Sick? Stressed? Pushing Myself too Hard?

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.

15 Responses to Sick? Stressed? Pushing Myself too Hard?

  1. julie lowndes says:

    I’m sending you a huge hug though I know that doesn’t solve anything. I will pray that the fatigue and stress lift enough to give you the strength to fight. We’re thinking of you and hoping for a very quick solution😘

  2. Dimitri says:

    I guess I should feel lucky that my MRIs were so bad that my permanent disability went through undisputed (but that’s in Canada).

    So how does social security work down there? Up here the clock starts running as soon as you put in your first application. I’ve heard of cases where disability wasn’t approved for years and then when it was approved they payed him a lot of back pay. I hope in the end this stress of yours will have a fair pay out.

    • Matt Allen G says:

      I honestly don’t think I actually know how it works. I was approved, given money for years, and then they said I owed every penny back. I don’t get it.

      • Dimitri says:

        Oh wow. I wasn’t aware of your situation. That’s ridiculous. It sounds like a technical error. I read an article awhile ago that said they changed the laws in the UK so that people with ms don’t have to keep proving their disability. I’m sure once they look at your situation they will see their error.

        I’ve learned that when dealing with the government you can’t take things too personally, because they don’t see us as people. All they see is a number. And governments are prone to making mistakes.

        Good luck with this.

  3. Porsche Fowlkes-Arthurs says:

    Hello Matt,
    Your post was very interesting to read. Although I don’t have MS, I have found myself extremely tired to the point where I too sometimes feel like I can not get out of bed. I have contributed this to stress, and the state of being over whelmed with life. Your right life keeps going despite the way I feel. Sometimes feel that people are so involved with their own problems to stop and care. But what I have found to help me is prayer, and meditation. I cant control what life throws at me however I can control the way I respond to it! Thank you for sharing a piece of your story.

  4. Casey Hill says:

    Hi Matt,

    Man! I definitely cannot even pretend to understand what it is like to be in your shoes. It must be so frustrating to feel so exhausted when the day has not even begun and to have others determining how much help you are worthy of! I grew up watching my mom suffer through the symptoms of RA while being a mail carrier. Many mornings she could barely get out of bed and other mornings she literally could not get out of bed. I watched as others judged her for having a handicap plaque for parking or a wheelchair for the days she couldn’t walk and them telling her that there was nothing wrong with her, she was just abusing the system. Now, as she is 8 years from full retirement, she is struggling day to day and has been trying to get government assistance due to her medical issues for the past 3 years. They are giving her the run-around constantly and doing everything they can to deny her assistance. As you said, the system is terribly flawed and something needs to be done to fix it. Thank you for sharing your story for others to relate to and communicate with you. I hope everything works out for your case and that you have bright days ahead.

  5. Marleen Juarez says:

    Hi Matt,
    Although I do not have MS and can’t even begin to comprehend the struggle it can be for you to get through the day, I found your post to be very true and open. I agree, life does not care about one and it will go on with or without one. Like you, there are some days where starting the day just feels overwhelming and a task in itself. Things need to get done and there never seems to be enough time. Well, at least time for the things we actually want to do. When things begin to get too hectic, to prevent myself from having a mini breakdown, I’m trying to change my mindset. Because I can’t predict or control what’s coming ahead, I have to just try to roll with the punches. Although it can be frustrating, sometimes I just have to let things be. With regards to your case, all I can hope for is that it goes well. I find it disappointing how the system can be so unkind to those who need it the most.

  6. Yasaman Danesh-Panahi says:

    Dear Matt,

    I cannot pretend to understand what you are going through as I do not have MS. You are right, life goes on no matter what you are going through and you still have to get up and get the job done. I want you to know that you have every right to feel how you are feeling. Always continue to process and express your feelings, as it will allow you to see everything for what it is and therefore move forward. I am sending positive thoughts and prayers your way and hope that the system does not fail you!

  7. Tanya Ruangtragool says:

    Hey Matt,

    I’m so sorry this is all happening to you. As the above post, I cannot pretend to understand how you are feeling. The fact that someone who really needs the care has to fight for it is very irritating, so I am not surprised that you are not only physically tired but also mentally and emotionally. No one should have to “prove” that they have MS and need care for it. It’s okay to be sad, however, you cannot let that take over you. As you said, life does go on. Not only life but the fight. The fight for justice and care. You could be the shining light to yourself and many others who believe in you. Never stop fighting because you’ll never know who you could be fighting for.

  8. Sara Z says:

    Hi Matt,

    I’m horrified by the story you shared in this post. I’m not well-versed in the way SSI works, but no one deserves that kind of treatment or stress in their lives! I’m studying occupational therapy, and your post motivates me to learn more about the social security system and how I can help educate my future clients about services they may be entitled to. My goal is to always be an advocate for my clients. I really appreciate you sharing your story because it’s helping spread awareness to others. I wish you the best during this difficult time, and I’m sending you positive thoughts from CA!

  9. Christine Cook says:

    Dear Matt,

    I cannot even begin to imagine how you are feeling. Thank you for expressing your feelings, as they help those who do not have MS, gain some perspective about your situation. Your post helps to educate others about the flaws of the system. I encourage you to continue advocating for yourself and others with MS by sharing your story. While it may be difficult to express feelings, please know that your words are appreciated and help create awareness. I am keeping you in my thoughts and prayers.

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