I know just how hard that decision making struggle is for you. I lost my job in January (my company went bankrupt). After 3 months of of sending out resumes, I got no calls, not even for an interview. It was extremely discouraging. When I was working, though, my bosses were extremely understanding and empathetic regarding my physical problems. I did have a sit down job but it still became very hard. And Iknow exactly what you mean when you say your work is ALL you can do..and no energy for anything else. I went to work in extreme pain every day and got through it somehow (I don't know how, though) because I'm also single and need to support myself. I would never get enough from Social Security, so that was never an option for me. But my employer, I think, was rare in working with me and understanding my limitations and constant doctor appointments, etc. One of my bosses had even made me call my Rheum one time ( i was crying from the pain), they told me to come in that day..and my boss was concerned if I could even drive, so she drove me to the doctor and waited for me. And even so, I still did a good job at work. I still gave it all my all. And llike you said, it became so exhausting (not to mention that many times I could not go out anywhere anyway b/c I couldn't reallly walk around)..so exhausting that I came home and usually fell asleep. I hardly ate because my appetite was lost from the pain. My bosses and even co-workers always asked if I needed help and some made me let them help me. I am very stubborn and I felt like I shouldnt be needing help, so I always tried to do whatever task it was. So my co-workers and dept. bosses were absolutely wonderful about it all. However, I know that is very hard to find.
Well, I went on unemployment and had some bad pain. The UE counselor kept asking what was wrong with my leg (as I limp). I do have severe ankle arthritis but my back was causing me the most grief. First I did not want to tell him that I was very limited in what I could do....because on UE, one is supposed to be physically able. But even that counselor was great...he actually brought me up to DVR (The Division of Vocational Rehabilitation) to see if they could help me. Every state has this division and I think they are more known for helping people on worker's comp. that got injured on teh job, but that is not all they are there for. This division exists to help anyone with a disability that might affect their employment. Anyone with a disability can just walk in off the street to request an appointment. One can have Carpal Tunnel and go to DVR on their own for job assistance. You do have to let them know what your medical conditions are and provide proof (IE: copies of your medical records, which you can get on your own or they can contact your doctors for them). The first thing my counselor asked me was if I wanted to update my skills or learn new skills, which I was interested in. So I received a state grant for job training at a vocational school that I pay nothing for. It's a free education and I also still get my unemployment. They work with you and employers to coordinate any special needs you might have to enable you to do your job. Like with me, I might need a special chair or more breaks, or who knows what else and DVR can help arrange that with an employer. They also have job leads, job counseling, resume help, and all sorts of things. And their requirements are way less than SSI. So you really should think of calling your county's Division of Vocational Rehabilitation to look into it.
I am personally still soooo worried about finding a job in my condition. I am in pain management and on several meds to control my pains quite a bit, though I do still get some pain. And what's worse is just this past Thursday, I had a sudden breakthrough flare of severe pain, which is causing me to hardly be able to walk. And wouldn't you know, that after this happened, I got a call from a job I applied for to set up an interview next week! And I also have an agency to see next week for skills and assessment testing. This was a fine time for me to get such a pain exaserbation! I called my PM Thursday to at least request a Medrol pack in hopes itmight calm down my nerve pains and maybe I can look semi-normal walking. There is no way I can go to an interview shuffling and hobbling in there with my cane the way I have to walk. We all know there would be no chance for my of getting that job. So I am suffering for the weekend and think I will start my Medrol either Monday or Tuesday so that the highest doses are taken when I go for my interview.
It is so not an option for me not to work. I am only 39 right now (though my spine problems started around age 33 & I've already had spine surgery) and sometimes I just think of the future and like..how am I going to live? Where will I live? I have no children either, so no one else that could help me. It can get very depressing, so I totally understand where you are coming from. But I so try to put that out of my mind.
If you work with DVR, they might have suggestions for you for things tthat might make working a bit easier on you. It's at least one other option to look into.
And I worry so much about if I will get hired. I am not always in extreme pain, but there is always some pain present. I walk with a limp and usually leaned a bit forward and to the right so it is obvious to others that something is wrong. But I will keep a positive attitude at any interviews and really try my hardest to express what a hard, dedicated worker I am. But still, if I do get hired, then have another bout of severe pain where I can hardly walk and I'm a new hire...what will they think???
I cannot stand for much length of time so any job on my feet is out of the question. I can only do a sit-down job, although, as you know, that hurts too. The best advice I can give you at this moment is to contact DVR and meet with a counselor to discuss your situation and work concerns.