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Finding a safe place to land....
I was always an annoyingly positive person, with multiple, fun interests, a satisfying career, a loving family, and few money problems. Now, after years of Fibro/CFS, I still have a loving family, though they are tired (I think) of hearing about my pain, fatigue, etc. I try not to mention it to them; they try to understand, but they really can't.
Most of my interests/hobbies are no longer possible to pursue, and I can't figure out any new ones to distract me. My housework is always behind; I get too tired to finish any one room.
I have so many financial problems that I'm scared much of the time. I applied for SSDI over 15 months ago when I couldn't finish even one day's work responsibilities. I tried working 3 days straight and was in bed for four days straight. My administrative hearing isn't even set yet. I have no idea how I will avoid homelessness.
I try to hold on to my positive attitude, but I'm tired. And can't seem to find the light at the end of the tunnel. My ex-husband got a divorce: said he wasn't going to support someone who "wouldn't work." I said good riddance, but inside it made even more frightened of the future. My faith holds me together, but it doesn't pay the bills.
I am almost 61, and just plain scared of how I will survive. Oh, I forgot to mention that I have a wonderful 38 year old disabled son who lives with me. He has mental illness, but is a lifesaver when I fall, or can't get up, or need to do something demanding.
Sorry to whine, but I just don't know what to do. I have much to be grateful for, but things seem to be drifting down hill and I have no way to stop it. I hope this isn't too much of a downer post.
How do others keep a positive attitude?
Most of my interests/hobbies are no longer possible to pursue, and I can't figure out any new ones to distract me. My housework is always behind; I get too tired to finish any one room.
I have so many financial problems that I'm scared much of the time. I applied for SSDI over 15 months ago when I couldn't finish even one day's work responsibilities. I tried working 3 days straight and was in bed for four days straight. My administrative hearing isn't even set yet. I have no idea how I will avoid homelessness.
I try to hold on to my positive attitude, but I'm tired. And can't seem to find the light at the end of the tunnel. My ex-husband got a divorce: said he wasn't going to support someone who "wouldn't work." I said good riddance, but inside it made even more frightened of the future. My faith holds me together, but it doesn't pay the bills.
I am almost 61, and just plain scared of how I will survive. Oh, I forgot to mention that I have a wonderful 38 year old disabled son who lives with me. He has mental illness, but is a lifesaver when I fall, or can't get up, or need to do something demanding.
Sorry to whine, but I just don't know what to do. I have much to be grateful for, but things seem to be drifting down hill and I have no way to stop it. I hope this isn't too much of a downer post.
How do others keep a positive attitude?
I so deeply appreciate your affirmation of the fact that it is OK to whine. I've tried all my life to "go with the good." And not even mention troubles I might have. I guess that it is no longer the best course: as Dr. Phil would say, "How's that working for you?" This feels like a safe place to mention the whole picture, not just the good parts.
My granddaughters spent the weekend with me; they are 13 and 7 and oh, so sweet. I took them to church this morning. They live only an hour away, so for the first time in 10 years I get to see them very often. It is always uplifting to have their visits....even with the extra work. I love them so.
Even though I don't know you all personally, I feel you understand. It is a blessing to me to have found this site.
Take care
My granddaughters spent the weekend with me; they are 13 and 7 and oh, so sweet. I took them to church this morning. They live only an hour away, so for the first time in 10 years I get to see them very often. It is always uplifting to have their visits....even with the extra work. I love them so.
Even though I don't know you all personally, I feel you understand. It is a blessing to me to have found this site.
Take care
Thanks for the link to your website. I did find a doctor in my area (I live about 40 miles away from Cleveland, OH) but it looks like they are a FFC establishment. It appears that my first visit may be costly ($390). I have slowly withdrawn all of my retirement savings to keep afloat since my disability company (Unum Provident) decided that I was "all better" and able to go back to work this past July. I was stunned! I have an attorney fighting to get my disability reinstated. The case was opened in October after my appeal to Unum Provident was denied. It will take 6 months or more to get a decision in the case.
Okay, I am done whining now. Just had to share my current situation. It could be worse. I could be homeless and living under a bridge somewhere, huh?
My friends and family have been wonderful, helpful and supportive during this discouraging time in my life. I could not have made it this far without them.
Okay, I am done whining now. Just had to share my current situation. It could be worse. I could be homeless and living under a bridge somewhere, huh?
My friends and family have been wonderful, helpful and supportive during this discouraging time in my life. I could not have made it this far without them.
I am so glad my suggest about the congressman was helpful! Good for you. Hope you are feeling as good a can be. I ran 3 errands today, and am wiped out. Only other thing else I'm doing is goint to fix dinner for my son after work. Does the cold weather affect you> Makes me miserable, leading to higher heat bills. Your utilities should have some type of assistance program to help with the bills. I know it's hard to ask for help, but that is what it is there for. I am 60yrs old and a widow, so I know how worrisome it can be. A wonderful friend sent me a teardrop pendant that reads "Heavan has in store what tho has lost" It brings me great comfort. And by the way, NOT whining is highly over-rated! Whining helps! Prayers
I am sorry to hear about the way things are going for you right now! i am new to this forum and boy do i relate to you! iam 47 been off work since oct my 12 wk med leave about to run out. i couldn't do it anymore - make it through the work week end up taking days off during week and in bed whole weekend to go again on monday. i worried constantly how each day would go, it has helped in that area not stressing and working but still so hard. i too was single mother of 4 working by butt off all these years and i tell my daughters the same take some time - i never did. always felt guilty and now i feel useless for the person i am. been dx about year now and still frustrated with the why and ?'s. can't believe something can be so painful, life altering and find some people just think i am just whining nothing wrong few aches and pains. you know i too prob would be doubtful to fms just hard to believe, just not the same person i was. anyway i am just rambling on but i hope things cheer up for you, i hate when people at work kept asking will you be better in couple of days, why are you off work? they seen what i was going through i struggled to make it ! feel free to email me thanks for listening
rhyannon:
One of the prescriptions that I'm taking is very expensive and my COBRA benefits also ran out, so I was in a pinch. My physician gave me a list of pharmacies in Canada. It was so simple... my physician faxed his order to Canada and I received my medication the next week ! I ordered a 5 month supply of medication and it saved me hundreds of dollars.
susieQ1960,
I'm sorry to hear that you don't have a specific diagnosis yet. I post the latest research, treatments and physicians (experts in CFS/fibro) on my website. Here's the link if you want to check it out:
http://groups.msn.com/Neuro-ImmuneSupport
I am finding my sense of humor again, after writing my first post, and seeing that so many of you understand. I have to turn this isolationism around. And, I have to stay out of denial. I was raised with an attitude of "sick or ill, get out of bed and get going." I believe with every fiber of my being, that doing far too much and not listening to my own sense of fatigue 30 years ago, is a factor in my present health problems. I have 4 children, 2 of whom are like me: they are working 60-80 hours a week, playing hard, and not attending to their own need for R&R. I have warned them about the possible heredity aspect and asked them to learn to relax and rejuvenate often NOW. I have my littlest granddaughter overnight, and that is always a joyful blessing.
I just finished the paperwork to send to Pfizer so that I can get my Lyrica. I had to pay for it as my insurance ran out: $193 for one month. Luckily, my son helped me pay for it: an early birthday gift ! I am surrounded by loving family, and I don't want to lose a minute of feeling my love for them, and their love for me. That is a much better focus than how I feel.
Thank you to everyone.
I just finished the paperwork to send to Pfizer so that I can get my Lyrica. I had to pay for it as my insurance ran out: $193 for one month. Luckily, my son helped me pay for it: an early birthday gift ! I am surrounded by loving family, and I don't want to lose a minute of feeling my love for them, and their love for me. That is a much better focus than how I feel.
Thank you to everyone.
I know exactly the place you are in and it can be very frustrating. I allow myself some down time emotional but pick myself up and dust off the self pity and try to focus on something positive. Easier said than done.
Don't give up on SSD. I think they purposely make it trying and difficult to weed out free loaders. The advice to get an atty and to contact Senators and/or Congressmen is wise.
Prior to July 2005, I worked a full time job, a part time job, took 6 credit hours of college courses a semester and worked out at the gym 3 times a week.
I have not worked since July 2005 and had to put my college studies on hold. Forget the gym.
I have had the same severe headache since May 2005 24/7. I experience seizures and am tired all the time. I also have a lot of other issues such as sleep apnea, allergies, chronic constipation, difficulty swallowing, muscle weakness in the legs, balance problems, intolerance to heat, eyelid malfunctions, blurry vision, chronic EBV infections, etc.
I have done the circuit of doctors, Cleveland Clinic and an array of other specialists. I have been told I do not have MS, epilepsy or lupus but no doctor has given me a clear diagnosis.
We all need to vent at some point otherwise we would explode with frustration, no?
"Be strong and of good courage ...."
Don't give up on SSD. I think they purposely make it trying and difficult to weed out free loaders. The advice to get an atty and to contact Senators and/or Congressmen is wise.
Prior to July 2005, I worked a full time job, a part time job, took 6 credit hours of college courses a semester and worked out at the gym 3 times a week.
I have not worked since July 2005 and had to put my college studies on hold. Forget the gym.
I have had the same severe headache since May 2005 24/7. I experience seizures and am tired all the time. I also have a lot of other issues such as sleep apnea, allergies, chronic constipation, difficulty swallowing, muscle weakness in the legs, balance problems, intolerance to heat, eyelid malfunctions, blurry vision, chronic EBV infections, etc.
I have done the circuit of doctors, Cleveland Clinic and an array of other specialists. I have been told I do not have MS, epilepsy or lupus but no doctor has given me a clear diagnosis.
We all need to vent at some point otherwise we would explode with frustration, no?
"Be strong and of good courage ...."
Hi rhyannon,
I take one day at a time. I'm also a positive person and fortunately, depression hasn't hit me.... not yet anyway. But the frustrations with having this poorly misunderstood illness can be overwhelming at times and I wouldn't wish this on anyone.
About your hearing...I would consider contacting your Senators and/or Congressmen and see if any of them can help expedite your hearing date. And I would also get an attorney.
I'm 29 year old male and I've had CFS for three years - One of the hardest parts of this illness is the frustration, depression, fear and the anxiety that goes with it.
I've had two good girlfriends who have understood but some of my friends are very skeptical and have little paitence.
Whilst I think I'll never stop being angry about those who refuse to learn about it before dismissing these auto immune type of illnesses, I have found great comfort in self help books, postitive thinking and trying to not allow my illness to rule my life.
I went from a gym addicted, frequent drinking, socalite to a teetotal, inactive hermit, despite my best efforts to battle against it. It takes masses of strength to feel like these illnesses aren't consuming your life but all I can say is the only solution is positivity and everythign that comes with it (be it meditation, reading, personal goals etc). I know it all sounds a bit touchy feely, but until they research these illnesses intensively, the only thing that can change is personal perspective!
I've had two good girlfriends who have understood but some of my friends are very skeptical and have little paitence.
Whilst I think I'll never stop being angry about those who refuse to learn about it before dismissing these auto immune type of illnesses, I have found great comfort in self help books, postitive thinking and trying to not allow my illness to rule my life.
I went from a gym addicted, frequent drinking, socalite to a teetotal, inactive hermit, despite my best efforts to battle against it. It takes masses of strength to feel like these illnesses aren't consuming your life but all I can say is the only solution is positivity and everythign that comes with it (be it meditation, reading, personal goals etc). I know it all sounds a bit touchy feely, but until they research these illnesses intensively, the only thing that can change is personal perspective!
I did contact Senator Rockefeller's office just last Friday. They said they would help me and for me to write a letter and enclose shutoff notices for my utilities and they would try to get the hearing moved up. I am being represented by ALLSUP, a company that only does SSDI stuff. They have been wonderful and are trying to get me a hearing sooner under something like "dire circumstances." Thanks for the idea of contacting my local office; I never thought of that. Take care
Thanks for your prayers. I am on meds (Lyrica/Cymbalta/Flexeril) and without them, I probably be bed-ridden. It feels better to vent; it doesn't really change the situation, but it does get it off my chest and that's a good thing, Take care
Rhyannon.....why would you think you are whining? We are all on this forum for the same reason, support. That's why we are all here. We are suppost to help each other with suggestions to help with SSDI, pain, doctors and to just plain be a friend an supporter, anytime of the day or night. Whine away.
Have you contacted your local ss office? They should be able to help you get your disability hearing sooner. If not, contact your state represantative's office. They are usually willing to help, and can get things moving faster for you.
Keep the faith, follow your faith to its fullest, and with everything going on try to seek out some mental health aid. Medications and therapy may even help! Your in my thoughts and prayers.
Thanks for your supportive post. As I reread what I posted last night, it became pretty clear to me that much of what I was whining about was out of my control. Guess I'll step back and recall the Serenity prayer. I have my granddaughters this weekend; they are 12 and 7 and sweeties of the nicest kind. I am going to wait until they leave to spend much time on the 'puter. I slept some last night, and just want to enjoy my "babies" Thanks again and I'll be back on, later on Sunday.
I wrote that post last night, and as I read it anew this morning, it was obvious that my situation is genuinely frightening. It just will take deeper searching for the parts to be grateful for, and deeper digging into my faith AND...less isolation. Reading your posts made me feel less alone! Thank you! Oh, I live in northern West Virginia about an hour SW of Pittsburgh. It is one of the last truly affordable places to live. I'll email later today. Thanks again,
I don't feel like you are whining. I am feeling the same way as of late. In the past few days my pain has increase considerably and I am som stiff right now, I can hardly get up and down my stairs.
I am however very lucky to have a husband who is understanding of my pain, however I have given up whining about it, as he is having some of his own medical problems. I will looking for your posts to see how you are doing.
Take care of yourself and keep your chin up
I am however very lucky to have a husband who is understanding of my pain, however I have given up whining about it, as he is having some of his own medical problems. I will looking for your posts to see how you are doing.
Take care of yourself and keep your chin up
hello, i am 44 years old and cannot tell you how much your life sounds like mine.. the pain is horrible and dont give up on ssdi.. you can email me
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