Did you really say that ?

It has been 8 months since I was told I had RA. I read the post here daily and it seems so different in my world. Oh, I have the pain, fatigue, most days every part of my body is at less twice its normal size. The meds are not working and we are trying something new and you all know it’s like starting all over at day one. But, I read so much about the great support everyone has and I started to wonder things like is it just my family that don’t get it.

It’s leaving me wondering am I the only person who hears things like.
Why can’t you drive to the mall?
Really there are no clean towels?

I still work 70 hours plus a week and try so hard to do all the things I have always done. But I find things everywhere I just did not get done and what I don’t see I am reminded of. My family doesn’t get it not because they don’t love me or they don’t want to get it. I really believe it’s because they can’t see it. No matter what you do, you can not see another person’s pain. The pain in my body is the pain that causes me not to function is equal to the pain in there hearts when I can’t do things with or for them. My fatigue that makes it hard for me to be able to do the littlest things is equal to there frustration with what I know didn’t get done. Oh, in the end, they all say don’t worry about it, we will figure it out but I can see the pure hurt in there eyes that just screams I don’t understand why everything has to change.

I know I don’t understand all of this and I have a lot to learn but what I have learned in the last few weeks is just to ask… Did you really just say that.

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Comments

View Comments (6)
  • Maine Doug
    4 years ago

    Hi Lenda,
    I understand the struggle to maintain “normality”. I also work long stressful hours. I was doing okay until my wife divorced me. Now I live far from any family or friends. Just me and my dogs. Without their unconditional love I couldn’t go on!
    The pain I can handle, but the loneliness and isolation is really getting to me! Glad I found this site.
    Hang in there! Together we are strong!

  • Lenda Robertson author
    4 years ago

    Hi Doug,

    I to think that is the hardest part the loneliness and isolation. People say you should change jobs but I did not have RA when I chose my profession. I did not have RA when I purchased my home or put my daughter in school. Some things just can’t change yet. I have to get something’s paid off so we can live on less money. I am so sorry you had to go though a divorce that is never easy. I am really happy you have dogs I to have dogs and they always know when I need more of them. And when my hands hurt really bad it feel good to run them there fur. lol .. Hope you have a wonderful day.

  • elisee55
    4 years ago

    Oh. And. Did I really say that? I meant it in the most kind, honest way. I wish you all the best.

  • elisee55
    4 years ago

    I am also sorry to hear your struggle. I went undiagnosed for two years before I finally found a new doctor willing to refer me to a proper specialist. I am surprised to hear you try to maintain such a rigorous work schedule. Part of my journey has been learning to accept the fact that I have to be willing to say “I can’t”. Not “I won’t”, but “I can’t”. I used to work 3 part time jobs, whilst single parenting my teenagers. My youngest now admits she wonders how I did it all. However, when battling auto immune disease, there are limitations to our desire to maintain the super human schedules of our ‘before diagnoses’ days. Really, we just can’t. And part of the journey is learning to taking steps to make life work with this reality. My family, my friend, but most of all ‘myself’ is the better for it. I still suffer from terrible pain and fatigue. But I’m happier and my life is actually ‘a life’ since taking steps to make it about looking after me when I’m so ill. Maintaining super human levels of trying to work those long hours cost me a lot. I hope it doesn’t cost more than its paying….

  • Mariah Z. Leach moderator
    4 years ago

    Hi Lenda~

    I’m so sorry to hear that the medications aren’t working for you yet. It can often be a long and frustrating process to find the right combination of treatments – it took over a year for me after I was diagnosed. The good news if that if you can find a treatment that works it can make a huge difference in your quality of life. So I encourage you to be honest with your rheumatologist and try to work as a team to find something that works for you.

    In the meantime, it will also take time for your family to learn to understand. I also encourage you to try to be honest and to talk about the issues you are facing, if you can. My husband and I try to think of my RA as “our problem” – not just my problem. We find that attacking my limitations as a team is helpful.

    Best of luck to you and remember that this community is here to support you!

    ~Mariah~ (Site Moderator)

  • Maine Doug
    4 years ago

    Hi Lenda,
    Thanks for your reply. I understand completely. I feel trapped by a “life” designed for different circumstances (2 incomes, current job). I also can’t make the changes needed because of need for income to pay my bills. I have created a one year plan to overcome my challenges and prepare to change my life to fit my new reality. It may take 3-4 years but I am determined to succeed!
    Hang in there! Good luck!

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