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Lyndsey

Active member
Joined
Dec 18, 2014
Messages
89
Reason
DX FIBRO
Diagnosis
04/2014
Country
CA
State
British Columbia
Hi everyone...this is my second post on a similar subject but wasn't sure if I should continue with the same thread or start a new one...

I was approved for disability about 2 months ago, and have been off work from my fibro/CFS for the past 8 months. It took me a very long time to make the decision to stop work, I was stubborn for a long time out of fear of what people would think of me. I am feeling extremely stressed about it for a number of reasons. I am in a position that i never in my entire life thought that I would ever be in. Being of work is always making me worry what people think, as with this illness it is invisible to the people around me and no one actually understands the amount of pain I am in on a daily basis and just how much of a struggle it actually is.

The disability people contact me frequently and ask routine questions. This stresses me out and I think makes me in turn feel worse. I am scared of so many things, like will they suddenly cut me off and force me back to work? can I go out and do things on days when I am feeling ok and can actually do something enjoyable other than sit inside on my couch in pain?

I am scared of what they would think or do. Again I will reiterate I am not a lazy person, and have always pushed through my days, and faked how I feel, put on a smile and grin and bear it. I just dont think I could go back to work right now if anything happened with the disability because of how bad it is, and I am scared to death for financial reasons if that were the case. My husband doesn't make enough money to support both of us right now, and I make a good living with my current career.

I have tried so many things for my fibro in the last two years, and nothing has helped yet. It feels like it is just getting worse.

Anyone else in a similar situation or advice on what I should do or think...

thanks,

Lyndsey
 
Lyndsey,
I understand your fear and apprehension. Because you live in B.C. I cannot advise you on disability payments. What I do know is that fear can destroy you. I think it is important that you get out of the house. You need to establish/maintain some social contacts. Avoid negative people. Find a physical activity that you can do. One poster walks his dog twice daily. I ride a bike 3 times weekly. It makes me feel normal and being in nature on the trail lifts my spirits. Make sure you time your medication and any exercises to give you maximum pain control for your chosen activity. You may have to make some changes in lifestyle to stretch your income unless your husband is willing to change jobs or get a second job. Lastly, counseling could be very helpful to deal with your anxiety.

Donna
 
Lyndsey I'm right here with you! I too am on full disability, again. I was working for low pay in a data entry job for almost 3 years but after a promotion type if hire, I was let go 6 months later. I know it was because I was slow, and I was trying to stay working by going to a pain management doctor, but with all the doctor appointments and medications I guess I couldn't "hang". I sure did try. I felt like I was working my booty off! But a fee tardies also added up after we moved further away from my worksite, and well, they said I was fired due to "involuntary performance". Well, having a injured left arm and hand and a previous (year 2003) work comp injury of overuse to my right hand, arm and neck.., that qualified me to go back on disability. A pay cut for sure, but at least I won't have to pay taxes on it like I would unemployment benefits. (Heh, trying to look on the bright side). Not working IS stressful at times. I, too, worry about what people may think. I have a visable disability yes, my left hand is paralyzed... But if you knew me you'd know I try not to let it hold me back... But the chronic pain I have is invisible just like yours. I can relate. Definitely try to do stress reduction or try some relaxation meditations on CD or even YouTube or a phone app. That has helped me to de-stress a bit. Try not to worry. You have every right to go out of your house and take a walk or a short hike to increase your endorphins. :). I know what you are going through Lyndsey! Try to relax and you know, it doesn't matter what others think. WE know our pain. God (or the Universe) knows our pain. I'm here for you whenever you want to talk about it more!
 
thank you both for your responses :) and I am really sorry to hear your dealing with the same things.... Its so nice to know that I have people to talk to, and I am also here to listen anytime for you! I do need to get out more and excersice, before I went off work I was working out a lot more I definitely feel the difference. I know that worrying needlessly about what other people think is only doing me more harm than good. For instance, my husband bought me the most wonderful xmas present to meet my favorite band. I went to it and was very happy to even though I felt like crap! But then spent the entire day worrying that I should't be out enjoying myself. As you guys know good days are few and far between so taking advantage of those days are a must. I have been seeing a counselor for the anxiety which does help a bit. For me the pain and chronic headaches are so bad I can only feel good when I am taking my pain meds, so that can be frustrating!

Thanks again for all the advice and hope to chat again soon with both of you :) xoxo

Lyndsey
 
I am trying to get disability. In NY state they make it almost impossible. I haven't been able to work as a nurse in hospital since 2012! I want to wrk but I have other issues on top of he fibro.

I am left feeling hopeless most days because I can not do anything without it causing pain or extreme lethargy.

I am older so I guess I don't feel as bad about not working more then not being able to live period
 
Hello Lyndsey. I am not on disability but haven't worked since 2012. I left my highly stressful job to go back to school when the symptoms I had been experiencing for years led me to a rheumatologist for a diagnosis in 2013. I live in a state in the US with a notoriously low disability approval rate and just don't have the strength to fight for it. I understand your fear, but try not to let it take over your life if you can. See if there are any local fibro support groups to join, it might help you to have someone to talk to about your concerns. God bless and take care.
 
Hello Lyndsey, I understand all of the disappointments spoken of here. The not being able to work and the way people can treat you when they can not see the disability that robbed you of the ability to work. My family thinks I am lazy and should get a job. They do not believe that I am in pain and have other issues like brain fog that keeps me from a lot of jobs I would like to have. It is very discouraging and demeaning.

There are jobs you can get where you can work from home, either writing on blogs or taking orders for companies, or setting up reservations. Please go and read my blog #7, which will give you some ideas to get started with. Other things you might do on the side is offer to help your elderly neighbors get to the grocery store or offer to get their food for them for a small fee. Sell any collage books or other books, music or game, or movie dvd's you don't want anymore online. Do surveys and get paid. If you search for the place I mention in my blog it will get you started in finding some work you can do from home.

As for the disability people calling you, that is just to get you set up with your SSD money and get all squared away. They may mention the ticket to work program but that is not something you have to do, only if you want to, otherwise put it away for now. As for the other feelings your having you might want to consider talking with a therapist. I spend many months speaking with one to be able to manage the thought of not working. It broke my heart to give up my housecleaning business and also all my friends who lost contact with me when I was unable to work.

I hope some of this helps some of you feel better and feel safe to leave your house and enjoy some parts of your life and do things your still able to do. Any questions send me a message. :)
 
Hi everyone and thanks so much for all the advice and comforting words. I am so sorry for everyone that is struggling and feeling down about health and current situations. Atleast we are all here for eachother which to me is very comforting. I have heard it is more difficult to get disability in the US than Canada and I think that is really crappy! If people understood how we feel I don't think it would be as difficult. For those of you trying for it keep pushing don't give up.... My thoughts and prayers are with everyone. I am sure I will post on this again lol

xo Lyndsey
 
Hey Lyndsey

Having them call you all the time is just their job, treat it like that, think of it like routine questions. Write them down and your response, when they call back pull this out, use the same reply. This will help trigger the memory that they are just doing their job - it is not personel. By using the same answers you are not giving them news they can use against you. As long as you know that you deserve disability you should not feel guilty and so you can stay calm take your breathing exercises after and avoid the stress that triggers that are killing us slowly.
 
Thanks Lainee,

I know you are right! My whole life I have always felt bad for things that I shouldn't, guess it is unfortunately in my nature! I will do that and hopefully it will lessen the stress I feel. You are bang on about the stress, it is killing us slowly !

Hope you are well :)

Lyndsey
 
Hi Lyndsey! How are you tonight? I agree with the last person who wrote and told you to not feel guilty! And they had fantastic advice about the questions with answers written down! Keep a journal or start one. I'm going to! Really. Two reasons, 1) we can write down lists of say, things we seem unable to do or maybe you recently found you were having more trouble with something. Anything from walking long periods to keeping your checkbook balanced due to depression etc... Things you can tell disability if needed (a list to keep nearby). But also 2) we are definitely dealing with stress. And I too, tend to feel guilty for all sorts of things. I'm going to carve time out either day or night even just 5 minutes each day to write and vent my feelings. I think it will help me explore what I want, what I'm afraid of, etc. I haven't read one of his books yet, but have you heard of Dr Sarno? Has anyone read about his philosophies regarding our emotions and our physical pain? Hang in there Lyndsey, I'm going through all of this right along with you! Take a hot bath or shower and make your honey give you a run on your sore spots. Xoxo!
 
I am always feeling judge by others. Thats why I have socially anxiety. The feeling of people misreading me is horrible. I couldnt tell you how many times I have felt that with just my doctors. I try and go by but I have some really bad days. Like today. But it nice to know someone is there for me. I have been trying to get disability since september 2014. I recently had to try and get an appeal. So far it has been the worst. The amount of stress I am going through from it is horrible and yet I havn't even talked to a lawyer yet. I think the constant questions of how I feel on a daily basis is wearing me down. I don't know how many times I have answered that question. It is the worst when people say "well you look fine to me". I have to get an approval from my Doctor on Tuesday to send to my soon to be lawyer. I hope it goes better this time. And that about the phone actually sounds like a good idea. ty for the tip. Lynsey I have to agree with everyone else. Their job is to call and talk to you. Not just that but it is their job to see if your going to make a mistake. My sister had to go through ssi. They called her and a few times they actually showed up at her house. Not to scare you but It can happen
 
thanks again everyone for the comforting posts. I will be there for you guys when you need it too! I will take the advice and write everything down that will be helpful in reducing stress I hope! I very much understand the social anxiety thing. It is very hard and always worrying about being judged. If only they all actually felt our pain lol.

Stay strong everyone.

Thanks again xo.

Lyndsey
 
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