Ugh. I don’t want to do this anymore. I don’t want multiple sclerosis or lupus. I don’t want to wake up and try to get through another day this way. Why won’t it just all go away? I want it all to leave me alone! I’m busy!

All of these feelings just keep stirring up in me lately. I have a good idea it’s from writing these Blogs and sharing myself and digging it all up. I know it’s for the best. I know it’s healthy to feel. But it’s a lot. It’s overwhelming.

I find myself in these waves of feeling sorry for myself. I start to cry and I’m not sure why. I still have tons and tons of grieving I feel. The grief feels endless.

When I was 25 I had my life ahead of me. This was it. I was invincible. Nothing could slow me down. Go go go. Push push push. I wanted more and I was gonna get it. You name it. There were no limits.

And then life hit me in the face, in the body, the whole ego. I was knocked down. It was more mental at the time. Yeah physically I felt crappy but I wasn’t too aware of it because I was the energizer bunny and I had some major denial. I couldn’t believe I’d have to have an MRI. I couldn’t believe that the MRI technician would look at me as I came out of that AWFUL tube as if I was going to die. I couldn’t believe I would have to be rolled out to see my sister and my husband in the waiting room in a wheelchair. I couldn’t believe I was alerted to call my doctor the first thing the next morning and it was very important I do so. How did I sleep that night? I doubt I did. I was completely freaked out. I couldn’t believe it the next morning when the doctor called and told me to get to the hospital now because there was something SERIOUSLY wrong with me and she was really worred. I am truly grateful that my sister was there visiting (soooo sorry to this day that her trip was completely altered by this situation) and she helped me get through it. And then to see my husband at the hospital helped so much. I lost my innocence then. That was it. WHAT WAS WRONG WITH ME? WHY WAS THIS HAPPENING? WHAT DID I DO WRONG? HELP?!

At first they thought it was a brain tumor. Then they thought it was a brain infection. Then perhaps it MIGHT be MS. Those were the 3 longest days of my life in that horrible hospital.


How did that happen? I never thought I could face another day. I didn’t know how time could pass. I was so horrified and traumatized by the entire experience. I felt weak. I felt defective. I wanted to run away from me.

But I didn’t. Somehow I didn’t. I’m still here with me. I have a wonderful husband who never left me. He has taught me how to be with me. I have loving family and friends and a major support network who has held me together. I’m still trudging on my path and along the way I picked up another disease, lupus. I still have so many of these painful feelings. I still feel weak sometimes and very much like a burden. I still feel defective. I still feel so much grief from new things and sometimes it’s the moldy kind that’s been sitting in me very down deep in my soul. Some of that is definitely coming up now.

I don’t want to do this anymore. I don’t want to have to deal with it but I will. Why? Because I don’t like the other choices. I either live with it or I don’t. And somewhere along the path I have learned to slow down enough to get to know me better, to stop and smell a flower, to look up at the sky and gaze at the clouds (and they always bring me some peace), to talk to a friend, to smile and connect with a stranger and to put one foot in front of the other. And for all of these things I am truly grateful…

Thank you all for reading. This was a hard one. Sometimes it feels like a big emotional hairball that just needs to come out. This was one of them. And I am feeling some relief now.

I guess I gotta just KEEP ON KEEPIN’ ON!!

Trudge trudge trudge.

Categories: Uncategorized | 4 Comments

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  1. Bonnie B.

    Hi Nahleen,
    Yea your right, you have been dealt some pretty ugly stuff, but it always could be worse and you know it, because you’ve been there, you’ve walked through the fire. Look how far you’ve come in 10 short years. And the important thing is that you have your whole life ahead of you. They’ll be good times, they’ll be tough times, but the good times will always out weigh the bad. Really you aren’t defective, your unique…. I don’t see you as defective, you’re a blessing to all of us. Corey is so blessed to have you by his side, he loves you with every ounce of his being. So take the time to smell the flowers as you go along lifes path, and enjoy every moment that you’ve been blessed with.. Know that we all love you and think of you often…. Big hugs for you Nahleen ….
    love and miss you lots,
    Bonnie (your Mommy-in-law)

    • nahleen

      Oh my goodness Bonnie Mommy-In-Law! Thank you so much. You are so sweet. I am so very touched. Sending you a BIG CYBER HUG!!!

      love and miss you lots,

  2. The “I don’t want to go on like this” was a big part of my suicidal ideation and what landed me with a 5150, locked up in Glendale Adventist last April, beautiful.

    But it’s been a hard-fought year since then, and I can tell you: Life with MS and a good attitude or trying to ignore it is far FAR superior to life with MS and a bad one or wanting it gone.

    The sooner you get with “my body is part of me, and going on is just something that’s part of living” the sooner you won’t feel entrenched in the pain. It’ll be more of the background noise, like fuckers at a rock concert who feel the need to sing along poorly to the shit that’s on stage. It’s like, “Did you come here to see the show or to sing to the band?!” Just let it melt into the background if you can.


    • nahleen

      Thanks Rae. Agreed that trying to have it as part of my body is what helps the most and that it’s all part of living. Also trying to remind myself that it is ok to have these feelings and that they come in waves. Fortunately, the hard days are nothing like they used to be, they’re not nearly as intense. They are what they are. But sometimes it is just too much and it comes bursting and bubbling to the surface. If I don’t get it out I implode.

      So so sorry to hear that you went through all of that last year. I hope things are going better for you. I do think it’s the bad days that help us have the good days and appreciate even more all of the positive parts of our lives.

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