This is my story

I’m sorry this has to be my first introduction to this community, but I feel like its best if I tell my story. I need to get it off my chest and to get the opinions of others who’ve been in similar situations. I guess I’ll start this off by saying that regardless of the details, I’m stable, I’ll get by, but I know I need to get the ball rolling and find a way to alleviate my situation.

So june, six years ago next month, I woke up with pain in my shoulder. I was living at home at the time being 20 and still in college. I spoke to my mother and we both agreed I’d probably just slept funny and pulled a muscle. The pain continued on six months later, having no job and no insurance I went to a clinic to see someone, after a couple xrays and some tests, two or three appointments, they told me it was either all in my head or it was something I was doing, a pillow, a chair that was leaning something of that nature. So seeing I wasn’t going to get much of anywhere as I was, I started powering through college to get done. I took 6 classes one semester and 5 the next to be able to finish that last year. Luckily for me I was already pursing computer science and all of the higher level classes were only given online anyway. This is what allowed this to be possible.

Luckily graduating with honors provided me the leg up to get a job at a nearby call center, which provided the income and insurance I so desperately needed. So I started going to another dr that was recommended to me, and a chiropractor, and a neurologist, The thought at this time was that I had myofasical pain syndrome since the pain was centered in that one area. We tried injections with some success for about two weeks. We also tried two separate rounds of 3 months of physical therapy. I also moved out at this time due to the extra stress from living at home. All of this I accomplished in a year and a half. At that point I fell over, My job was public facing tech support and our pay and performance was determined solely by the people we helped and how we were able to help them. This was very stressful, and I held up as long as I could but my blood pressure was climbing higher with every dr appt, and I reached a point where I just couldn’t fight it anymore.

About 8 months into my living on my own my now fiancé came to live with me and is a huge help and an amazing pillar of support for me, I have no idea how I would have survived without him. He was still living with me when I left my job and I hunted for a job to no avail. Since we weren’t married my mother would only allow me to move back home by myself and I knew if I went back to that house I would only get worse. His parents allowed us to come and live with them in their guest bedroom which used to be his. That was about a year ago now. Luckily given this unique situation allowed me to receive a good bit of financial assistance, and through that I’ve been able to see a rheumatologist and was diagnosed with fibro as of march. We also found hypertension, sleep apnea and a couple of other things.

I recently tried to go back to work, Simple job just answering phones and directing calls, filing papers and doing administrative type work. This was the easiest, low impact thing I could find. I lasted one day, on day two after 13 hours of straight sleep I was still so tired I was just angry. I was tired to the point my body wanted to burn any social bridge in order to allow me to go back to sleep. I knew if I attempted to work like I was I would have been fired.

So here I am, almost 26, and after all my hard work I’m barely able to get up and down anymore. Around this past November the pain from my shoulder spread into my hip. Of course no physical “source” of the pain and as is typical there’s nothing medically wrong with me. (If I had a penny for every time that’s been said to me I’d be rich).

I’m here because as I keep progressing and continue to get worse, I’m more and more isolated. I’m lonely, I’m angry at being trapped after all my hard work to get out, I’m scared out of my mind as I’m unable to do anything but watch the bills pile up and I really don’t know too much of what to do.

It seems like my best option at this point is to attempt to look for an attorney and start the disability process before it gets any farther away from my work being valid. I know as young as I am this is going to be difficult to explain. It’s a sad thing explaining on paper that you’re having trouble getting up and down to go to the bathroom, that if you go and get groceries it takes you two days of sleeping and laying in bed to recover, but I don’t guess I have much of a choice anymore.

If any of you have any input it’d be appreciated. I’m just sitting here, researching and trying to figure out what to do.

Hi Maradia,

Welcome to this community and I must say you articulated your circumstances and feelings so well. A lot of what you wrote resonated with me. We are not in the same age range, however I am angry too with how things have turned out for me as well. I feel why did I sacrifice so many year's worked as hard as I did raising my kids and thinking one day it would be my turn. When that time came it was exciting and scary at the same time, but I was up to the challenge! I moved to another Province...with no specific job in mind but I was motivated and positive that life was going to get better. I was bright eyed and bushy tailed and ready to go. I signed up for courses at a technical college to upgrade my computer skills...applied for volunteer work all the while looking to secure a decent paying job to pay the higher rents. Just a simple life as at my age I wasn't looking for the huge career, but you know something to feel productive, feel good at what I do and pay the bills and life is good. The first 2 years were hell and took a toll on me trying to fit into a new city...trying to find a job and living off my retirement savings in the meantime and watching it dwindle. All the while pushing myself to succeed as I would be damned that I didn't make this change for nothing! A little over the 2nd year I could feel the stress and my system was drained...I became sick with flu like symptoms and well it became worse with each passing day the pain increased and for 7 months I ran to the doctor, had x-rays and still no diagnosis. I was terrified, stressed to say the least, but most of all in debilitating pain! My doctor would give me anything stronger than a Tylenol 3. Long story short I finally found a doctor who diagnosed me started me on medication which did bring relief at least it was better than before. I couldn't return to work and ended up moving back to where I started from as the rents were more reasonable. Right now I have applied for disability and waiting for a decision. Even though I found a place with a very reasonable rent I will most probably have to find something cheaper. Even with disability (providing it's approved) it's not much. I will have to muster up some kind of energy (God willing) to find a part-time job to pay the bills. I try to tell myself it could be worse...but I fear the unknown of what the future holds. I am trying to stay positive and am fortunate I have a supportive family emotionally. However, there is no place I can go if I cannot afford my own living expenses. So I know this isn't about you, but we all have a story and were all angry and afraid for what our future holds. I feel truly sad that you are so young and the challenges you have a head of you. No one deserves this and Fibro is so unpredictable in that one day you could be feeling not too bad and the next you can't even get out of bed. What are we to do? That is a very good question and one that I would love to have the answer for. That is why I joined this support group because it doesn't solve my problems, but I sure know I'm not alone in how I feel and what I am going through. There is a comfort in that somehow. I am sorry that I cannot give you your answers, but you will definitely hear from others with maybe some insight. I think starting the disability process is a wise one to start. I wish you the best with everything and hope whatever happens you come out on top! Take good care of yourself. Gentle hug...Sue (aka Dreamcatcher)

Thank you so much for your reply. As thankful as I am to know I'm not alone in this I'm sorry there's so many other people suffering like I am. Still we have to keep going, I'm trying to hold it together, hopefully my story helps someone else too.

It takes a lot of courage to tell your story and it will definitely help other's! Stay strong Maradia! We'll all get through it...there is strength in numbers and I'm glad you found this site to support and help you through this!

WARM WELCOME
Hi Maradia, thank you for sharing your story, it’s only been up 6 hrs & 25 people have viewed it… It helps so much when you can read what someone else is going through, because then you don’t feel so alone. :slight_smile:
My heart goes out to you, being so young & having to struggle & manage this, it sounds like you have been through so much. We simply have to stick together & being your own patient advocate is a must. Knowledge is power & the more you learn how to best manage fibro, the stronger you become ( emotionally) when I was first diagnosed I didn’t have a clue… & now a few years later I can say I know what to expect, how to balance my energy, and leave the guilt & worry out. Being apart of LWF has helped me so much !!! There is always something new someone has tried that has helped them. And while not everything works for everyone… It continues to provide hope that there are always new things that may help make tomorrow a better day !
Hang in there, I’m so glad you have joined us…

Hugs&
Blessings
dee

Hi Maradia. It's nice to have you here. What you have shared is similar to many of the stories I've read here. The letting go of our dreams is a very grievous process. It takes time. Chronic illness is difficult to accept, in any shape or form. It seems that fibro is especially difficult because it's not understood by us or by many in the medical community.

This LWF board is full of great advice! Dive in and read some of the other discussions and check out the groups. You will find commonality with most of us. Best of all you will get support! You will see that many of us have chosen different types of treatments. Different things work differently for us. It takes awhile to balance it all out.

It's so good to have you here!! You have so much to offer. Thank you for sharing your story with all of us. The research you do will be valuable to the rest of us, so please continue to share.

Hang in there, Maradia. We are here for you.

LKitty

DreamCatcher, you are so right. It does take courage to tell your story. Thank you for sharing yours and for your strength.

Hugs,

LKitty

Welcome Maradia! I hope you find the answers and support you need. Hang in there and know that you have lots of people here willing to guide you along your long journey.

Hugs,

Lori

Welcome Maradia,

I like you am at the point where I need to make a tough decision. I'm currently out of work on medical. I am older than you but I started a new career, as a teacher, a few years ago. I am also angry because I can't do the things I need to. Being in the classroom became so overwhelming that I became severely depressed. But, I am thankful that I found this site because it helps to know you are not alone. I'm here, friend me if you need someone to talk to.

Gentle Hugs,

Kerry