I feel like my life is falling apart because of my fibro. I spent two years becoming a law clerk, and my biggest fear is that I wont be able to do the job now. although my partner works, there is no benefits and were have barely enough to pay our bills. so needless to say I cant afford to get my prescriptions, and the long I go without the worst I feel and I am getting. I wake up everyday in pain, but I push through and take what pills I do have. I try accomplishing whatever I can in a day even if it is just making it to the couch. Although those day are becoming few and fare, and most day I don't want to get up. I can see it having an impact on my family and I don't know how to stop it.
I have a hearing on Nov 20, but I don't have a lot of confidence in them because I partly blame them for how I am feeling now. They already gave my disability just to take it away because my doctor at the time did not specify pain on my application, he just put Fibromyalgia. But when they were helping me I was able to do and get anything I needed to get my self on my feet and make the down days further and further apart making so I felt like there was hope I could work again. Half way into my school they took it away for the reason I have stated above and since then I have been just going down hill.
I feel humiliated that I have to beg for help from a program that says there are here to help people like me. All my determination and fight seems to be fading away. I feel useless! it feels like there is a war going on it my body. Disability says that I am not disable, so my mind keep saying push your, but my body like an alarm clock keep sending pain through me reminding me that I cant do anything I want to. I look at job post, applying to anything that my illness might allow me to do, but still looking at other wishing that my life was like before the fibro, wanting to just apply to anything, so I could have the second income in this house so we can afford to live, and so I could feel better about myself.
But then a storm sets in, and as I hug my bed and my body forces me to sleep to escape the pain, I am reminded that my fibro flare ups are just as predicable as the weather is, and the fear of how to maintain a job kicks in. My feeling of self worth decreases and I am feeling like wasted space.
Although on a good day I feel hope, my problem is that the feeling of hope is become few in between and I feel like I am losing my mind.
First, I would like to say your post was very powerful. I am sorry for what you are going through at this time. I can feel the struggle and pain in your words. Have you tried checking prescription websites to see if they offer any assistance for the underinsured or uninsured? I found that helpful when I was uninsured for a period of time.
I know how sleep can be compelling to escape the pain. What has worked for you to help with the pain? Is there any specific remedy that helps (like hot baths? sleep? stretching? Tylenol?)
I have been where you are at with the hopelessness and feeling like I am letting my family down. I don't have any kids, but I have a loving, devoted husband. Even though I felt like I was letting him down, when I talked to him about how I was feeling, he never felt that way. Have you thought about counseling to help you cope with feeling down and hopeless? I found it helpful to speak with someone who wasn't part of my family or friends who could look at my situation with empathy and be objective. I was in literal hell for one month with a flare up and I wanted to scream/cry all the time. I am finally out of that flare (who knows for how long) but I hope your flare does subside for you so you can feel what it is like to feel "normal" again, whatever normal is for us. Our normal may not be perfect, but I'll take it any day over a flare.
As far as the Disability goes, I have no experience in that area, but I am sorry a small technicality on a piece of paperwork messed everything up. I hope it gets straightened out quickly and goes how you want it to.
I'm sending good thoughts your way and wishes for wellness. I'm here if you want to talk.
Thank you for your reply and positive thought. It means the world to me.
I have not gone on the websites to see about help with covering my medications but that is a great idea that I will definitely pursue. Although I am trying to apply for the provincial benefits.
As for counseling, I just met with someone today and we met again next week. She has given me some tactics to use and told me to stop looking ahead and only look at what’s in front of me. And to celebrate my accomplishments, even if it’s just making it out of bed. She finished by agreeing with me that find a support group would help me because it would help help with the feeling of being alone.
Which brings me to my spouse and children. There are great and frankly the reason I keep pushing myself and yes your right not feeling like I can take care of them the way I feel I should be is a killer to me. But I can honestly say there are supportive, especially my spouse. I can talk to him about anything and he tries to help as much as he can but sometimes as much as he tries he doesn’t understand my frustrations. He just wants to fix it, and well sometimes it can’t be fix like the rain storms that take me out. So having someone to talk to that knows my pain and frustration is very much needed right now. So know that your here to talk to is very much appreciated.
As for Disability, I hope there see their error and realize I need help. I really don’t want to give up on my dream of working ad a law clerk and maybe one day become a judge. I would gladly take the pain with grace providing I knew I would still be able to accomplish my dreams. I would be happy to consider that my normal.
I understand what you are saying about wanting to pursue your dreams. During my last flare, I missed several days of work and had to leave early to go to medical appointments. I am a social worker and I love it with all my heart. I don't know what I would do if I couldn't work anymore. Social work is part of me and what defines me. I push through the pain daily, but work provides a nice distraction and I feel like, "I didn't go to school to get my Master's Degree to not work!" That is what my internal mantra keeps saying to me lol I try not to be that hard on myself though when I'm experiencing a flare because I know a flare can really knock me down and make me feel like I can't work. Even though the days are hard and long, I push through it because I love working. I think your dream of becoming a judge is great and I hope you can fulfill that dream! : )
Dee, I am sorry you’re going through difficult time. It’s important to remember Fibro has peaks and valleys and to try to maintain positivity. I can understand feeling downhearted, but considering you’ve come this far, you’re no waste of space, you’re a fighter. Congratulations on completing law clerk education. That is some accomplishment!
Thank you Sara and Laurie. Today is a better day and though things are still crazy, I feel a new sense about things. Knowing I am not alone and knowing there are others out there with the same drive I have. Means so much right now.
I am just not ready to give up, and yes thank you I have accomplished a lot, but I was really feeling like no matter what I do I was being pushed down. So I have taken my counselors advise and I am not looking passed Nov 20th and I am just pray that things go in my favor.
The last four weeks I have been in a heightened period of pain. There have been times when my legs & ankles give out & I feel like I’m going to fall. Anyone experience this with legs or arms? I just tried a Halcyon Float, floating in a tank of Epson Salt. It is not for me but it might work for you. Hang in there everybody.
Dee,
My life has been in a free fall since this past May when I lost my job. I worked hard to go to college and become an RN, and now look at me. I could have wrote what you wrote because I feel the same way. I have had days where I get discouraged and want to check out, but in those times I think about my family. I just wish I could be like I was before. I feel that I’m not living, only existing. I am waiting to see if I get approved for permanent disability. I could really use some good news since I’m tired of getting nowhere fast lately. I don’t have any answers for you, but at least you know that you aren’t alone. When is the media going to pay attention to FM and CFS? We need solutions and a cure.
Marty,
Yes I have had lose days where my arms and legs cave from underneath me. All I do is put them up and wrap in heat.
Connie,
Thank you for responding. That is exactly how I feel. My family is my world and for the past month I have been utilizing them more and more to keep going. I have my hearing on the 20th to see if they will approve my disability cause like you it would really help right now. But until then, I am only focusing on my daily goal and celebrating the success of what I accomplished in that day. And yes It would be nice to have a cure. I would love to not feel the pain every day but until then I am just gonna push on. So keep your chin up and I’m gonna do the same. I’m here if you need someone to talk to.
Hugs : )
