Comfortably Numb

I’m not going to lie, having lived the majority of my life undiagnosed, it was a normal feeling for me. I was used to the disappointment, the disbelief, and the symptoms. But despite the symptoms getting worse every year that would go by without a diagnosis, in my mind I always knew something was wrong with me and it wasn’t in my head. It was not normal to be so sick  all the time, tired and exhausted, literally pushing yourself as hard as you can just to live what everyone else considers “normal”. 

I expected to feel different when I finally got diagnosed. I’m not sure what I expected exactly, but I know this is not what I had envisioned in my head. I guess I assumed there would be more excitement.

Positive motivation. Confidence. Acceptance. Validation. 

I don’t feel any of those things.

In fact, this is the worst I have felt in a while, both physically and emotionally.  I think the combination of medications, stress, all these appointments, more tests, more doctors, disappointment, and still having to live my life as nothing has changed, which I guess it really hasn’t, has sent me into a spiraling storm of emotions.

Instead, I'm here... 
  1. Still Sick
    • Considering nothing has really changed from last week, before I was diagnosed.
    • I still am having the same symptoms. Actually, scratch that, I’m having frequent and more severe symptoms due to the medication change.
    • One of my new medications is extremely violent on the stomach, so it must be taken with food, which is another issue on its own.
    • Plus my insomnia has become impossible to deal with. My mind CANNOT and WILL NOT stop… ever.
  2. Still Not Confident
    • Not all the tests have come back, so I still have doubts in my head. I know another test came up positive for a possible related/separate autoimmune disease, but the doctor doesn’t want to discuss it until the REST of the blood work comes back, which can take two weeks.
    • Still waiting to have my consult with vascular surgery and cardiology, plus my follow-ups from my GI, Immunology/Rheumatology, and Neurology. Also needed to schedule eye exam early to get a baseline to make sure there is no damage to my eyes from the new medication along the way. Appointment, after appointment, after appointment.
    • More tests are still to come: EEG on Wednesday, and then tests from both cardiology and vascular surgery, plus any that are follow-up orders from any of the other doctors.
    • No confirmation until all tests are complete on anything 100% at this point until all doctor’s are done with testing and treatment. It’s still a long journey to go.
  3. There was no positive motivation. Validation. Or acceptance.
    • I am grateful for the love and support I’ve received, both recently and throughout my journey to diagnosis, it really has helped to keep my spirits up no matter the good or the bad that I was feeling at the time. So many people have reached out, so thank you.
    • However, and I don’t want this to come across in the wrong way, but there’s no other way to say it, so I just have to throw it out there: I am surprised at how many people haven’t acknowledge that I got a diagnosis. Obviously this does not apply to everyone, but more so from the people I expected the most from. 
      • You didn’t call. Or send a text.
      • If you did, you didn’t mention it. You didn’t ask me how I am doing or how I felt about everything.
      • For some of you, there were no “I’m sorry I didn’t believe you”. Instead, it’s just ignored.
      • You were more concerned about talking about your problems, which I don’t mind – I’m happy to help- but really?
      • If you’d had asked, you’d know there are still some heavy things on the table being evaluated. I was told to start making preparations, planning for the future. But even if there wasn’t, Lupus, although not cancer, is still a very complicated diagnosis. One that will never, ever go away. One that will shorten my lifespan, especially if not managed correctly. And that’s IF it’s the only one.
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  4. Diagnosis hasn’t made anything easier, other than having a name.
    • I’m scared for my future. I barely make it through work in the last few days. I’m scared of losing my job. I’m scared of continuing to stress myself out to continue my job. To be disabled. That this will be my life forever. What do I do? No one can tell me. 
    • I’m scared that how I feel right now will never go away if I don’t adjust to the medications. And they want to add more in a few weeks. But how bad will I feel if I don’t take the medications down the line?

I just wasn’t ready for ALL these feelings, so hard and so fast. I didn’t expect to be better over night, but I expected to be doing better emotionally than I am currently. 

emotions
And I feel them all at once.

I know in time, and with more answer and certainty, things WILL be much better. Maybe I’ll be better too.

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Hello,
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?

Come on now
I hear you’re feeling down
Well, I can ease your pain
And get you on your feet again

Relax
I’ll need some information first
Just the basic facts
Can you show me where it hurts?

There is no pain, you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can’t hear what you’re saying
When I was a child I had a fever
My hands felt just like two balloons
Now I’ve got that feeling once again
I can’t explain, you would not understand
This is not how I am
I have become comfortably numb

I have become comfortably numb

O.K.
Just a little pin prick
There’ll be no more aaaaaaaah!
But you may feel a little sick

Can you stand up?
I do believe it’s working, good
That’ll keep you going through the show
Come on, it’s time to go.

There is no pain you are receding
A distant ship smoke on the horizon
You are only coming through in waves
Your lips move but I can’t hear what you’re saying
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye
I turned to look but it was gone
I cannot put my finger on it now
The child is grown
The dream is gone
I have become comfortably numb.

3 thoughts on “Comfortably Numb

  1. indisposedandundiagnosed says:

    I don’t know what to say.
    I know all too well.
    When they told me it was Gastroparesis (partially) I felt more anger than anything. There is no change after that. Nothing improves. You still have to manage it… It’s still very much invisible. It may be diagnosed, but it remains invisible.
    I am here for you, if you ever need to talk.
    I’ll continue to read your posts, and check up on you. I hope the new medication or their new management plan helps you – even in the slightest.
    It’s strange, isn’t it? We spend all of this time focused on finding something… anything. But then when we do get an answer, or somewhat of an answer, it’s still really disappointing. I guess secretly, we want the outcome to be good. I know I do… deep down. For this all to be a horrible nightmare that I have just woken from…
    Anyway, I’m here for you.
    Stay strong.
    We will fight together xxx

    Liked by 1 person

    • Undiagnosed Warrior says:

      It is just strange. And I know after years and years of being sick, it probably wasn’t going to something they’d just be able to fix right away or I take a pill everyday and Make everything all better. I guess I though a diagnosis would prepare me to take the steps to fight it, but I’m too tired and weak right now. I feel selfish for wanting acknowledgement too, but I’ve let those I care about for too long treat my illness like it’s nothing. I’m just in a funk. But thank you for your support and understanding.
      And I know my stories not over, it’s only changing direction.

      Like

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