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Frightened

Posted , 9 users are following.

Ravenwood
Ravenwood

Hey guys, things have gotten pretty bad here at my house. On Friday, I woke up in so much pain and exhaustion that I couldn't even work from home. I ended up sleeping for 18 hours. Saturday was a little better, but Sunday, I was in serious pain and was very exhausted. On a scale of 1 to 10, my pain was at an eight or nine with medication. And on a scale of 1 to 10 my exhaustion level was at a 16. On Monday, when I woke up, I couldn't move. My husband wanted to take me to hospital, but I told him it wasn't necessary. I didn't think it was a medical emergency. The problem was was that I was in too much pain to convince my body to move. I would try to tell my arm to move and another part of my brain wouldn't let it happen. It was scary. So my husband gave me some pain meds, and in a couple of hours I could move. I slept for another 18 hours. On Tuesday, I still hurt and was still exhausted. I slept for another 18 hours. And today being Wednesday, so far I have slept for 12 hours but it is only noon. I am really frightened that I am getting worse. It seems that my ability to do my job, do chores around the house, take care of myself, etcetera is decreasing every few months. I don't know what to do. I'm going to go see the doctor tomorrow, but I know that he will just shrug and not have any idea how to help. I am frightened that I won't be able to work and I will lose my job. I'm not sure how we're going to make it if I end up sicker, and I don't provide money to our household. I know I'm worrying about the what ifs, but the what ifs seem to be looming large, suddenly. I could use any support you guys can give.

1 like, 95 replies

95 Replies

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  • jackie00198
    jackie00198 Ravenwood

    Posted

    Hi, Ravenwood. So sorry you're going through this. I noticed in your post that you mentioned doing chores around the house and also working. I know this may be hard for you to do, but I would advise you to cut back on both of these activities. Really, the best thing would be for you to stop working and doing chores for a while. I understand the financial consideration. So many people have posted who are in your situation, between a rock and a hard place. But if you push yourself too hard, you may not be physically able to anything for a long time. At that point, you won't have a choice. Your body will make the choice for you. This is what happened to me. I wish someone had told me what I'm telling you now. Could your family help pick up the slack, helping with chores and money issues? If you are in the UK, can you get financial help from some government entity? I find that usually when I'm scared, it's out of fear of what might happen. So I try, to the extent possible, to stay focused on the present moment. And I do know how difficult that can be when you're flooded with new, severe symptoms. Best of luck to you. Keep us posted on how you're doing.
    • Ravenwood
      Ravenwood jackie00198

      Posted

      Hi, Jackie. No, I live in the United States. If I go on disability, it will take a minimum of two years until I get approved. I can't imagine how I'm supposed to live for 2 years without any income. It's crazy. Today is Thursday, and I do feel a bit better. I only slept 14 hours. Yay! My pain levels are down as well. However, I still feel much worse then I did even a couple of weeks ago. I am hoping that by taking the rest of this week off, I might be able to go back to work on Monday. If I can't, I don't know what I will do. Thanks for your concern.
    • jackie00198
      jackie00198 Ravenwood

      Posted

      Just wanted you to know, when I worked, I went on disability (I think it was state disability, here in California) for 6 months, that was effectively immediately. After 6 months, I applied for Social Security disability. This was a while ago, but I know it didn't take 2 years. They initially rejected my application, which I was told they frequently do. I and my doctor sent a letter of appeal, and I was accepted. This maybe took a few months.
    • Beverley_01
      Beverley_01 Ravenwood

      Posted

      Hi Ravenwood,

      Am glad you're feeling a bit better today and hopefully that, as you say, taking the rest of the week off helps. Sorry to hear it is such a long process if you become unable to work to get any financial support in America. I hope that it maybe that like Jackie, its not as long as this.

      B

  • nannettesea
    nannettesea Ravenwood

    Posted

    This all sounds very scary, indeed.  Seeing your doctor and getting a FULL blood workup, if you haven't, is the place to start.  Then move on to a specialist, once you have a diagnosis.  I don't recall where you are in your health journey...if this is new for you, or old/worsening.  Hope this helps, and best to you.

    Remember, panic and anxiety, which is common for me (not to mention depression), worsen our physical state.  So maybe try some mental calming exercises, or meditation, something that would help you.

    Be persistent, and hopefully you'll get some answers.

    Best,

    Nan

    • Ravenwood
      Ravenwood nannettesea

      Posted

      Oh, I've done all there is to do. I'm just getting worse for no particular reason that I can see. Sigh. 😕
  • Sassylass
    Sassylass Ravenwood

    Posted

    Hi Ravenwood,

    I don't have any advice, just sending you wishes for improvement and some flowers. Love, 🌸🌷🌻🌼🌹🍀

    • Ravenwood
      Ravenwood Sassylass

      Posted

      Thanks for the bouquet. It made me smile. ☺🌸🌹🌻🌼🐞
    • Sassylass
      Sassylass Ravenwood

      Posted

      Thank you Ravenwood. After waiting 5 months for an appointment I am going to see a rheumatologist tomorrow. I had a high positive ANA TITRE so primary doc referred me. Just pray that Something stands out and gives a clue as to why.
    • Ravenwood
      Ravenwood Sassylass

      Posted

      I wanted the rheumatologist to tell me something good too. I went to the rheumatologist about 9 months ago, and he did a ton of blood work on me. I had a positive ANA titer and a high c-reactive protein number. He checked me for lupus, but all of those markers came back negative. He agreed that I had fibromyalgia and chronic fatigue syndrome. However, he could come up with nothing else to do for me. I am not sure if I want rheumatologist to find anything wrong with you or not. 😦 it's scary not to know what's going on, but I don't wish anything awful for you either. I will just keep you in my thoughts, and I hope it will turn out well regardless.
    • Sassylass
      Sassylass Ravenwood

      Posted

      Hi Ravenwood,

      I thought I had followed up after my visit but maybe I never sent it. You are totally right. I got basically no news from the rheumatologist, and rather than be disappointed I am instead thankful that I wasn't diagnosed with something else terrible. LUPUS is what I was worried about. But I don't know why no further tests were done to check that. I was just kind of in a fog when I left and didn't ask the questions I should have.

  • Sassylass
    Sassylass Ravenwood

    Posted

    Hi Ravenwood,

    Thinking about you and hoping you are hanging in there. My daughter started high school today and I'm praying I can keep up with her this year. 53 feeling 83 and just wishing someone could find a miracle cure. Wishing you peace.

    • Ravenwood
      Ravenwood Sassylass

      Posted

      Sassy, high school can be tough.  My sister was hell on my parents.  I wasn't too bad.  I wish you good luck and lots of energy.  Today, I think I'm 43 feeling 63.  Not too bad today.  Just really, really tired.  Not sleepy, just fatigued.  Stupid disease.  I want a cure as well.  I could really use a day or two out of this house without feeling like I'm going to die afterwards.  Oh, well.  Thinking of you.  wink
    • Sassylass
      Sassylass Ravenwood

      Posted

      Ravenwood,

      I'm so so glad that you are not having a horrible day today. I'm having a pretty good day myself. Thank you for the good wishes you sent my way. I am sending lots of them your way as well. And thinking of all you guys out there and wishing everyone better days ahead.

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