Having no control

One of the most frustrating parts about this illness, is even when I wake up and do everything right, and when I decide I’m okay with everything I’m given… My body can decide otherwise in a moment’s time and everything can change.

I take pride in managing my day to day outlook, my pain tolerance, my ability to deal with the stresses this disease puts on my body and mind, and finding joy despite the unfortunate circumstances of which I am given.

Today I was reminded just how out of control I am of this body of mine, despite how much I try to be.

Having zero control on what your body is going to do at any given time is not only frustrating, it’s life threatening, and it’s a constant part of this disease. It’s that element of which you just cannot simply get used to.

There are two main separate parts to this equation in my personal case, there’s the pheochromocytoma tumors that are literally small grenades of adrenaline – they decide when they go off. They decide when they explode and assault me with mass amounts of adrenaline, all within a moment’s time, which make my heart race and pound so hard it makes my chest hurt so bad, my body drenches in sweat for more than ten minutes at a time, I get a stabbing pain in my head which is so intense it can sometimes alter my vision, I get dizzy, this all makes me so nauseous I often vomit from the intensity of excessive adrenaline in my body, and once it’s finally calmed down I have zero energy left, I am robbed of everything left because all of my body’s ability to fight just went into that moment. 

This is my life every day, sometimes twice a day, I don’t know when it will happen, I just know it WILL happen. I can get ‘lucky’ and it can be less harsh, but even a less harsh version… It’s no picnic.

Then there is the second aspect of this no control, the adrenal insufficiency which I naively thought we HAD under control. A reminder of what this is, it means your adrenal glands no longer produce the hormones and adrenaline your body needs to live. Without these hormones, you die. So we are responsible for taking my cortisol in a synthetic form, see my page *A New Chapter – Pheo VS Fabulous VS AI* Basically everytime you are stressed, nervous, excited, sick, exhausted, in pain, exercising, etc you produce cortisol. Since I no longer naturally produce cortisol we have to ultimately guess when I need to take some. You can imagine my body probably gets stressed often, excited, nervous, exhausted, in pain, with all of the complications of my disease I listed above, and the stresses of everyday life, it’s difficult to manage! I take a standard amount per day, but sometimes – if I’m overly excited, overly stressed, etc, I have to be able to know when to take more, or else my body will absorb the little amount that’s in my body, and want more, but not have any, and… Essentially I crash, and go into adrenal crisis, which can lead to death if not caught. 

When I became adrenal insufficient, we learned everything there was to know, prepared ourselves for the worst of situations, and became super informed so that we wouldn’t have one more thing to worry about being ‘out of control’ of. I have an injection we have to bring with us everywhere with emergency cortisol, incase I ever go into crisis, it will save my life until I get to a hospital. I’d like to never need that injection. 

With all of the results lately, I’ve definitely had a lot of new information and stress, but overall I thought I was handling it quite well. I learned today that sometimes even when you think that you’re okay with everything, your body is the one who will tell you otherwise.

I  wanted to put my time I had until radiation into Christmas shopping, decorating my house, do some baking, just anything other than put all of my energy into hospital appointments. So today when I woke up I had every intention of going to do my favorite task, grocery shopping! 😁 I wanted to get some decorations, and buy some ingredients to eventually be able to bake some Christmas cookies. I had literally done nothing but awoken from my sleep, walked down my stairs, sat on the couch, read my emails, drank a few sips of tea, and then I was slowly drifting away into an adrenal crisis without even knowing it.

Serge recognized the signs of my eyelids closing, my head falling forward for no reason, basically looking like I’m falling asleep even though I had just woken up and was full of energy 5 minutes ago – and immediately went and got an extra dose of my cortisol steroid, It took every bit of strength I had to painfully crawl up the stairs on all fours, go into bed, and hope the steroid would work its magic and hope I wouldn’t have to use the injection for the first time and go to the hospital.

Although I am used to my body throwing me major curve balls everyday, and feeling perfect and then going into what feels like I am moments away from death in seconds during my pheo attacks, I just was not expecting this today. It certainly woke me up to the harsh realization that even when I feel we are in control, even when I do everything right, I am still not safe and need to be diligently prepared for these surprise attacks.

I didn’t end up having to go to the hospital, after a few doses of steroids and a lot of sleep, I eventually returned to a semi normal state.

It would be so lovely to have a break from this complicated body 😝

I am so lucky to have my husband Serge putting me first and making sure I am well taken care of, when I say he keeps me alive, I mean that literally and whole heartedly. As always I have him and my super hospital #muhc to thank for the outstanding care and advice. 💗

Serge you were my hero today, as you always are – but today you really were perfect. You always put me first no matter how bad you feel, and I love you so much for your selflessness.

2 thoughts on “Having no control

  1. Dear Fabulous,
    I wrote a similiar post to this yesterday. I woke thinking I “had it under control” for Thanksgiving and my family and guests . . . At 6 am I was in crisis with diarrhea . . . 3 hours in bed crying hysterically, going from over heated to shivering out of control with my husband saying it will be okay and what other med can you take you haven’t tried yet? It is so bloody frustrating to have plans and have your body make other plans. This was Thanksgiving. I’ve been the hostess for 33 family dinners and yesterday I didn’t think I could deal with any of it. The friends who called by phone found me crying hysterically because I can’t control my body much less eat. And if I’d eaten anything outside my five ingredient diet I would not have functioned today (and today was researching supplements that might aid in these crises as well as Christmas ideas via internet). And for the record after I posted a similiar story on my wildtype gist support site four other people chimed in with “me too”! One of which is in hospital. My husband is a saint, I’m thrilled you’ve got a saint in your household.

    Liked by 1 person

    • We really push ourselves to the limit especially when it comes to special events and not wanting to let others down, I can definitely relate to not wanting to let go of the ‘notmalcy’ we were once used to. I have been following your struggle through your thanksgiving, and I can only imagine how difficult it must be with gastro issues and limited diet, I remember how hard it was after surgery with never ending gastro issues. They are mostly gone now but I can certainly appreciate how painful it is to experience that on a daily basis, please be kind to your body throughout the Christmas season Cathy. I’m sure your family wants you to enjoy it as much as they do. Our husbands are everything, yes they are most definitely saints THAT is for sure!! I hope after everything – you managed to enjoy the day with your loved ones 💛 Thank you for reading

      Liked by 1 person

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