Please Tell Me I am Not the Only One

It is really hard for me to write this, it has been really hard for me to do much of anything. Usually I write to let people know that they are not the only ones suffering from an illness and the problems that result from it, but today I am writing in hopes of your support, for you to tell me that I am not the only one.

In addition to an increase in depression and anxiety that was kicked off by not getting my disability approved, along with holiday stress, for the last week and a half I have been experiencing agoraphobia, which in simple terms is fear of open spaces or public places.  I don’t want to diagnose myself and shouldn’t, but the thought of showering (although I am managing that at least every other day), putting clothes on and going anywhere, driving, is terrifying to me.  And at the root of it all is, “Will I feel well enough?  What if I am somewhere (especially with Tyler) and become exhausted?  I was able to get out once with him this week and took him to an indoor playground and it did go okay but that was the only time I was able to break out of it.  I also believe part of it is that it is winter and I cannot bear the cold.  Putting all those clothes on.  Using the hair dryer, that physical act to dry my hair zaps my energy.

And then the guilt:  what a boring week for my son who has been the best.  I feel like the worst mom in the world.

I think of doctor’s appointments I have coming up, appointments I need to make and I am absolutely terrified about how  I will do it.  I feel like I have been sick for so long, I don’t know how to get out and be a normal human being, someone who can put on nice clothes and look nice or at least decent.  I mourn the loss of the pretty woman I once was.

I am in therapy, I take meds but what do you do when they stop working?  I am at such a crossroads in all areas of my health.  I am probably going to switch to Methadone because I just cannot afford the pain meds that work so well for me.  I am facing going on a new drug for Lupus; Benlysta.  My old one was making me sick by causing to me to pick up infections but I am afraid of the complications of the new one and have been putting it off.

There are lots of areas in my life that are problematic but I cannot shut down like I am doing. Where is my “Do it for Tyler” spirit?

So many people write me and say they find me strong and inspiring but for the past week and a half I am feeling neither.  I cannot find my faith or my optimism.  I don’t feel driven, I just feel afraid and sad.

Please tell me you have been where I am.  If you have any suggestions I am open to them. Or let me know you care and that you are praying for me and thinking about me.  Thank you.

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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13 Responses to Please Tell Me I am Not the Only One

  1. Emily, yes, the caretakers, advocates, mothers and fathers, sisters and brothers, all need support. Caring for one’s self first is paramount and you are brave to ask for it. I am so sorry to hear about your disability being declined, but this is not unusual. This does however, put undue stress, emotionally and financially on you and your illnesses. I am a retired/disabled RN, FM expert for Dr. Oz at Sharecare.com and author of a 434 pg book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author, Jeff Miller, PhD). In my former life I was advanced trained, educator, staff nurse in critical care and ER, and a Legal Nurse Consultant. Having the pain, brainfog, and many comorbid conditions changed my life forever, so I understand. I hope you will pick up a copy of our book. Besides having many helpful tools for coping, there are documentation tools for what you need in your medical record to qualify for SSDI or SSI, what they expect, and how illness affects your ability to function in life. Your blog here is a great example of that. It is about getting it into your medical record and having a supportive physician. This is the best help I can offer you. Search the title on Amazon.com and be sure to read the reviews. We are 5 or 5 stars, and I think you will find helpful information for coping effectively. Healing, harmony and hope, Celeste

    • Tendai says:

      Emily often reviews the books she reads and she has a large number of readers following her blog. You should give her a copy and let her review it. I am more inclined to read a book about chronic issues when someone I know has read and enjoyed it.

  2. Mama Kat says:

    I wish I had just the right thing to say! I imagine living with so many unknowns is both exhausting and terrifying. Thank goodness our kids love us so much regardless of our ailments and imperfections. I’ll be thinking of you!
    Mama Kat´s last blog post ..Happy New Year…Please Don’t Hurt Me

  3. Tendai says:

    You are not alone and I have found it does help to tell others you need help and prayer. I have felt energized by people praying for me or wishing good things and could find more strength to go on when I though I could not. I appreciate the rawness and realness of your life that you share with us and I am not expecting you to be a cheerleader for sick people everywhere. We are sick mamas supporting each other and now it is your turn to be supported.

  4. Blair says:

    Emily your not alone You Have every right to feel the way You do. I am in no position to offer support only to say you are talented loved * Your son loves you.

  5. Lisa says:

    Oh honey. You are not alone! These past couple of weeks have been damn near unbearable for me as well. I consider getting out of bed every morning a big accomplishment. Please make the necessary appointments and talk to us anytime you need to. Being the ‘face’ so to speak of everything is tiring and sometimes you just need to step back and let others take care of you sometimes.
    Lisa´s last blog post ..Day 30 – A dream for the future beyond the next year

  6. SickMomma says:

    Thinking of you, Emily!

    My only advice is to try not to be so hard on yourself. It’s OK for Tyler to have a boring weekend, week or entire winter break. By seeing his parents take care of themselves, Tyler is learning that self-care is a Good Thing. And there are a lot of kids out there who would be grateful for life to be boring, kids who aren’t as lucky to have such loving parents as Tyler does. You’re so far from being the worst mom; you don’t even qualify as a bad mom. 🙂

    Hang in there, Emily!
    SickMomma´s last blog post ..Happy Holidays!

  7. Emily says:

    test comment

  8. Melissa says:

    SickMomma hit the nail on the head… a lot of kids would be grateful for “boring.” Sometimes I feel guilty if I haven’t done enough to “entertain” my two and a half year old son during the day, but honestly, we can’t entertain them 24/7. And “boring” can be peaceful and relaxing. Let the world move at a break neck, frenzied pace. Home can be the haven away from all of that.

    Best of luck getting your disability approved. I’m assuming it can be reviewed and the decision isn’t final?? I’ll be praying for you and your family.
    Melissa´s last blog post ..My Foray into Flea Markets

  9. Funny you should call yourself the worst when my daughter’s dream would be to have me home and to stay home and just be by me. But I’m here at work and have to, no getting around it. So I feel like the worst a lot, too, even though maybe the time she and I do spend together would be more “exciting” or was before I realized what she wanted was boring!
    Christa the BabbyMama´s last blog post ..Nighttime’s When We’re On the Lookout for a Piglet On a Stool

  10. Oh I SO feel like I can relate! I have dealt with chronic daily migraines for over 2 1/2 years and on my bad days I feel so much guilt for just wanting to stay in bed. I don’t want my kids to look back on their childhood and only remember that about me. That is one of my worst fears! By the time I am home from work most days, I have so little left to give. They are a little older now, so understand more about the migraines….but it kills me when I say I have a headache and they said “Yeah, we know, we are used to it”. Just wish they didn’t HAVE to be used to it.

  11. Anna loretta says:

    Despite all our imperfections, our kids still love us. One thing that I know is that no one is perfect, but we can only do what we think is the best. Everybody has his moments. Sometimes they can be good and sometimes pretty bad, but all we do is learn how to live through them.
    Anna loretta´s last blog post ..http://www.maxworkoutsreview.net

  12. Helen Terims says:

    I understand what you feel. It is really hard for a mom that you want to give time for your son but you couldn’t because of some important appointment to do. Just don’t be sad and depress because you are not the only one experiencing this situation. There are still many people out there experiencing what you are right now. For sure, you will overcome your situation and you will become a normal human being.
    Helen Terims´s last blog post ..Try These Awesome Tips For A Great Smile

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