Explicit Language Warning
This article contains explicit language so may not be suitable to those who are easily offended by the use of bad language. My intention is not to offend anyone but this is also who I am and I do at times express myself through the use of bad language.
Table of Contents
Introduction
My name is Luke Scudder, and I currently have a diagnosis of four neurological diseases, including spastic paraplegia, orthostatic tremor, trigeminal neuralgia, and migraine channelopathy. I despise each and every one of them!
Yesterday, I published an article on the role of acceptance when it comes to a chronic illness or disease. This article is factual and based on solid scientific research, but it missed the mark on showing the human impact of a diagnosis and the difficulty in accepting these diagnoses. So I wanted to write another post that demonstrates the human side of this topic.
The spastic paraplegia causes a lot of difficulty with my legs, making walking extremely difficult. I experience intense daily spasms and spasticity, which is so painful. Other issues associated with this disease include poor balance and coordination, reduced sensation in my legs, and the dragging and, often, the tripping of my right foot. This is known as a foot drop.
Orthostatic tremor is a super rare and often misdiagnosed or ignored condition, and to be honest, mine was only diagnosed thanks to the suggestion of a student who was present when I saw my professor. This condition basically causes a high-frequency (very fast) tremor in my legs when standing, which causes them to become unstable and the tremors to radiate through my body. When a doctor places a stethoscope on my legs, they can hear what sounds like a helicopter, specifically a military one called a Chinook.
Trigeminal neuralgia is a seriously painful condition. TN, for short, is caused by damage to my cranial nerves—the nerves in my face. TN pain is like no other and has, by some, earned the nickname of the suicide disease. Almost certainly, due to the extreme nerve pain it causes, and unlike other pain, nerve pain cannot be cured or relieved by over-the-counter painkillers such as paracetamol or ibuprofen. The only medications that may work are anticonvulsants, which are typically used to treat seizure disorders such as epilepsy. The problem with these medications is that they can take weeks to work and cannot just be taken during an outbreak of pain.
I don’t fully understand the channelopathy side of this diagnosis, but I understand it has something to do with the brain. In short, I suffer from migraines like millions of people around the world. Which is debilitating and can cause effects for days or, in some cases, weeks. The worst migraines are the “silent” ones, aka the migraines without the headache! When these strike, I am left with crippling fatigue, disequilibrium, and the worsening of my other neurological symptoms.
I am sure you can imagine, just reading the list of my diagnoses and the symptoms they can cause, that the impact they have had on my life is huge and has been completely life-changing. Coming to terms with and accepting them has not been a simple task, and I would never describe myself as fully having this sorted out. I just think I have my shit together on more days than I don’t.
Originally, I thought this was wrong, but I am becoming increasingly aware that I will never be happy or fully accepting of these conditions, and I can best describe it as a grieving process. Similar to losing someone you love, you never get over it. But with time, you become more used to it and manage it better, with occasional rushes of emotion that make you lose your shit. Acceptance for me, as I would expect it to be for you also, is not a destination but instead a long and winding journey with many trips and bumps along the way.
Understanding Acceptance
Acceptance, when it comes to chronic illness, isn’t about throwing in the towel. It’s about facing the facts of your condition, rolling with the punches, and figuring out how to live a good life despite the limitations. It means stopping the endless war against your own body and instead zeroing in on self-care, adapting, and using what you’ve got to its fullest. Acceptance is a journey that takes time, patience, and a lot of self-love. Sometimes you’ll need help from friends, family, or even a therapist to get through the emotional rollercoaster that comes with it.
Acceptance doesn’t mean having everything under control all the time. As a life and business coach, the pressure to always have my act together can be overwhelming. But you know what? That idea is complete bullshit, and I’m happy to admit my weaknesses. I definitely don’t always have my shit together, and if everyone were honest, most people wouldn’t either.
Acceptance is about recognising that there will be good days and bad days, setbacks and progress. It’s about learning to ride those waves with grace and resilience. It’s finding a balance between pushing ourselves to live our best lives while also listening to our bodies and honouring our limits. Acceptance isn’t a sign of weakness; it’s a strength that lets us find peace and live authentically despite the challenges we face.
The Non-Linear Nature of Acceptance
Acceptance is a rollercoaster, not a straight path. One minute you’re content and accepting of the present, and the next you’re pissed off or gutted. This back-and-forth is normal and doesn’t mean you’re failing at acceptance. Just because you accept something doesn’t mean you’re bulletproof against feeling crappy. It simply means you’re figuring out how to live with those feelings while still facing reality head-on.
Some days, acceptance feels like a breeze. You wake up feeling invincible, ready to tackle whatever comes your way, and grateful for even the tiniest blessings. But then there are the days when everything feels heavy—frustration and despair tag-teaming to knock you down. You start questioning why you have to deal with this crap at all. These are the moments that test your grit and remind you that acceptance isn’t a finish line—it’s an ongoing trek with plenty of ups and downs.
“Some Days Are Just Outright Shit!” Luke Scudder
The Spiral of Despair
When we’re in those low phases, it’s like free-falling into a pit of despair where acceptance seems impossible, negative thoughts take over, and any glimmer of hope is snuffed out. This is when self-compassion is a game-changer. We need to remind ourselves that feeling overwhelmed, having bad days, and questioning everything is okay. By embracing our emotions with kindness and zero judgment, we honor our journey for what it is.
These moments can be a minefield for negative coping mechanisms. It’s way too easy to grab that tub of ice cream or pour another glass of bourbon, hoping to drown out the pain. But we all know these quick fixes only make the long haul tougher. When times get rough, it’s crucial to be mindful of our choices and find healthier ways to deal with our emotions—whether that’s going for a walk, a drive, diving into something creative, or just having a heart-to-heart with a trusted friend, if you’re fortunate to have one. There’s nothing like a chronic illness to route out your true supporters, and trust me, there are fewer than you’d believe.
Remember, acceptance isn’t about pretending everything’s peachy. It’s about acknowledging our pain and figuring out how to push through it with resilience and grace. So on those days when acceptance feels like an uphill battle, let’s cut ourselves some slack and remember that the journey towards self-acceptance is a marathon, not a sprint.
Negative coping mechanisms
When life goes sideways, it’s easy to grab for anything that promises quick relief. But those quick fixes usually end up digging you into a deeper hole. So let’s break down some of these negative coping mechanisms, including ones that I still use more than I would like to:
Poor diet choices:
- Comfort Eating: Stress hits, and suddenly that tub of ice cream, bag of crisps, or packet of biscuits looks like your best friend. Sure, it feels good in the moment, but this habit can quickly lead to weight gain and energy crashes.
- Skipping Meals: On the other side, stress can kill your appetite, making you skip meals, and this yo-yo eating messes with your nutrients and leaves you feeling tired and cranky.
Alcohol Consumption:
- Temporary Escape: For me, it’s a bourbon or a beer (or 5) that might seem like a great way to relax after a rough day. But what starts as an innocent habit can snowball into dependency. Alcohol might dull the pain for a bit, but it doesn’t solve anything.
- Health Consequences: Going overboard with alcohol can wreck your liver, mess with your judgment, and increase your chances of mental health issues like depression and anxiety. It certainly fucks me.
Recognise these for what they are: short-term fixes that often make things worse in the long run. By spotting these tendencies early on, we can start making healthier choices to navigate life’s chaos.
Strategies for Managing Bad Days
When you’re having one of those crap days, try focusing on self-care first. Call up a friend or family member if you need backup. Mindfulness, including meditation or deep breathing, can help too. It might sound cliché, but it works. These things can make the chaos feel a bit more manageable. And hey, remember, bad days happen to everyone. Asking for help isn’t a sign you’re weak; it’s proof you’re strong enough to admit you need it.
Forgiving yourself for not being “perfect” is crucial because perfectionism is a toxic trap that just ramps up your stress. Let’s face it: we’re all humans, and off days are part of the deal. Instead of tearing yourself apart over every little slip-up, try some self-compassion and forgiveness. Being kind to yourself can seriously boost your emotional resilience and keep your mindset healthy. So, when things get rough, cut yourself some slack and aim for progress, not perfection.
The Role of Support Systems
Having a strong support system can make or break us on tough days. Family, friends, and even professionals like therapists or counselors aren’t just there to nod and smile—they’re there to really listen, offer solid advice, and remind us we’re not in this mess alone. Their empathy can be a much-needed balm, giving us comfort and a fresh perspective, while their practical help can take some of the load off our shoulders. Talking about our problems with people we trust doesn’t just lighten the burden; it also deepens our relationships and makes us feel like we belong. So let’s appreciate and take care of these connections—they’re gold when life is both smooth sailing and a complete disaster.
Asking for help isn’t weakness; it’s pure strength and a damn smart move. Reaching out for professional support gives you the tools and strategies to deal with your crap. They provide a safe, judgment-free zone where you can unload your thoughts, understand yourself better, and pick up some coping skills. Remember, asking for help isn’t just good for you; it also benefits those who care about you. So put yourself first and reach out when you need to. It’s a brave step towards healing and growth.
I have had therapy many times over the years and have found online video therapy to be super convenient. I have also used Better Help, which tailors their pricing based on your means and employment status.
Acceptance as an Ongoing Process
Setbacks on the road to self-acceptance are part of the deal. Expecting to be in a constant state of self-love is just setting yourself up for disappointment. We’re humans, and our emotions and thoughts are all over the place. Remember, setbacks don’t erase the progress you’ve made or nullify your hard work. They’re just part of the ride. So cut yourself some slack during tough times and keep in mind that self-acceptance is a bumpy journey, but one that leads to greater happiness and fulfillment in the end.
In the messy slog of self-acceptance, you’ve got to celebrate even the tiniest wins. Maybe you noticed your mindset shift a bit, or you dared to step out of your comfort zone. These moments matter. Acknowledge them. By patting yourself on the back for these little victories, you’re boosting your self-worth and building momentum for more growth. So, let’s toast to every milestone, no matter how minuscule, and remember that they’re proof of our grit and progress.
Conclusion
Embracing the Journey to Self-Acceptance
Asking for help isn’t just a lifeline for you; it’s a gift to the people who care about you. It shows strength, not weakness. When you reach out, you’re saying, “I matter enough to need support,” and you’re giving others a chance to be there for you. This creates a bond of mutual care and understanding, making the journey less lonely and more rewarding.
Setbacks are lessons in disguise.
Setbacks? They’re just part of the messy ride to self-acceptance. They don’t erase your progress; they’re lessons in disguise. Think of them as stepping stones, not roadblocks. Each setback teaches you something valuable about yourself—your limits and your strengths. Embrace these lessons, and you’ll gain insights that push you forward.
Celebrate the Tiny Wins
Celebrate those tiny wins and notice how your mindset is shifting. This isn’t just feel-good fluff—it’s about building your self-worth and paving the way for more growth. Every small victory is proof of your resilience and determination. Here are a few ways to acknowledge these moments:
- Journaling: Write down every little success, no matter how minor.
- Mindfulness: Take a moment each day to reflect on something positive you’ve achieved.
- Sharing: Tell a friend or family member about your win—they’ll be thrilled for you!
Toast to Every Milestone
So, toast to every milestone on this rough but rewarding road. They’re proof of your resilience and progress. Whether it’s dragging yourself out of bed when you didn’t feel like it or finally tackling that daunting task, each milestone deserves recognition.
“The journey of a thousand miles begins with one step.” Lao Tzu
By acknowledging these steps, you’re not just tracking progress; you’re reinforcing the belief that you are capable and worthy of growth. So go ahead and raise a glass (or a metaphorical one) to every achievement along the way!
Embrace this journey with all its ups and downs—it’s shaping you into a stronger, more resilient version of yourself.
Hey, you’re not alone. Tons of people are dealing with the same crap, and together, we can build a community that actually supports each other. So cut yourself some slack, celebrate every win, no matter how tiny, and keep moving forward. You’ve got this.
