The MS Gym Podcast

Episode: The Unseen Weight of Chronic Illness

Date: April 23, 2025
Host: Jodi Feltham (with guest Lynn from Northern Ireland)

Episode Overview

In this deeply personal episode, co-host Jodi Feltham connects with Lynn, a resilient member of the MS Gym community living in Northern Ireland. Lynn opens up about her lifelong journey with Multiple Sclerosis (MS)—from earliest, misunderstood symptoms in childhood, to her struggles with delayed diagnosis, challenging treatments, and the unique mental health difficulties brought on by chronic illness and isolation. Intertwined with her narrative are themes of loss (physical and social), adaptation, and finding hope through new passions and goals for her family’s future.

Key Discussion Points & Insights

1. Lynn’s MS Journey: From Childhood Symptoms to Adult Diagnosis (01:20–07:58)

• Early, Misunderstood Symptoms:
  • Lynn retrospectively traces her MS symptoms back to age six, experiencing severe heat sensitivity that baffled doctors.
  • “There was unexplained illnesses from when I was about six years old...I was getting really, really sick when I would get really hot.” (B, 01:25)
  • At 14, she developed breathing problems (the “MS hug”), commonly dismissed as anxiety:
    • “I did not care about exams. I was not stressed. But every doctor was like, no, no, it is. It's anxiety. That's all that's wrong with you. It's like, it's not though. I just can't breathe…” (B, 02:10)
• Delayed Diagnosis:
  • Diagnosed officially at 24 after presenting with foot drop; misattributed to vascular problems initially.
  • “I was one of those weird people that had it from a child.” (B, 02:57)
• Barriers to Diagnosis:
  • Legal climate in the UK/Ireland causes doctors to delay diagnosing MS and limits open communication, fearing malpractice lawsuits.
  • “They do not tell you anything…my neurologist didn’t say the words to me. Probably for another six months.” (B, 04:18, 06:49)
  • This results in long gaps between suspicion and treatment.

2. The MS Experience in Northern Ireland (03:32–04:03)

• Prevalence Linked to Climate:
  • “Northern Ireland has one of the highest rates of MS. It's got to do with the climate, apparently…very little vitamin D…the temperatures just seem to increase. All autoimmune diseases seem to be worse.” (B, 03:32–03:39)
  • Clarified as a pattern similar to Scotland and Canada – regions with little sunlight.

3. Navigating Limited and Evolving Treatment Options (07:58–10:59)

• Early Treatment Frustrations:
  • Initially prescribed Rebif, which proved ineffective for her.
  • “They left me on Rebif for five years…long before they had a follow up, they realized that it hadn’t done anything. I was just getting constant lesions.” (B, 08:07)
• Access Inequities:
  • Limited MRI machines and long waiting lists slowed both diagnosis and ongoing management.
• Journey Through MS Medications:
  • Transitioned through various options as more became available: “...started on Rebif, then took a pill, then Ocrevus, and now I'm on Kesimpta.” (B, 09:54)
  • Switches Driven by Side Effects and Mental Health:
    • Ocrevus, though effective, caused severe hospital-related anxiety: “...it was a mental health thing. I took really bad anxiety to go into the hospital and the setting for that…couldn’t be doing that...” (B, 10:01)

4. Daily Life: Physical Loss and the Mental Health Toll (11:31–13:15)

• Current Limitations:
  • “I now am full-time in a wheelchair. I’m good pretty much from the waist up…but it’s my hips...I can’t stand up.” (B, 11:31)
• Mental Health Struggles (especially Post-Pandemic):
  • The pandemic intensified homebound isolation and anxiety, making it daunting even to leave the house for brief errands:
    • “I can’t do that—I’ve been housebound probably for so long that leaving the house is such a big thing now…I’ll think of any excuse not to leave the house which isn’t good. But I’m working on it.” (B, 12:06)
  • “It’s easier probably to deal with the legs than it is to deal with the mental health, but I don’t think it’s uncommon.” (B, 12:56)
• Jodi’s Reflection on Global Isolation:
  • “Covid added a whole other layer…we became fearful of people…we got used to being somewhat isolated.” (A, 13:15)

5. Social Losses: Friendship, Support, and Adaptation (14:36–18:29)

• Losing Community:
  • Lynn lost most of her pre-diagnosis social circle:
    • “I lost I think 90% of my social circle over about five years. They just…stopped contacting you…couldn’t be bothered with the adaptation…” (B, 14:36)
  • Now focuses on friends who truly support her: “The people I do have are properly good friends. They are really good friends…” (B, 15:13)
  • First needed constant help during her pregnancy (when she first ended up in a wheelchair).
• Grieving Social and Physical Loss:
  • Jodi: “There’s a lot of loss involved in the process…losing your abilities and use, losing your mobilities, but then also losing, you know, friends…” (A, 17:11)
  • Lynn prefers not to dwell on the sadness:
    • “I try not to dwell too much on the sad side of it…I could end up going down a rabbit hole of sort of depression and self-pity and I just have now decided not to do that.” (B, 18:14)

6. Finding Community: The MS Gym Story (18:48–23:59)

• Serendipitous Connection:
  • “The MS Gym found me.” Lynn recounts being discovered via her hospital Instagram post. (B, 18:53)
  • Discovers the program during a tough hospital delay and joins a free two-week boot camp.
• Immediate Impact:
  • “I am not a person who ever went to a gym…never exercised. I was lazy, should have done more, didn’t. I really liked it and instantly saw results.” (B, 21:09)
  • Finds support and amusement with Trevor, the upbeat MS Gym founder, despite initial skepticism.
  • “I thought the idea of a boot camp…is not going to be fun for me…But this is not going to be fun for me…I don’t know what it is. I instantly thought Trevor was hilarious and could so easily listen to him.” (B, 21:34)
• Resilience Through Setbacks:
  • After significant gains through the program, Lynn lost progress after eventually catching COVID, underscoring the fragility of advances for those living with MS.
    • “…every time I get to a point where I’m getting better, I catch some kind of cold or infection…But it’s still working slowly forward, but now it’s sort of crawling forward as opposed to stepping forward.” (B, 23:59)
  • Echoed by Jodi, referencing the metaphor of pushing a boulder up a hill—maintenance is as important as improvement.

7. Finding Joy & Future Goals: Baking and Dreaming Big (24:46–27:38)

• Baking as a New Passion:
  • MS medications and immune responses forced dietary changes—no gluten or dairy—so Lynn mastered gluten-free, dairy-free cupcakes.
    • “They tried to take cake and I said no. So I learned how to bake gluten and dairy free cupcakes…they’re good.” (B, 25:35)
    • Now considering turning it into a small business: “People who aren’t gluten and dairy free are buying them. They don’t seem to notice the difference. It could be a fun sideline. Keep me happy.” (B, 26:06)
• Biggest Motivation: Creating Memories for Her Daughter:
  • Dreams of conquering her anxiety and mobility challenges enough to take her daughter on her first holiday—a trip to Disneyland Paris via London for a family adventure.
    • “If I can get my mobility better and if I can get the anxiety under control…my wee girl is seven this year and she suddenly decided she wants to go to, well, Disneyland…that would be the ideal…That would be the big aim for me…” (B, 26:15)
• “Why” for Continuing the Fight:
  • Jodi reflects: “They talked a lot about finding your why, like why you do things…And, you know, the fact that your goal is so that your daughter can go see Disneyland in Paris...that shows what your why is.” (A, 27:38)

Notable Quotes & Memorable Moments

• “There was unexplained illnesses from when I was about six years old…nobody could understand what was wrong with me.” (B, 01:23)
• “Northern Ireland has one of the highest rates of MS…it’s got to do with the climate, apparently.” (B, 03:32)
• “They get so nervous about diagnosing until they see a pattern…I did find out later it is because a lot of people sued doctors because they got the wrong diagnosis.” (B, 06:56)
• “It’s easier probably to deal with the legs than it is to deal with the mental health, but I don’t think it’s uncommon…you get so used to living in a bubble that leaving that bubble becomes frightening.” (B, 12:56)
• “I lost I think 90% of my social circle over about five years. They just, they’re gone.” (B, 14:36)
• “The MS Gym found me…It was very, very strange.” (B, 18:53)
• “I had no intentions of paying for a membership at that point…but instantly…I would say within those two weeks…I really liked it and instantly saw results.” (B, 21:09)
• “Every time I get to a point where I’m getting better, I catch some kind of cold or infection…But it’s still working slowly forward…” (B, 23:59)
• “They tried to take cake and I said no.” (B, 25:35)
• “That [family trip] would be the big aim for me…But right now that’s the only big one for her.” (B, 27:10)

Timestamps for Important Segments

• [01:20] – Lynn’s earliest MS symptoms and diagnostic journey
• [03:32] – MS prevalence in Northern Ireland
• [07:58] – Challenges and changes in MS treatments
• [11:31] – Daily realities and impacts, mental health struggles
• [14:36] – Social losses and friendship after MS diagnosis
• [18:48] – How Lynn discovered the MS Gym
• [21:09] – Positive experiences and progress through MS Gym
• [24:46] – Baking as a new hobby and source of joy
• [26:15] – Hopes and goals: a magical family trip for her daughter

Summary Tone & Takeaways

The conversation is intimate, candid, and sprinkled with dry humor and resilience (hallmarks of Lynn’s attitude). Lynn is open about both the pain and adaptation resulting from MS, never sugarcoating the isolation or the magnitude of loss, but also demonstrating the power of embracing new passions, redefining goals, and connecting within an understanding community. The message is not simply about surviving MS—but continuously finding and redefining purpose, joy, and connection in the face of it.