How AM I Supposed to Feel?

In my life, I’ve felt a lot of things. I’ve gone through every emotion, both expected and inappropriate. I’ve flown high and I’ve crashed and burned, and I’ve ridden on lows that lingered for months, years…

As with most people, though, I tend to stay somewhere in the middle, where I bounce around in how I feel. I have good days; I have bad days; I have in between days. I think I’m pretty normal in that. For the most part, I have always been an optimistic pessimist. Or rather, a realist.

But there’s something really screwed up with the universe when I find myself ecstatic to be told I have a debilitating and sometimes difficult to treat illness. The universe wore me down, repeatedly, and changed me. Ten years ago, a diagnosis of primary adrenal insufficiency with hypopituitarism would have devastated me. Last week, the same diagnosis had me crying tears of joy. That’s so screwed up. I should NOT be happy about being sick. Yet, I am.

I hate the way the world wears people down like that. As Diane said to me, “It’s not supposed to be this hard!” Referring to getting a diagnosis. It’s not supposed to be this hard.

My life has changed. I can’t grieve over being diagnosed with an illness, because the losses the illness caused to me happened a long time ago. There’s very little way to go but up right now, and yet… I’m sad. I’m not grieving. I’m not really all that upset or anything. I’m just sad. Songs on the radio are making me cry. Grey’s Anatomy made me cry. Sheesh.

It’s hard to realize that I’ve been fighting for a diagnosis for nearly five years. My entire world, my entire life, for the past five years has either been radically altered by, controlled by or changed by my medical conditions. Everything I was, everything I was about, had me seeking diagnosis. I read online journals, bought books, frequented online forums to read about symptoms. I searched for clinical trials, emailed doctors, paid for advice, and saw multiple practitioners both back home and in Houston. I was either fighting to get up out of bed, or fighting to keep from having to go to bed.

Every aspect of my life from my self image, my self esteem, my self worth, my work, my writing, my body, my sex life, my friendships, my relationships with my friends and family – every single aspect of my life altered, damaged, touched by this phantom illness that I could not get a diagnosis for.

I gained and lost so much weight. My skin isn’t the same. My body isn’t the same. My hair isn’t even the same – it’s not even all that red anymore. What’s up with that? (It’s still long and gorgeous though!) My appetite, my habits, everything.

Everything.

I am a broken woman, worn, tired.. I am twenty years older today than I was five years ago, and yet, inside, I feel like I have so much life left and like I have lost so much life already.

I feel like I’ve been holding my breath for five years, and I have finally been given permission to exhale.

But all I can think right now is, “Now what?”

Now what?

For the past five years, I’ve been sick. I’ve been fighting for a diagnosis. I’ve been disabled. It’s change me. It’s changed who I am, how I feel about things, how I feel about people. How I feel about myself.

And now I don’t know who I am anymore. I don’t know how to feel. I don’t know what my next move should be.

And that scares me.

So how do you stop dying to live and just start living, when it’s been so long since you’ve been able to do that?

I know who I was. I know who I want to be.

I just need to figure out who I am… and right now, that seems so very hard to do. That seems like something I’m not sure I want to do. I sit here today, staring at blank screens, trying to find words to explain how I feel… and they just aren’t there.

All the emotions swirl under the surface–I’m angry they didn’t find it sooner, I’m angry there was so much damage done to my brain and my body because they wouldn’t listen to me, I’m angry at everyone who ever doubted me for just one split second that I was really sick, I’m sad that so much has been lost, I’m sad that my children will never get back the precious time with me that was taken from them, I’m angry that Ryan has never had me be all the woman I used to be and that he has deserved from me, I’m angry that Lynn has had to be a much better friend to me than I could be to her, I’m pissed and sad about all the events and milestones in life that I will not ever get back.

And all they had to do was listen to me. I knew my body. I know, I knew.

And I can’t forgive them for dismissing me. I can’t forgive them for making me doubt myself. That was the absolute worst crime ever: the made me doubt myself. When I sat in the car with tears streaming down my face and said, “What if they are right? What if it is all just in my head?” I don’t mind them doubting me, but how dare they make me doubt myself.

I know that in a day or two, things will turn around. I know that I will get strong again, will buck up, will move on and up.

But for just a moment, right now, I feel suspended in mid air, alone, hanging here, watching the past and regretting. Worried about the future. So confused about right now. Suspended animation. Wakeful sleep. A grogginess about myself and life that is worse than any brain fog.

So I’m allowing myself a moment to just feel, without feeling… to just be silent with myself, with you all, to just be still and be quiet…

 

… and grieve.

Because only when I get through the loss, the grief, the sadness, only then can I find acceptance.

I love you all so much, for all the kind words, the prayers, the positive energy, the friendship, the comments, the faith, the energy… all of it. Thank you.

Love and pensive stuff,
Michy

 

If I lay here, if I just lay here, would you lie with me and just forget the world? Forget what we’re told, before we get too old, show me a garden that’s bursting into life…

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19 comments to How AM I Supposed to Feel?

  • Rissa Watkins  says:

    Grieving sounds about right. But I know you will pull yourself up and remember who Michy is soon. I can’t imagine dealing with that for 5 years. I know after just 5 months it is hard to remember who I am- but one thing I know- you can do anything you set your stubborn Texas mind to.

    Love you

  • Beth  says:

    I can’t tell you that I know how you feel. I don’t, and it would be an insult to pretend that I do. What I do know is that you are strong and solid and kind and decent. You have a spirit that is bigger than anything that’s been thrown at you, and that says a lot.

    In your shoes, I’d be bitter. Lost. Seething. Sad. Maybe even vengeful.

    You have to feel what you feel, for as long as you need to feel it. And then you will move on.

    You always do. Because you are you.

  • sharkbytes  says:

    It’s just the very worst when professionals refuse to believe that you know anything about what you are talking about. It’s SO presumptuous of them to say that you aren’t experiencing what you are. I probably would have shot someone, if I had been in your shoes… either them or me.

  • WindowShopping  says:

    Anger is good. Anger is strong. I have never known you to wallow in anger or to turn it against anyone or anything that did not warrant it. Sad is reasonable. I’m sad, too, for all you have lost. But strange as this will sound, I am also happy for all that you have gained – and despite everything, you have gained valuable things through this as well, because you are YOU. We’ve bargained… who knows, maybe the Universe listened (maybe it’s still listening). And long ago, far away, it all began with denial – a denial that you were ill, a denial that you needed to see a doctor, a denial you needed to be hospitalized. You have, in stages, accepted so much, adapted to so much, and overcome so very much! Improvise, Adapt, Overcome! (It’s not just a Marine Corps motto, anymore!) It’s what you have done. It’s what you do!

    You are loved. There are so many reasons for that! You become your best self on a daily basis – the best you can be! So take this time and grieve. You’re allowed. Grieve until you can find the acceptance that allows you to Improvise, Adapt, and Overcome – because THAT is who you are… THAT is MY Michy, my best friend, the woman I have come to know and love.

    The rest will fall in place.

  • Kathy Foust  says:

    My hope for you is that this gives you a bit of closure with the issue of even being diagnosed. You go out of your way so much for others thatit angers me that your doctors couldn’t take a minute to not even go out of their way for you, but to do just do their jobs-starting with giving respect to patient input. Be angry for a minute Michy. You have every right. Much love! Kathy

  • Sarah  says:

    I can’t say I know exactly how you feel because I don’t live life in your shoes…however I know the constant dizzy that I experience. I also have been a sufferer–for 12 years-Yep 12 =( I have yet to find my answer and am intrigued to learn more about the adrenal insufficiency and how you found someone to diagnose it. I have what I call “self diagnosed” adrenal issues because I can not seem to find anyone who will help or listen to what my body is telling me. I find the story of your life so fitting to how I have felt for so so long. Thank you for sharing and may you find strength you never knew you had!

  • Teresa Puebla  says:

    Michelle, I believe what is happening to us is our Karma and the universe is putting this together for us for a reason either we like it or not and there is a strong lesson to learn. I know is debastating, I have suffer “dizziness” this for 22 months, like you I have read books and joined many support groups and read and read sometimes I have to stop reading and take breaks because it gets too intense and depressing, Im waiting to see a neurologist for first time and have been told in can be another 6 months waiting !! Im also waiting for a ENG test which can take up to 6 months waiting !!! Is so frustrating as you said. Your blog is powerful and describes how a lot of us feels and will help a lot of people to keep going and fight for an anwser, you are helping me right now and I thank you with all my heart for that. May I ask you how your condition started and your symptom are ? In my mind I always thought I have an insuficient flow of oxigen or blood to my brain because sometimes I feel like passing out but most days Im feeling like if the floor moves to the right and umbalance. Are you taking any meds ? Are you feeling better ?

    • ~Michy  says:

      Teresa, I know you’re right. I totally believe that everything happens for a reason! I don’t always know what it is, but I do know that by writing about my health issues, I’ve touched others lives and helped others find answers they were seeking. I’ve also found comfort from sharing with people like you and the others here. Everything does come together in the universe for a purpose. I believe it!

      I’m waiting on the electric stimulation test thingy – I’ve put it off and put it off, but the alternative is a muscle biopsy and I really don’t want that!

      My symptoms started with nothing more than fatigue… I was just tired, all the time, at first. Then slowly, I was more tired, coudln’t sleep well, but was exhausted. Then I started to get achy and sore, all over, muscles, pain, tired, then my weight started creeping up, even though I hadn’t really changed anything. My head would get foggy, coudln’t concentrate well, and it just kept getting worse from there.

      By the time I was finally diagnosed, I was in so much pain I spent most days in bed, vomiting, shivering, and unable to even hold my head up.

      Today, I’m somehwere in between those two extremes and we’re still learning!

      The orthostatic intoleranace I have sounds very similar to what you’re describing with the dizziness and such. Look up two things and read more about them: Orthostatic Intolerance and Postural Orthostatic Tacycardia Syndrome. Your symptoms sound like both of these, and the two almost aways go hand in hand. There is treatment for it too!

      I take 22 meds per day – but I have a bunch of conditions now… if you have POTS/OT, it’s actually a pretty easy fix if they can confirm it…

      Thanks for asking – I AM feeling better, but I’m not there yet! I hope everyone finds the answers they seek! Let me know if I can do anything else or help in any way!

      Love and stuff,
      Michy

      • ~Michy  says:

        Oh, and… the test to diagnose this POTS/OT for you? Super simple – called a tilt-table test – completely noninvasive, no needles, no blood, no pokey!

    • Lynders  says:

      I am exactly like you and have been like this for 15 years!!!! I am like this every hour of the day. I am trying vestibular therapy for the last 2 months but not feeling any better. They say I have a unilateral vestibular disorder due to a 21 % vestibular loss in my left ear (who knows what that really means) I have developed anxiety and depression due to not feeling any better. I don’t know what else to do and I did testing 8 years ago and this was not found. I get the floor moving and like I am sitting in a moving boat. It mentally fatigues me. I support you all. I feel like I will never get better.

  • Marissa  says:

    Michelle, thank you for sharing. I recall when I first got my dizziness diagnosis. I cried in front of the specialist. I let out a cry that shocked him, hell it shocked me. He even felt the need to come over and awkwardly give me a hug. For 4 years I had exhausted my savings and searched for answers and now I had a label. What is crazy is when I got back home I recall feeling very similar to this post. This post helps me understand a little more the stages of grieving. I never even knew what about stages of grieving before I got this condition. Thanks again for your courage and know you are in my thoughts.

    Much love,
    Marissa

    • ~Michy  says:

      Marissa, I’m sorry you struggled with a diagnosis. I was at an urgent care center the other night and we were talking to the nurse and she was nearly in tears listening to my story. She says, “It shoudln’t be so hard to get a doctor to listen and figure out what’s wrong. That’s what they go to school for!” She said there are some doctors she won’t work with because they don’t listen to their patients! We know!

      I’m glad you have a diagnosis. I’m sorry it was so hard to get it. I know all too well how much money it takes to get there, and I didn’t have insurance either! It was tough! My friends and family are the only thing that got me through it – and all you wonderful internet strangers/friends!

      I hope you’re feeling better now than you were and are on the road to recovery!

      Love and stuff,
      Michy

  • Marissa  says:

    Michy,

    Thanks for your warm response. The crazy thing is I worked for a large hospital here is Southern California before this happened. I was more on the administrative side but I would get small glimpses into those that were tossed out of the system for not fitting certain standard protocols. It’s so crazy that I am on the patient side now.

    I have a diagnosis but it is currently being questioned. I have decided to put my energies toward moving forward and finding a job working from home. I may not be on the road to health recovery but I am on the road to mental health recovery from all this condition has put me through! Know I am here for ya if you need me. I am blessed to have my family but it is really nice to talk with people who “get it!”

    Much love,
    Marissa

    • admin  says:

      Wow… you’d think working in the field would make a difference, huh? How strange it must be to be on the other side. I watched a movie once that had a guy say he wished all doctors could get just a little bit ‘sick’ at the beginning of their careers, so they could be scared, and sick, and in need of treatment, just so they could know what it felt like to be on the other side.

      Keep pushing for diagnosis, but know that no matter what ‘name’ or ‘label’ they give it, we should always find doctors who make us FEEL better and not just doctors who make test results LOOK better!

      • Marissa  says:

        “you’d think working in the field would make a difference, huh?” I thought the same thing. Unfortunately, that was not the case.

        I will for sure keep looking for answers. However, I am more focused on trying to move forward and have the best quality of life I can.

        Hope you are having a solid weekend!

        Much love,
        Marissa

  • Josh Woods  says:

    Thank you so much for sharing. As I read this (with tears streaming down my face) it brought me back 11 years to the first doctors visit were I too was told it was “all in my head”. I know the feeling of frustration and self doubt, and I am sorry you experienced it too. I am in my 11th year of living with bilateral vestibular loss. I am 35. I’ve never held one of my children, (the oldest is 9) with out being fearful of falling. It shouldn’t have been that way. Depression and not knowing what was wrong with me beat me down for 6 years before diagnosis. I know how you feel and it is ok to be angry and to grieve. You have endured more than most can imagine. Be strong, life continues and your story has already blessed me by hearing again that I am not alone.

    • admin  says:

      Josh, thank you so much for your comment. When going through things like this, it’s both sad and comforting that others have been there. I wish no one had to go through it, and yet, it’s nice to know I’m not suffering alone – that sounds so horrible, but I know you who have been there understand too.

      Thank you for taking the time to comment… it means so much!

      Love and stuff,
      Michy

    • Lynders  says:

      Josh, are you doing vestibular therapy? I have unilateral vestibular and I have been like this for 15 years. Did they say what caused yours? Mine was “discovered” during the water in the ears testing and my vestibular therapist said she can tell with examining my eye movement. How do you get by daily?

  • At My Wit’s End » Michelle Devon  says:

    […] you haven’t been keeping up, I’ve written more about the health stuff here, here, and here. We’re emailing the doc right now, at least, Lynn’s composing the email for me, to see […]

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