it over here”. This would be during the week when we had work and daycare the next day! I’d be so exhausted, it would be a cycle of misery, and that was before my health got to its worse. I asked them if we could do dinner in weekends (or not at all!), but that wasn’t good for them. I found out later it was because they were booked with their friends in weekends! So that was hurtful.
Another strange thing was instead of just asking how I was, my MIL would say stuff like “so, you’re feeling good?!”. My husband thinks it goes back to her career in sales and that she never wanted to hear the bad. This way she felt good about asking, but backed me into a difficult way to say “no I’m not well at all”. My FIL never could keep quite long enough to listen to how I was really doing. This led to my husband fighting with them back and forth via email. My husband and I wanted to go to counseling with them, or at the very least sit down to have a serious talk about things, and his parents refused saying they thought we should just move on and forget about anything we were upset about. So we haven’t talked to them in about nine months. They don’t even drop off cards for holidays (they live five minutes away) for their grandchild, so that tells us we made the right decision. But I am incredibly sad over the loss of the relationship, more so than my husband.
My older sister is my best friend, outside of my husband, and she’s helped me every step of the way. She doesn’t always understand things, but she really tries. She really has seen the worst of it. My younger sister was less in the loop and I hid it from my parents a good amount because I didn’t want to admit it and burden them. But last week things were so bad, my sister’s called my parents (five hour plane ride away) and my mom came back to help me almost immediately. She couldn’t have come at a better time too because I am doing really bad now. She really is the best! My mom had breast cancer when she was in her thirties with three young children, while living abroad for my dad’s job and having her mom dying of breast cancer at the same time! Talk about a lot! She had to fly back and forth for treatment and to take care of her sick mom, while she was sick! I guess that is another reason I felt guilty about telling my parents about how bad things are. I don’t want them to have to help me, but I’m really learning I need their help right now and they have no problem giving it.
I’m really struggling right now with stomach issues and my next GI appointment is tomorrow I think, so I’m hoping for a miracle! I can never eat normally, I’m constantly constipated and nauseous and in discomfort. I’m going to search the website for info on prescription drugs for constipation because I have tried EVERYTHING! I just feel like I am carrying rocks in my stomach all of the time.
Thank you Eve for sharing more about your circumstances. The stomach issues that come with fibro is no fun.
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