Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am deeply honoured to share Sam’s story today. She reached out to be part of this project after discovering our TikTok, and we sat down for a conversation in April. During our hour-long chat, Samantha opened up about the tremendous challenges she faced following her diagnosis with Multiple Sclerosis (MS) and her subsequent Stem Cell Transplant. Yet, she also spoke about the immense growth and understanding she has gained along the way. I left our discussion feeling profoundly moved and inspired by her courage and unwavering positive outlook.
Writing Samantha's story has been a journey filled with both depth and inspiration. It is not merely about surviving MS, but about thriving despite it, redefining what it means to live a truly fulfilling life. Her story underscores that while MS is a part of her life, it does not define her. Samantha continues to pursue her passions, support others, and find profound meaning in her experiences. I hope it inspires and resonates with you as deeply as it has with me!" - Ellie Howe, creator and author of 'A Note of Hope.'
In 2015, Samantha's world shifted drastically with a diagnosis that many may have heard of, but few understand fully: Multiple Sclerosis (MS). MS is a chronic condition that attacks the central nervous system (CNS), which includes the brain, spinal cord, and optic nerves. The progress, severity, and specific symptoms of MS in any one person cannot be predicted, and this uncertainty adds to the burden of those living with the disease. Samantha's journey to this diagnosis, however, began long before the official confirmation, marked by a series of mysterious and debilitating symptoms that puzzled both her and her doctors.
The first signs were subtle yet concerning: numbness and altered sensations in her legs, gradually worsening over three months. "It got to the point where I ended up in the hospital, triggering the sort of domino effect of the diagnosis," she explains.
Initially, Samantha considered herself fortunate for the swift diagnosis. "I was one of the luckier ones," she thought, appreciating the relatively quick identification of her condition. However, as she looked back, she realised her health issues had started much earlier. "I remember having problems with my right hand; it went numb, and I couldn't hold a pen," she says, highlighting how she also experienced extreme fatigue, muscle weakness, and difficulty with coordination.
Doctors initially attributed her symptoms to carpal tunnel syndrome or even repetitive strain injury from her job as a bank cashier, where she spent her days counting and handling money for customers.
"They came up with all kinds of explanations, but nothing fit. It’s only now I look back and think: ‘that was MS’.”
MS is characterised by the immune system attacking the protective sheath (myelin) that covers nerve fibres, causing communication problems between the brain and the rest of the body. Eventually, the disease can cause the nerves to deteriorate or become permanently damaged. The signs and symptoms vary widely depending on the extent of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms.
Samantha has relapsing-remitting MS, the most common form of the disease, which is characterised by periods of new or increasing symptoms (relapses) followed by periods of partial or complete recovery (remissions). During remission, all symptoms may disappear, or some may continue and become permanent.
"I would just give up because my symptoms would get better again," Samantha admits. But when the symptoms progressed to her legs, the situation became impossible to ignore. "I lost the ability to walk. It was a lot more apparent then."
The diagnosis process itself was daunting. After collapsing and being unable to get back up, she was rushed to the hospital. "They were really good; I had a lumbar puncture, an MRI, and loads of tests that week. It was spotted straightaway," Samantha recalls, though the memory remains a blur due to the overwhelming nature of the experience.
Her lack of knowledge about MS at the time of diagnosis was another hurdle. "I had no idea what it was. Even pronouncing 'multiple sclerosis' was a challenge," she admits. A common misconception she faced was that MS was hereditary. "We thought it couldn't be MS because it doesn't run in the family," she says, highlighting a widespread misunderstanding about the disease. While genetics can play a role in MS, with a slightly higher risk if a family member has the disease, it is not directly inherited.
"When people asked what was wrong, I didn't know what to say.”
Reflecting on her nine years since diagnosis, Samantha acknowledges the emotional toll it took. She mostly recalls the period of gradual decline and how she struggled to explain her condition to others.
She often resorted to fabrications to avoid uncomfortable conversations about her impaired mobility, "I'd make up excuses like, 'Oh, I hurt my ankle,' or 'My shoe broke.' It was easier than admitting I didn't know why I couldn't walk," she says.
Despite the lingering pain, Samantha has now reached a place of acceptance. Yet, the memory of the efforts her past self took to hide her symptoms lingers. She recounts a particularly painful moment when a drunken stranger mocked her inability to walk, mistaking her for being intoxicated and asking her how many she'd had to drink. "I had only had Coca-Cola," she recalls. "I just couldn't walk."
To find out more about MS, click the link below:
Multiple Sclerosis (MS)
Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
According to the National Multiple Sclerosis Society, approximately 2.9 million people worldwide are currently living with Multiple Sclerosis (MS). While there is currently no cure for MS, treatments are available to help manage symptoms, modify the course of the disease, and enhance the quality of life for those affected.
After her diagnosis, Samantha was promptly scheduled for consultations at a specialist hospital and informed about potential medications. "When I was in the hospital, they gave me an infusion of steroids to help with the inflammation it had caused, and it made me feel better," she recalls. "I could walk again. So, I think my first year, or at least the first six months after I received the diagnosis, wasn't that scary for me."
With no prior knowledge or personal stories to influence her perception, Samantha placed her complete trust in the medical professionals, and she offers a crucial piece of advice to those newly diagnosed with MS: do not google.
"Do not Google it because you'll find horror stories about its progression,” she emphasises, “Medicine has come so far that it's not worth scaring yourself with 'what ifs.' I've always adopted an 'in the moment' attitude with it, and I think it's because you have to. Those stories are out there, but they're not the full picture."
For the first year after her diagnosis, Samantha’s life continued almost normally, albeit with some adjustments.
"I started medication, moved out of my family home and in with my partner, and even got a promotion at work," she recalls. "Things almost went back to normal for me. So, I thought, 'What's wrong? It's fixed now.'"
However, Samantha quickly learned the importance of tempering her expectations. Though she can't recall the exact dates, the pattern of her relapses has been a constant since her diagnosis in 2015. Each relapse would set her back, but she often managed to recover about 85% each time. Over the years, the cumulative effect of that remaining 15% of unrecovered functionality began to take its toll.
At one point, she even had to give up a promotion due to the physical demands it entailed, "It was a lot of going out to clients' premises and walking around, and I was having bladder problems, which made me feel uncomfortable," she explains.
However, she now chooses to view this decision positively. "But I choose not to look at it like that. The other side of it is I hated it. I didn't enjoy it, so I stepped down, effectively, still within the same company, to work from home. I'm more of a 'work to live' person. So, I'm sure I would have done that anyway, regardless of whether I could manage it."
Living with any chronic condition can make it challenging not to dwell on the 'what ifs'. Samantha acknowledges the difficulty of not comparing her current life to what it could have been, but she emphasises the perspective she has gained from her health journey.
"It puts things into perspective, including what you value, what's important, and what you want. I was like, why am I pushing myself to the limits for something I do not enjoy?"
Ultimately, Samantha has come to understand that her journey, though fraught with challenges, has also brought her clarity and a renewed sense of what truly matters.
MS is notoriously varied in its effects, with symptoms that can affect any part of the body due to nerve damage. For Samantha, the primary issues have always been related to mobility, such as numbness in her legs and hands. Over the years, she tried four different disease-modifying therapies (DMTs) - starting with Tecfidera, a twice-daily tablet, followed by Gilenya, another tablet. She then moved on to Lemtrada, which involved hospital infusions over two years, and later Ocrevus, a six-monthly infusion. Each treatment came with its own set of challenges and varying degrees of effectiveness, but none of them provided lasting relief, as MRI scans showed active lesions and new activity in her brain. This led to her undergoing a stem cell transplant last year, a decision that came after much consideration and the failure of multiple treatments.
"The stem cell transplant was a big deal," Samantha admits. "I was in hospital for a month, and it was a lot to go through, but I went into it knowing it would put my life on pause for a while." The transplant process, which involved chemotherapy, was intense and challenging. "My short hair is chemo regrowth," she shares, highlighting the impact of the treatment on her physically.
The decision to undergo the stem cell transplant came after exhausting other options. Given the time-sensitive nature of MS progression, Samantha and her doctors decided not to waste any more time on treatments that weren't yielding results. Online, she felt compelled to display excitement and gratitude, aware that many people with MS want it but don't qualify for it. But internally, she was filled with fear and anxiety.
“It was the scariest and hardest thing I've ever been through.”
Explaining the transplant process, Samantha notes that her journey began with an outpatient chemotherapy infusion, which initially felt no different from other infusions she had received. However, the subsequent stage involved self-injections of a growth factor to mobilise new stem cells from her bone marrow, leading to significant bone pain.
"It gave me so much bone pain because it was coming out of the bone marrow," she says.
Following the self-injections, Samantha underwent a stem cell harvest involving a machine that filtered stem cells from her blood. The harvested cells were frozen until her hospital admission for the actual transplant. She was then admitted to the hospital for five days of intensive chemotherapy and another drug called ATG to wipe out her immune system completely. "It was so weird seeing the blood results. It was like, you have zero white blood cells, zero red blood cells, and zero platelets," she shares.
Her frozen stem cells were reintroduced on the sixth day, marking a significant milestone in the treatment. "They say it's like your birthday because you get a brand-new immune system," Samantha says, humorously noting that she now considers herself a one-year-old rather than her actual age. She stayed in the hospital until her immune system was strong enough for her to go home and isolate.
Samantha's journey through her stem cell transplant and recovery has been fraught with challenges, particularly surrounding health anxiety. She describes how difficult it was to transition from constant medical support in the hospital to managing on her own at home. "I struggled a lot last year with health anxiety," she confesses. The initial three months were particularly nerve-wracking, as she constantly feared complications and over-monitored her health, which only exacerbated her anxiety. Despite these challenges, she had a relatively good summer, likely aided by the lingering effects of steroids, which helped her rebuild her strength. However, a cold in December set her back, and she has been rebuilding since then.
To cope with her anxiety, Samantha has found mindfulness helpful, but not in the traditional sense. Rather than meditation, which she finds counterproductive when it requires body scanning, she focuses on activities that genuinely distract her and bring joy. "I'm just going to watch my favourite TV show," she says, explaining that engaging in enjoyable activities helps her manage anxiety by taking her mind off her worries.
Despite these minor setbacks, Samantha's resilience and ability to bounce back have been remarkable. However, she is realistic about the limitations, "It can't reverse the damage that's done," she explains; instead, the goal of the treatment is to halt any further progression of MS, not to cure it. This means she still deals with the residual damage and symptoms, which can flare up when she's tired or unwell. Nonetheless, she feels she's managing better overall and is optimistic about her progress, acknowledging that it's still in the early days of recovery.
Samantha notes that while her health may not always improve, her ability to adapt and find new joys in life will.
"Things will get better. Not necessarily your health, but you'll learn to adapt. You'll find new things you love."
Samantha's greatest source of joy in her journey comes from her partner, whose unwavering support and love have been a cornerstone of her strength. Their relationship spans thirteen years, a significant period during which they have grown together, faced challenges, and celebrated countless memories. This journey through Samantha's diagnosis and treatment has been a shared one. Her partner has not only learned about MS with her but has been a constant support, navigating every twist and turn alongside her.
"He's just amazing with it all," Samantha continues, emphasising how his actions have consistently demonstrated his unwavering support. Despite the physical demands and the responsibilities that have come with Samantha's condition, their relationship has remained remarkably unchanged. "I'm still Sam," she says, "I don't get treated any different." This sentiment is crucial to Samantha. It reassures her that while her partner does much to help with her physical needs, their bond is rooted in love and equality, not pity or obligation.
Their favourite moments together are the simplest ones. "Just spending time together, even doing nothing, watching TV, having a laugh," Samantha highlights that these ordinary moments, filled with laughter and shared silence, are what she treasures the most.
However, she also highlights how she has struggled with guilt and inadequacy, wondering if she is too much to handle. "I've told him I feel like a burden," she admits. But his response is always reassuring. "He'll say, 'Well, you do this for us.' Just because you don't do some of the physical stuff doesn't mean you don't contribute in other ways." He emphasises that their relationship is a partnership, where every financial, emotional, or practical contribution is valued equally.
This perspective has helped Samantha see beyond her fears and insecurities. It's not just about his tasks but about the love and respect underpinning their relationship. "There's so much more to us than what I can or can't do," she says, reflecting on how their bond has only strengthened through these challenges.
While some people are great with words, he excels in action. He doesn't need to be asked to help; his instinct is to do. "He doesn't have that thing in his brain where he's like, 'Oh, I need to do this for her because she's sick.' He does it." This natural inclination to support, without making Samantha feel like a burden is a testament to his character.
Samantha says that her biggest achievement stands as her work with the charity MS Together, a testament to her dedication, resilience, and passion for making a difference. This charity, specifically designed for people aged 18 to 35, has profoundly impacted her life.
When Samantha first joined MS Together in 2021, it was only a small support group on Facebook. Over the years, it has grown exponentially and is now a registered charity. Her role has been pivotal in this growth; she manages all their social media and communication channels, including Instagram and TikTok. Through her dedicated creation and sharing of content, Samantha ensures that people living with MS don't feel isolated. Her work has been instrumental in raising awareness and fostering a sense of community among those affected by MS. This effort—supporting the transformation of MS Together from a small online group into a recognised charity—stands as her most significant achievement.
Excitingly, Samantha has now been offered a trustee position, an honour that underscores her commitment and the impact she has made within the community.
MS Together now spans the entire UK, boasting a vibrant online community and numerous sub-regional groups facilitating local meetups. With over 1,500 members, they have established subgroups across Scotland, Wales, Ireland, and London, totalling around 12 regional subgroups. While much of the interaction occurs online, the in-person meetups are particularly special. These gatherings provide a space for members to connect with others who truly understand their experiences, making them invaluable, especially for younger people navigating the complexities of education, starting jobs, or dealing with unemployment due to health challenges.
What sets MS Together apart is its balance between support and realism. Unlike some groups that might pressure young people with toxic positivity, MS Together acknowledges the diverse experiences within the community. They provide genuine support to young individuals who cannot work due to their health issues, helping them connect with others in similar situations and alleviating feelings of isolation or inadequacy. This inclusive and uplifting approach has made MS Together a remarkable and vital community.
Providing services of advice and support to people affected by MS, with a particular focus on those living with MS aged 18-35. Registered Charity in the UK.
Samantha's involvement in this organisation has enriched her life and made a profound difference in the lives of many others. Her ability to turn her challenges into a force for good and help create a supportive and understanding community makes her work with MS Together her most significant and impactful achievement.
It’s clear that Samantha’s journey has been marked by incredible challenges and remarkable resilience. Her story, from grappling with the initial diagnosis of MS to undergoing a life-changing stem cell transplant, is a testament to her strength and determination.
Reflecting on her path, Samantha shares, “It’s tough, but I think I probably say that, like I said before, things will get better, and you will adapt. Even if you feel like your health isn’t improving, that’s okay, and it’s okay to feel however you feel. There’s nothing worse if you’re in a bad place than someone just saying to you, ‘Things will get better, don’t be sad, just be happy.’ No, feel how you need to feel. But try to keep in the back of your mind that that won’t last forever. Things will get better; you will learn to adapt. You will find joy again in things; eventually, it’ll hopefully be something in the back of your mind.”
Samantha emphasises the importance of acknowledging one’s feelings and allowing oneself the space to experience them. She recounts how, at times, her condition consumed her thoughts entirely. Yet, she has reached a point where she wants to show people that living with MS means precisely that—living.
“I want to show people that living with MS is precisely like that—living my life. It’s not all about my health.”
Thank you Samantha for sharing your inspiring story for the 'A Note of Hope' project.
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