Or all of the above? The last few days since the “MS Hug” popped back into my life, I have just not felt well. I did get a sore throat but maybe I just slept with my mouth open or something? I don’t know but I checked the inside of my mouth/throat for all the stuff I had to start checking for after Lemtrada and all was good. But still, I just haven’t been feeling well. I feel really week, my skin is almost tender sometimes, and I have been so tired! Fatigued, lethargic, whatever you want to label it as. I don’t want to move. I don’t want to get out of bed. I don’t want to do anything. But I have so much that has to get done, stuff that has a time limit so I have had to push through all this and try to get it done. So maybe between the stress of all that I have to deal with and the stress of trying to push myself so hard I am just breaking down?
I wish I had the “luxury” of being able to rest when I feel I need it but thanks to greedy Uncle Sam I don’t. Right now I have to prepare my case for my Social Security hearing which would not be so difficult if I understood what I was actually trying to prove? That I am disabled? That I honestly believed that the fact that they started sending me money meant my SSI was approved? I have no idea. I plan to call them and request everything they have on me in my file so I can see what I am working with. What makes me mad is the only time I can remember every giving them any information about my health was when I first applied for SSI and I know this is a huge shocking secret in the world of MS but how I was yesterday (let alone 5 years ago) is not always the best indicator of how I am today because get this, MS changes over time! Crazy right? So they are probably basing all their decisions about whether or not I should have ever been granted SSI on how I was in 2012 and not how I have been over the last few years. But anyway, this is just one of the many things crammed on my tiny little plate that I am trying to deal with.
My stress level has never been so high and my perceived quality of life has never been so low. Yet everyday I have to drag myself out of bed and not only work on all this but stress about how I will make enough money for the month to pay my bills and save up the money needed to file for bankruptcy in case (in the likely case) that the government decides it wants over $26,000 from me, $26,000 they gave to me during my time of need, $26,000 that came out of the pile of money called Social Security that I had been paying into since I was 17. It was an insurance plan. I was paying into Social Security in case something happened to me and I needed help. If that were the case that money would be there. So this is sort of like your car insurance paying for a car wreck and then 5 years later saying, “hey wait, we should not have given you the service you paid for because… well… yeah… we found a discrepancy in your paperwork so score for us!”
I am tired. I am so tired and I don’t feel well. Getting out of bed, into the shower and brushing my teeth is enough to deplete most my energy and make me want to just climb back into bed. I feel like my body is telling me “this is too much” but I can’t stop. This has to be taken care of. “Life” does not care how I feel. LIFE goes on. MY world may feel like it has stopped but THE world spins on. Bills are still due. That being said, the best part is this; because I was diagnosed at such a young age I don’t think I have worked enough to ever be eligible for permanent disability? I mean how does that work? An 18-year-old gets into a car wreck and loses both his/her legs and they are never eligible for permanent disability but a 45-year-old guy twist his ankle at work one day and he automatically gets SSDI? No… I must be missing something, that just makes no sense.
All I am saying is I am tired, not just physically but mentally and emotionally. I am tired of all of this. Every day is a struggle to keep moving forward. One hour at a time until I can go to bed for the night and start the process over again the next day. I am destroying myself in order for the “privalidge” to “live” in this country. This system is so flawed but I just can’t get into all that because I just don’t feel well.