When we are in a chronic state of stress, it causes a physiological and psychological response called survival mode. This means the MIND AND BODY are focused on one thing and one thing only: danger ⚠️
This mode involves the release of stress hormones and the activation of our stress-response systems.
Here’s the thing: this mode is essential, it’s life or death because our bodies NEED to be able to detect a threat and know the difference of when to fight, or flight
Now, imagine not being able to make your way out.
That is what life with an adrenaline secreting tumor is. Your body is trapped in this state, regardless of how calm your mind is. The TUMOR(s) are producing or rather secreting these stress hormones in excess. You can’t shut it off, you can’t control it, and so your body is constantly feeling like there’s a threat even when there isn’t
Someone who’s lived with this disease, even the trauma of it, will catapult the system into a survival state. Just as any disease or trauma can.
What I’m talking about is a little different… but still intertwined. I’m referring to a forced physiological impact from an over production of stress hormones SECRETED by these tumours. Still with me? Our bodies are withstanding a physical trauma every single day. Pretty wild huh?
You will often hear pheo para patients explain this disease as being chased by a predator all their life. Like a lion is running after them that never quite catches them… but is always on their tail
I want to empower you with information that can only be understood from a lived perspective. I want to show you how you can fight back – by not fighting at all
I don’t think we can ever fully explain to someone who doesn’t have this disease quite what it feels like or what it does, but I try my best. Why?
I feel it’s important for us to understand (to the best of our abilities) how this impacts our daily life.
To be able to differentiate how much is the disease and what it us. How much we have control over, and what we cannot. Allowing ourselves and our loved ones to better manage the impact of a longterm chronic state of stress.
I am approaching 32, which means I have been actively living with pheochromocytoma for over 13 years. That is almost unreal to think my body has been in a chronic state of stress for that long and it has been able to survive. Even when it was so close to the end
Let’s take a moment to honour the absolute incredulous miracle our bodies perform every single day. Pause here to feel those vibes!
I’ve explained a pheochromocytoma attack hundreds or thousands of times, but when you hear it from a stress response perspective it’s so different. When we truly understand the impact on our entire system… we can take back some control
A control we are often left feeling isn’t possible or simply cannot exist. How we take back control is by learning to shift back into the parasympathetic nervous system when we’re not actively in attack
Your parasympathetic nervous system is a network of nerves that relaxes your body after periods of stress or danger. It also helps run life-sustaining processes, like digestion, during times when you feel safe and relaxed
If we are constantly trapped in fight or flight, (which many of us endure for years with this disease – and years AFTER removal!) our entire system begins to misfire and that is what we call survival mode. Where we can’t function properly because our body will never relax and feel at ease
Medically, they use medications called ‘blockers’ to protect our system from the output of adrenaline hormones. It allows us to withstand a higher level of adrenaline and can protect us from having a heart attack or stroke.
With metastatic disease, we go through different forms of treatment such as surgery and radioactive therapies like MIBG or PRRT to try and shrink and/or reduce metabolic activity from the tumor. You can click to learn about my personal experience with these, but….
Something I wish I’d known early on is how all of this impacts the nervous system. How it’s crucial to understand this impact and do what’s in our power to protect it. We can’t simply turn it off, but…
Making a conscious effort to shift back into the parasympathetic system helps– you notice I say effort. It’s not a guarantee that we can control or fully combat the effect the hormones are having on our bodies. But I know from experience – it’s better to try. Especially when treated palliatively, it helped to extend my life.
The reason I’m sharing this and will continue to talk about it is because this disease is all consuming. We deserve to know more than how to barely survive – we deserve to know how we can live a life that is balanced and feel safe in our bodies
I’m not quite there yet, but I can promise that the ways I’ve learned and incorporated different efforts into my day to day life has helped. Each day I feel I take a little piece of me back. I feel I learn to cope more effectively, and most importantly – I feel a little more calm and able to come back quicker from the attacks. I will even go as far to say that the attacks are less aggressive right now with the combination of both my efforts and the medical intervention. Keep in mind I am not on active treatment – other than pharmacological blockade.
I will never say for certain what is specifically made the biggest impact or what will work for you. We are all different and these disease is impacted by a number of things. I just share what I know and what I do with the hope that even one thing can help ease some of the pain.
15 things to incorporate into your daily routine:
This isn’t something we learn at the doctor unfortunately, so take notes my friends! In no particular order, I am constantly updating this list.
- Guided meditation. I simply cannot stress how important this is. This is something that is free to access, can be done as much as you want, and has proven scientific benefit dating back thousands of year. If you’re skeptical, just try 5 mins a day. You don’t have to sit cross legged, your mind isn’t too busy, you are simply listening along with a voice that is instructing your body how to relax from a subconscious level. I wouldn’t make it through my most painful procedures without years of meditation practice. Fact: meditation/hypnosis used to be used as anaesthesia! Search on YouTube for free meditations specific to your mood and schedule. The mindful movement and Michael sealy are some of my personal favourites.
- Deep breathing: too obvious? Most of us don’t mindfully breathe from the belly. Next time you’re feeling stressed, pause, take 3 deep breaths by inhaling through the nose expanding the belly and then exhaling by the mouth. You can also follow along with breathing exercises through certain apps like ‘aura’ or ‘headspace’
- Noise + Light: if you’re feeling reactive or triggered, dim the lights, ask those around you to speak quietly or leave the room and go to a safe place. This is especially important while in hospital since health care workers are trained to speak loudly, and the lights are very harsh.
- CBD: always check with your doctor first as it can counteract with other meds. I’ve had amazing success as of recent with CBD oils. I have tried both THC therapy and pure CBD, the THC aggravates my tumours + symptoms. CBD on its own alleviates and calms my system during the day and helps me sleep at night. Do your research for quality & safety! Sleep has been my biggest struggle over the years with all the residual adrenaline. However it’s so essential for our healing, if you can find something that works for you it’s such a blessing. I use a specific sleep compound that includes melatonin and CBN, this has helped with pain and sleep quality which has in turn helped me to calm my nervous system by being able to heal through the night.
- Zero gravity position: raising your legs above your heart. NASA puts astronauts in zero G before take-off to equalize their weight and ease the stress on their bodies as they are launched into space. Cool right?! It is said to benefit digestion, breathing, and provide proper blood circulation. They have beds with this technology, wedge pillows that offer this ability. Or you can prop your legs up against a wall, or build a pillow fort. Whatever works for you
- Gentle movement, walking, light stretching, anything you’re able to do. My husband and I have been enjoying Justin Agustin fitness videos. They are designed for a true beginner and can be incorporated while in active treatment. They can be modified to both of our disabilities and are mobility focused. Thai chi, and other forms of gentle movement can be incorporated as long as you have approval from your doctor and are comfortable. With pheo paras this is tricky as anything can set it off, but keeping in mind that muscle atrophy and pain is worsened when not moving at all. The idea being not to elevate your heart rate at a spike is key. Physio movements can also be done in bed with assistance from a caregiver.
- Red light therapy: only 10 mins to see incredible benefit for mood, pain, and anxiety. I recently invested in a home setup because I needed the access safely and consistently for what I’m looking for. Laying in the warm red light is calming in itself, but it’s proven to have benefit for a host of other things. The idea behind red light therapy is that it’s healing the body from a cellular level. It’s actually healing the mitochondria which helps with SO many functions in the body. Don’t take my word for it, just look at the science. There’s plenty of clinics, spas, and salons that have red light therapy. There is also a wide range of options + sizes for home. This is the company I used.
- Vagus nerve toning: a device I’ve been enjoying is called ‘sensate’. I was first just trying it out but am now a firm believer it has an incredible impact on my overall well-being. It’s a necklace that uses is infrasonic technology to stimulate the vagus nerve. It vibrates against the sternum paired with calming sounds on an app through your phone. You choose how long you want your session to be and select the music and just enjoy. It’s scientifically proven to ‘tone’ the vagus nerve with continued use. I love when I find things like this and they actually work. Again, just the 5 mins of calm is beneficial BUT with built in deeper benefits. Absolutely phenomenal and has helped many others see the same benefit! Very promising
- Nutrition plays a role in everything. I’ve talked about this before and if you have pheo or para you probably follow a low tyramine diet. If you’re wondering what that is – the MAIN no no’s would be fermented/pickled foods, processed foods, and soy. Having MCAS I can’t eat foods high in histamine either or else my system goes haywire. Being mindful + learning what triggers your body’s stress/anxiety helps a lot! I will never recommend any specific way of eating, because we are all individual. I think knowing what not to eat can be pretty life changing to our system.
- H20, If you are dehydrated, your body is not functioning properly, and therefore may cause increased levels of stress. Ever notice your heart rate increases or feels like it’s skipping beats when you don’t have enough water? There are many many tricks to stay hydrated, this isn’t something to skip on.
- Journaling: a daily self care practice that can release so many thoughts and emotions. You don’t have to love stickers or even like writing. However it can be used as a way to ‘brain dump’ whatever emotional storage you’re bringing around with you. Think of a journal as your safe space to say whatever you want without being judged or have to think about how it sounds. Just write it out, let that shit go!
- Trauma coaching: at the beginning of this year I made it a goal to begin treating my PTSD. It’s no secret that the body stores trauma, this was one of my ways to try and get it out. There are many forms of healing therapies that exist now Vs traditional talk therapy. I personally wasn’t a fan of that – but doing whatever feels safe and comfortable to you is key. I just happened upon a trauma coach during a cancer support conversation and it’s changed my life. We are doing a focus called ‘internal family systems’ or ‘parts work’. It’s been close to 6 months, the most notable difference I’d say is being able to slow down. When you’re stuck in survival mode, we will often not want to just ‘be’. We always have to be doing something or distracting ourselves or else it feels too overwhelming. This is what I wanted to get away from, and am proud to say is starting to happen for me. I feel I have the tools to manage my triggers and reactive states. Click here for more information regarding trauma coaching
- Self care: this is meant to make you set aside the time to care for yourself. It’s amazing what an hour or two of doing something just for you can impact our mood and peace. When I’m feeling particularly stressed, I may take a bath, or maybe I’ll sit and listen to music while doing my skincare routine. The point is to be intentional and really set aside the time to take care of you and you only.
- Gratitude practice: it may sound silly at first, but I’d recommend reading this book if you’re new to gratitude practice. It shows how at its simplest form being grateful can change how our bodies feel. If we’re only grateful when things are going well – it’s easy to get caught off guard during hard times. I recommend writing down 3 things you’re grateful for each day, this simple exercise when added to a daily routine completely changed my ability to cope. Which in turn helped me return to my baseline state of calm.
- The art of doing nothing: there is so much power in this one. I won’t explain much further, this comes with time. I haven’t fully achieved this ability yet, but I try every day to just be with myself and do nothing for even 1-2 mins. You may be reading this and saying “well doing nothing isn’t hard?” Yet in survival mode, this can seem like an impossible task. If you know you know
There’s no one formula to magically shift out of survival mode. As you can see, it’s an ongoing daily effort to help relax our system. It’s a combination of emotional, physical and spiritual needs. It is grounding ourselves, reminding our brains there is more to life than suffering, it’s living – not surviving
I hope wherever or whenever this finds you, it reminds you that our bodies are capable of incredible things. We are never broken, we are healing. We can take pieces of ourselves everyday. Each one of these practices has its own unique way of helping us to return to our baseline state of being.
I’m here to remind you that no matter how hard it tries, pheo cannot take away your ‘fabulous’. I hope these practices offer the gentle reminder you needed to feel more like you.
you are the lion.
Thank-You. Not only does that help me (with a grumpy pheo) as I often feel alone as well, it helps me with options to try.
This also helps me find the works to explain what it is I deal with and as it has crept up on me I no long know what “normal “ is.
So this is such a great help.