An act of recovery: When treatments become triggers

Recovery : Noun

/rəˈkəv(ə)rē/

1. The action or process of regaining possession or control of something stolen or lost.

Some people living with multiple sclerosis experience a feeling of losing control over their lives. Depending on the severity of relapses and progression, MS can also cause a measurable loss of control over one’s body. This disease, which affects the central nervous system, impacts each person differently, occasionally making the process of diagnosis lengthy and confusing.

For Alastair Swann, experiencing the pain and discomfort of his undiagnosed MS symptoms drove him to turn to drugs and alcohol as a coping mechanism. By the time he received his diagnosis of relapsing-remitting MS in 2015, he was also struggling with addiction.

While addiction and MS are two vastly different issues, they both inherently imply a loss of control – one existing in the realm of the body, and the other existing in the realm of the mind.

Here’s Alastair’s story:

---

by Alastair Swann

I was 16 when my first MS symptoms appeared. What started with frequent trips to the bathroom, quickly escalated into a two week period of numbness in my legs. I was 19 and living in British Columbia when I was referred to a neurologist for my first MRI; but, unfortunately, I up-and-moved to Alberta before receiving the results.

Since that time, I’ve experienced numerous relapses, each leaving me with new degrees of disability. I began self-medicating with cocaine and alcohol as a means of coping with some of the more uncomfortable symptoms. It wasn’t until I was losing control of my bodily functions and in such pain that I could no longer walk, that I was finally sent to the emergency department.

At 27 years old, I was officially diagnosed with relapsing-remitting MS.

COPING

I conveniently dismissed my frequent urination by blaming it on my alcohol consumption. The truth is I knew something wasn’t right with my health and I was embarrassed about my bladder issues, so I used harmful substances as a coping mechanism.

I got clean for two months before beginning work in the oil fields in late 2012. At the same time, I began experiencing sciatic nerve pain – like someone was squeezing a nerve inside my leg that shot pain right through me like a current.

At this point in my life, I discovered that using methamphetamine took the pain away. It numbed my nerves enough that I didn’t feel the pain in my leg anymore, and it boosted my energy levels so I wasn’t aware of my chronic fatigue. At the time, I believed these substances were helping with whatever I was going through in my body.

In the summer of 2014, I experienced my first major relapse: I lost the ability to lift my right leg and began dragging it behind me. I continued to experience a lack of control over my bladder and bowels.

That summer, I went back to my job at the oil field after a week of using, and was overcome with exhaustion. I was having a hard time walking and it felt like I had to go to the bathroom every five minutes. I quit that same day – I told them I was leaving to seek treatment for my addiction – I never mentioned that anything was going on with my personal health.

HITTING BOTTOM

I’ll skip ahead a bit here and gloss over several months of detox treatment, doctors appointments, drug relapses, recovery attempts and more doctors appointments. I still wasn’t walking properly, and I was in a lot of pain. I was eventually referred to a physiotherapist who focused on my hips, which improved things a little, but my fatigue was at an all-time high.

In January 2015, I ended up back in detox. By the time I was better, I had lost my place to live. My only option was an emergency shelter for men with little or no resources. Things went from bad to worse when I woke up unable to physically get out of bed and having lost all control of my bladder and bowels. I was taken to the hospital where I was assessed by a neurologist who started me on a round of steroids, which dramatically improved my functioning. From there, I was referred to the Edmonton MS Clinic. I went for one visit, following which I experienced another major relapse: this time, I was paralysed from the waist down. It turns out I had quite a few active lesions on my brain and spinal cord.

I was discharged from the hospital with a treatment plan, which I started in September of 2015. I was prescribed muscle relaxants to help with nerve pain, and pills to help me sleep at night, but I was in such a bad depression and felt so hopeless that I took a whole weeks’ worth of my medication at once. I just didn’t care.

Ultimately, for me, my faith is what got me through. I had to look for a higher power, something greater than myself, to help me overcome. I realized I had nobody left in my life – my family had backed off and I just didn’t want to live that way anymore. I guess I hit my rock bottom.

REGAINING CONTROL

My next MRI revealed six new lesions on my brain and spinal cord. I was given a new treatment plan, which helped immensely. I’m now on a second line disease modifying therapy (DMT) and I’ve been relapse free for over a year.

For anyone who struggles with addiction, the idea of being prescribed muscle relaxants or antidepressants can be scary. I’m continually researching alternatives to medication in order to manage my MS. I’ve found that weekly massage therapy has greatly reduced the tension and stress on my muscles. I also use essential oils and eat a healthy diet. Exercise is a natural anti-depressant, so I took up swimming, which allowed me to ween off my anti-depressant medication and also served to cool me down and ease the tension in my back. Swimming regularly helps me sleep better too, so I no longer need all the sleeping pills. It even helps with my energy by reducing fatigue, so I don’t need to take medication for that anymore either.

Looking back, being completely honest with doctors no matter how embarrassing it may be was the most beneficial thing for me. They’ve heard it all, anyway. Doctor’s can’t read our minds, so letting them know what’s helping and what isn’t is essential. I realized I needed to be my own health advocate.

FINDING A COMMUNITY 

Following my diagnosis, I joined a support group through the MS Society of Canada, and I now lead it as a volunteer-facilitator. The group is geared at people who are young and newly diagnosed. Meeting face-to-face with members of this group has been a really strong support system for me. When it comes to addiction, the saying goes that one addict can best help and understand another addict. I believe the same thing applies with MS. Nobody really knows what something is truly like unless they experience it themselves.

More recently, I’ve taken on the role of MS Ambassador, through which I’ve begun working to educate and inform others about what MS is and how it affects me on a daily basis. I like to make sure people know there are support systems out there.

It’s important to me to be involved in the MS community. MS is a disease we have a good chance of beating in this lifetime, and I want to be a part of that. Not just for me, but for the people that come after me.

---

Today, Alastair is substance free, an avid swimmer and an involved member of the MS community. Through his journey, he’s come to appreciate the art of slowing down and taking things one day at a time. He feels strongly that we need to be our own advocates – within the healthcare system and beyond.

 We hope that his story has provided some comfort to others who may be facing similar struggles. If you’re looking for additional information and support, MS Navigators are available Canada-wide, Monday to Friday, 8 am to 8 pm Eastern time.  Navigators will assist you with getting information and support tailored to what you need, including connecting you with your local MS Society representatives. You can reach an MS Navigator by phone at 1 844 859 6789 or by email at msnavigators@mssociety.ca.