*Note from A Chronic Voice: It’s our pleasure to have Trevor with us today. I am always on the lookout for male voices within the chronic illness community as they are rarer, yet equally as important. The male to female ratio for many chronic illnesses lean toward women. For example, nine out ten people with Lupus (SLE) are female. Hence you could say that men are the minority within a minority.
Add to the fact that men and women inherently tend to communicate and express our needs in different ways, and also the stigma of strength tied to men within society, and it can be an extra lonely road for them. So thank you for taking the time to share your story today, Trevor. It is my hope that it not only raises awareness of Multiple Sclerosis, but also provides an “I’m not alone” moment for others who live with chronic illness out there.
On an otherwise ordinary morning in 2011, I woke up with a severe case of vertigo. I was in my late 20s, and to be honest, I didn’t even know vertigo was a thing that could happen. I tried to write it off as one of those weird things that happen, but it persisted. I later learned that it was my first Multiple Sclerosis (MS) episode. Unfortunately, it was the mildest episode I’d experience.
My Experience with Chronic Pain
My next episode came a few months later in that same year. This one was marked by extreme muscular pain. It felt like my leg was in a vice grip that someone would tighten and loosen, but mostly tighten. Much to my dismay, the pain never completely subsided.
For those of you who don’t have MS, I’ll explain. In the early stages of this autoimmune disease, most people are diagnosed with what’s called Relapsing Remitting Multiple Sclerosis (RRMS). This is one stage of the disease, and it’s characterized by episodes that last 1-2 months before they subside.
But the most problematic thing about these episodes is that they can (and often do) cause permanent damage. This is what I experienced during my second episode. My pain was less intense after that episode, but it never went away completely.
Now, here is where most people with chronic illness can relate. Many chronic illnesses come with some level of pain. If you let it, chronic pain can really derail an otherwise happy life. Add more layers of chronic disease, and it’s even easier to succumb to hopelessness and rage. But I make a conscious decision to do the exact opposite. It’s a decision I make every single day.
Here’s why and how I don’t let my chronic disease prevent me from living a normal life.
1. We Only Get One Life
As cliché as it sounds, we all have the same number of seconds every day. I can spend them dwelling on my problems, or I can spend them focused on more important things. I’ve done it both ways, and there’s no question that focusing on pain and problems is a waste.
This may seem morbid, but we will all eventually die. When you’re on your deathbed and thinking about your life, do you want to remember days spent curled up in bed or days out living life to its fullest?
Even on my worst days, I regret decisions to do nothing, more than I regret a decision to do something. Even if it’s just picking up a book to read, at least my day was made valuable by learning something new.
2. I Always Maintain Hope
When you have a chronic disease like MS, your doctor probably isn’t a fountain of hope and positivity. On the contrary, they usually prepare you for the worst. And although there are many promising treatments on the horizon, the old standby drugs simply don’t cut the mustard.
At best, drugs like interferons will slow the progression of your disease. So, you may stay where you are or get worse. There’s not a lot of hope in that.
That’s why I choose to focus my energy on alternative and cutting-edge treatments. This is what led me to stem cell therapy. My doctor told me about a trial he thought I’d qualify for, and I was lucky enough to get a spot. Stem cell therapy has helped me live a mostly pain-free life. I still have issues, don’t get me wrong, but the debilitating pain isn’t an issue. And I know that if I can find a treatment to help with my pain, there must be other treatments that can help. I choose to have hope, and that keeps me going every day.
3. I Share My Struggles & Receive Support
I’m part of an active online support group that keeps me accountable. I’ve been part of this group for about three years, and it’s made up of others who have MS. We all have different symptoms and challenges, but we all share the same passion for life. In this group, we share successes and failures, and we check in on people who are inactive.
You may find an online support group like this, or you may have one or two close friends who provide this level of support. I find it super helpful to have someone check in on me whenever I fall silent. It helps to know people care.
If you’re struggling with MS, chronic pain or any other illness, my best advice is to avoid dwelling on your problems. If you need help with this, let someone know. People who care about you will be happy to help you live a better life – whatever it takes.
*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
Read More: Give Your Best Anyway, Even When You’re Feeling Depressed
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Hi, as well as photophobia, I have extremely painful, sore & inflamed eyes. It’s best when the sky is blue but when I can’t sleep, like now due to my horrible new neighbours who wake me up all night, I can’t do anything. I’m so frustrated because even though I don’t think I can manage it, I’m trying to return to work unwell as it’s my last chance (I’ve been long term sick a few years & in my 30s), I don’t want to be ‘unemployed’, I had plans, I wanted to buy a house now it’s all ruined. How do I get past this excruciating eye pain? Artificial light & sunlight trigger my eye inflammation which generally can be avoided (looking at ways to block it in the office or that’s a no no!). I haven’t had a holiday for 7yrs, I’ve spent most of my 30s indoors, I am not happy about that but how can I plan things when I don’t know if I’m going to be well enough on the day to get there? So frustrating…
Thanks Trevor! This is the philosophy I decided to adopt when I was diagnosed with severe RA. I felt like the clock was ticking but I still had so much I wanted to do. I can’t do it all but I will give everything else my best shot. Plus it’s much better for my mental health. Feeling like I had to give up was a very dark place for me. Plus I feel better when I’m about dwelling on my health. It’s still a work in progress though.
It’s always a work in progress, even for healthy people I think 🙂 Here’s to accomplishing our goals step by step!
I love this – so encouraging & uplifting to read and I think many of us need a reminder, at least from time to time, to hold on to hope, get support, and make the most of the one life we have to live. Thanks for sharing Trevor! x
Yes agreed! I am really glad Trevor chose to share his story, and encourage others despite his own difficulties 🙂
Okay I’m first very happy you have found some relief but I am 60 and I cant seem to decide to live my life, ME/CFS rules my life. Along with fibromyalgia, hashimotos, hypothyroid and bipolar. I cant seem to find that drive or that push to get up and keep living. Today cold, damp, dark and windy, I feel like I want vfc to implode upon myself, hope is not even a twinkle of light. If you can chose to live a life i applaud you!! I cant seem to find that option, is it because I’m old?
Hi Denise, as a fellow Hashimoto’s and Hypothyroidism patient, I’m sending a big hug.
Hi Denise,
Trevor will have to answer that question from his perspective, but personally for me I get where you’re coming from (and I’m only half your age!). I wrote another blog post about this here that expresses these thoughts: https://www.achronicvoice.com/2017/07/26/suicide-option/
Regardless, no matter how tired I am, for whatever the reason is, I know that I have to just hang on and see life through. Sending you good thoughts 🙂
Hi Sheryl and Trevor,
Good post and very true.
I do feel a minority sometimes as well. Firstly a man in a woman’s world in my home I have my 3 lovely daughters, wife and our au pair (not moaning about this!). I have Primary Progressive MS so puts me in the 15% of people with MS. I also blog a bit about my trials and tribulations with MS if you fancy a read.
Happy Christmas to you both. Keep up the good work and positivity.
Adam.
Hi Adam,
Thanks for sharing your thoughts and blog. I will definitely check it out! Hope you and your lovely ladies have lots of quality time over this holiday season 🙂