Adrienne Interview

Oh, thank you for doing this.

Sure, so I have Myalgic encephalomyelitis, along with some comorbidities that make functioning pretty difficult. I'm in bed 23 hours a day and most of that time in a room darker than this and lying down. While the medical system is wonderful, it does struggle with complex illnesses and it has not, it's a bit behind when it comes to research and being able to help illnesses such as this. When I came across the Remission Biome project with the Renegade50 that they're doing, I was very excited because it was an opportunity to be on the forefront of research and trying some new things that could help increase my functionality. This is the first thing I've seen that has the possibility of triggering remission. So, it was very exciting to be able to participate in the first biome and have the potential to experience at least a baseline increase and potentially remission.

Sure, I was first diagnosed in August of 2020 which was not that long ago. I had been feeling extremely fatigued for years at that point. But it had gotten to the point where I was struggling to function after I would take my classes online from bed and I would crash, I could barely walk. I had also been in the hospital for a period of that time struggling with eating and with weight loss and on my chart one of the doctors wrote a potential diagnosis to look into of chronic fatigue syndrome. So, I went to someone who had a bit of experience with that in my city and asked about the post exertional malaise and about what diagnoses or treatment options were available. And at that point, after going over my symptoms of the heaviness in the legs and the lack of energy and the difficulties with digestion, the headaches, light sensitivity and inability to do the same kinds of things that I used to, I was diagnosed with ME/CFS. But unfortunately, there weren't any treatment options at that point and was just told to go home and wait a bit and I should grow out of it. I have not grown out of it and this has been exciting because it's now I've been taking some of the prep and I've already experienced a bit of a baseline increase.

Sure, when it comes to doctors, I've seen both specialists in many different subspecialties as well as my general practitioner. They've all tended to look specifically within their specialty. So, I've seen gastro, I've seen rheumatology, I've seen internal medicine. And oftentimes, I'll meet with them for a few times and then they'll come to the conclusion that the problem is a bit outside their specialty and I can call back if I'd like to but they're dismissing me from their care. So, the most help that I've gotten has been, I've been seeing a really good physiatrist who works with people with connective tissue disorders. And, I've been taking low dose Naltrexone now for a few months which has been the first thing that's touched my pain and that's been exciting. But, for the most part, it's just been trying different drugs that don't work and being moved around between different practices.

Prior to meeting with the physiatrist, my daily pain levels were usually around 7. I was experiencing widespread joint pain as well as muscle pain specifically below my waist to my feet but also just muscle weakness and the coathanger pain. The physiatrist was wonderful because I've been mainly bedbound. They were able to see me virtually over Facetime and then continuing to follow-up over calls. And, now with taking the LDN, my daily pain usually averages around a 5 and we're still playing with the dose of it.

My life was wonderful. I loved school, I had opportunities especially in music. I played the bassoon and was involved in my community orchestra and my wind ensemble and jazz band, all the bands I could be a part of. I also had a passion for science and statistics. I was involved in the provincial science fair and with my partner won best overall two years in a row. I loved school and was involved in the STEM club if that was an option or different social justice clubs. I spent time with friends outside of school and practiced bassoon usually about an hour every day. I had energy to spare and was able to go out of the house and go on frequent bike rides or walks and spent lots of time with family.

It's been unfortunate. This past after my first year of university. That was only able to happen because it was online and I've since had to drop out. I wasn't able to even do one course last time I tried. So, currently my education is on pause. Especially with Covid, social life has been a bit difficult. I communicate with my friends via social media. Though that's difficult because the response time that's socially accepted as normal is difficult for me to maintain. And, a lot of what brought us together is on pause because they're continuing with their education and I'm currently unable to. I've had friends who've been able to come over once a month or so and sit in my room and we'll have a short conversation for maybe 20 minutes and then I'll have to rest again. So, it's been difficult to have friendships change or fade away as my energy has not allowed me to continue in the same activities or involvements or sport that I used to be able to engage in. My friends are wonderful but our lives look very different and it's sometimes hard to engage on what I'm doing because my life looks the same and very uneventful every day and I don't just want to talk about my sickness or what's not good. So, that can sometimes lead to difficulty navigating conversations. But, I've also been blessed to have a really supportive family and some friends who are supportive and understand and continue to reach out to me and visit. So, I've been very fortunate in that aspect.

Mainly it's boring. It's a lot of time spent in your head trying not to think or doing meditation. It's taking a lot of energy to eat and having your days revolve around meal times and the small events that happen. It's having to plan when you're going to the washroom so that you don't waste your energy. And, a lot of times just lying in bed looking forward to the next time I'll be able to listen to a podcast or talk with friends. But yeah, mainly it's just a lack of stimuli and time seems to move at a different pace than it used to. The hours don't seem to mean the same thing. They kind of fade in and out. And, the main anchor points would be when I wake up and when I eat and when I talk to my family.

I think one key thing to understand would be that with different invisible illnesses, people often present their very best when they're seeing you and that's not a good representation of what their day-to-day would look like. For example, right now my room is pretty bright and I'm sitting up and engaging in conversation whereas that represents a very small window of what I'd be able to do on a weekly basis. I think understanding that patients often underestimate how sick they are in an effort to either present well or just as their perspectives have changed as to what healthy means for them. When I say I can't do something, it's not because I don't want to do it usually. It's because I'm unable to leave my room. I think for both doctors and for friends and family to understand that patients, there are no benefits to being sick other than the perspective that you gain, that you hope to bring to life when you're healthy again. It's difficult to be in chronic pain and chronic illness all the time. There aren't breaks from that. It's not enjoying life or enjoying opportunities to laze about. It's struggle to not do the things that you want to do and to have to say no and to pace yourself from simple things like listening to a podcast or to a symphony. It's difficulties of not doing things while longing for the things that you used to be able to do. I would love to be back to my normal life. I would love to go outside but this is currently out of reach for me. And when I say it is out of reach, it's not because I'm living in fear or overestimating the impact of illness. It's because I've had to learn to listen when my body says no or face the consequences.

It's been wonderful. It's been an opportunity to communicate and speak with other patients and see other caregivers of people who understand what living with ME/CFS or Long Covid is like and understand the experience. It's been incredibly engaging being able to be a part of new and upcoming research that's on the forefront of discovery and to be able to at least observe the conversations of people who are also interested in science and interested in changing what medicine looks like. It's Dr. T and Tess and Isabel are just incredible what they're able to do even within the limitations that illness brings. And I'm excited to see what they and what this community can accomplish as things go on within. It's been just under a year or so and already there's a protocol. That's in phase 2 of experimentation with the first 50 people in a cohort working with the protocol. There's been an incredible success rate of people that experience remission or experience baseline increases. And it's given me a lot of hope that I've been able to carry with me in the day-to-day aspects when days are harder. But, it's also given me concrete improvements just within doing the prep which makes me very excited for what things will bring as we move forward. It's also been wonderful to bring some of the resources they've put together to my doctors that they've been able to have a better understanding of where the current research is and what patients are living with and the importance of pacing. It's a community of people that are just lovely to be around but also scientists and self-experimenters who are just on the cusp of discovering something that I think will change the future of complex chronic diseases and the treatment and cures that will be available to patients going forward.

Thank you for having me.