Meet - Nin Sambhi

Staffordshire, United Kingdom

When were you diagnosed with MS? March 2022

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

When I was diagnosed with MS, it was like being hit by a truck, literally. I had never heard of Multiple Sclerosis before, so the first thing I did was Google it, and that was a mistake.

It took a while for the diagnosis to sink in, but once it did, I cried. Believe me, I cried a lot! Being a mum of two little girls, I was scared, overwhelmed, and worried. I automatically jumped to the future, and I became scared of the life I would live, and my ability to take care of my children.

MS has affected my life in so many ways most of which are positive, and it has presented many challenges too. I’ve had to change my job role at work, which has turned out to be a great positive. I also had to reduce my number of workdays too. So, ultimately I’ve had to adapt to slower-paced days and allow myself to rest.

I always joke that MS doesn’t suit my personality, and I still have that battle every day. I have to lean on others for support, physically and emotionally, which has been a real learning curve for me.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

Right, this list may be a little bit extensive… lol. I have numbness in various parts of my body, I suffer from the usual tingling and shooting pains. My body is very kind to me, it does not display all of my pains at the same time. One day, it will be my legs, and the next day, it might be my arms, so I can’t really complain!

I suffer from, eye shudders too. The ophthalmologist believes its nystagmus, and that my MS has progressed into my left eye. I also struggle with my speech sometimes, especially when I’m tired, which can be most of the time. But, out of all of the symptoms that I experience, fatigue is the hardest. Living a busy life, running a busy household, and trying to meet everyone’s needs, there is no time to be fatigued, and that’s the hardest symptom I find to manage.

But, I do manage, I have aids that support me when needed. I have a walking stick that I use so that I can continue with my day regardless of the pain. I also have adaptive items around the house just so that day-to-day tasks are a little bit more manageable for me.

But the best thing I do, in order to manage my symptoms, is truly listen to my body. I’ve amended my diet. I’ve adjusted my lifestyle to allow my symptoms to be manageable for me to live life to the fullest.

#3: Who/What has been your most important support system?

My husband has been my biggest advocate. He motivates me when I feel down, he encourages me when I lose faith and he researches every single hour of the day to make sure I’m doing all I can to manage my illness.

Although my husband️ is my greatest source of support and I know he always will be, there are certain things I never want to burden him with. So I reached out to other people who have MS, created a little community of support, and they have all been amazing. I have wonderful family and friends around me, who I know, if I need to, I can also lean on them.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I have a few accessories that are used throughout the day to make daily activities a lot more manageable. When required, I use a walking stick. I also have a stool in the shower to help with personal care needs, and adaptive utensils around the kitchen so I can be independent.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

Staying positive and motivated is definitely a challenge. Well, at least it was when I was first diagnosed. I required therapy to get me through some really low days and I needed time to mourn the life, I believed I had lost. However, through time, I soon realized to appreciate the little things, make the most of the moments that were presented to me, and be kind to myself.

I’m quite a positive person anyway, but when you are faced with a challenge, the challenge is to STAY positive. So I’m not too hard on myself. I allow myself to feel whatever emotion I need to, during that time, but I don’t dwell on it. I will feel, I will give myself time to process, and then I’ll get on with it.

My children and my husband keep me very motivated. They are the most natural motivators, I could ever have. The key for me is to just let myself be MYSELF!

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

Give yourself time. Allow yourself time to feel every emotion, and don’t deny yourself of anything. Make subtle and slow changes to your lifestyle, in order for them to be sustainable. Do your research, but also do what’s best for you. Everyone is so different. Being Asian, I felt a lot of stigma and shame when I was first diagnosed, this is very culturally driven. My advice to you would be...Just be you! Don’t shy away from speaking the truth and don’t shy away from sharing how you feel. Individuals spend so much time pretending that everything is okay. That everything is perfect. But it’s supportive, and very helpful when people are truly honest. I made a promise to myself when I was first diagnosed, to always be truthful. To always share openly how I am feeling and what I am going through. Which, culturally isn’t usually expected or heard of today. But my aim was to stop the stigma, break the silence and speak. So my advice to you would be, to SPEAK!

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

In order to open a platform to speak openly, and to share my story, I created an Instagram account known as @invisible_load_of_life. This platform has allowed me to not only share my story, but also support others in need. My account created an area to talk openly about my experiences, how I was feeling and provide comfort and motivation to others. It’s an area where individuals can ask questions, find something that they can relate to, and also feel like they are not alone.

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Meet - Charlotte Anderson

Georgia, USA

When were you diagnosed with MS? March 2016

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

I will never forget my neurologist looking me in my eyes and telling me “You have MS”. I was a little shocked. I was very confused and started worrying about my future. I felt empty. MS has affected my life in many different ways, but nothing is consistent. Examples are cognitive fog, memory loss, mobility issues, difficulty multitasking, depression, anxiety, and many other symptoms and issues. I call MS the disease of question. Nothing about the disease is the same every day or the same for anyone with MS. I feel MS is a mixture of different diseases and disorders and that is why sometimes we see different specialists for different issues. I wish we could receive a text notification or an email every morning explaining what our day will be like and what symptoms we will experience. I try to control my MS by working out as much as I can, although sometimes my symptoms do not allow me to work out. I do feel you have to keep the body moving as much as you can so the disease does not win. I’m a fighter and I’m determined to win this battle.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

Currently, I am dealing with Cognitive Fog, which causes memory loss and loss of words. I take my time in everything I do to keep myself safe and stress free.

#3: Who/What has been your most important support system?

My children, my family, and my MS support group.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I only have mobility issues in the fall/winter months. I use a cane and a rollator. Cold weather is my trigger for pain and spasms in my legs and feet.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

My faith is strong. When I am feeling sad, I tell myself God chose me and I keep that near and dear to my heart. I also remind myself that it is about the small wins. I can’t do anything about what I am unable to control. I have learned to take small steps for each issue or change to my symptoms. No need to go from step one to step ten. I workout for self-care. It’s a great way to release stress and I feel great after. Even on the days I’m in pain, I try and do something.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

MS is in us and it is not who we are. No need to worry about what you cannot control. Just remember we are stronger than most. Take small 10-15 mins breaks throughout your day. Give yourself grace with everything you go through, because you are strong and a fighter.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

I have not. I would like to start a support group. At the present time, I am trying to navigate my cognitive struggles, which makes it a little hard to plan and focus. One day soon I know I will accomplish that goal. It is important to have others with MS to talk to about symptoms, feelings, and changes. No one understands better what you are feeling like or going through than another MS’er.

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Meet - Melvia Rogers

Florida, USA

When were you diagnosed with MS? May 2017

What type of MS do you have? Primary-Progressive MS (PPMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

When I first started to experience symptoms of MS, I didn't know what was going on. The first neurologist I saw refused to diagnose me with MS. He believed it was a disease that only affected white women. I was then referred to multiple doctors who thought I had Lupus. It took five months of tests and bloodwork before I finally received an MS diagnosis.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

My symptoms are hard to identify sometimes. I have constant pain on my left side, in my hip, and leg calf area. However, I was also diagnosed last year in 2022 with epidermal growth factor receptor (EGFR) Small Cell cancer. This has affected my lungs, my left arm, and the left side of my body, including the hip and leg. Every 4 weeks, I receive a bone infusion. Unfortunately, the major side effects are my bones ache and sometimes, it's hard to walk. I was told medically there was no connection between the two diseases. But I still wonder if that's true or not. So I'm saying some days it's hard to figure out where the pain is coming from. Is the pain MS-related or is the pain coming from the bone infusion?

#3: Who/What has been your most important support system?

My support system has always been my family... my husband, kids, mom, and siblings. But now my family has grown to include my Alpha Eta Phi MS sorority sisters. My sorority sisters are such an amazing group of ladies. We share similar journeys and we keep each other uplifted.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I don't use any walking accessories.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I stay positive and motivated by starting each day with prayer and worship before work. I try to keep peaceful thoughts around me. Self-care is very important to me. Self-care keeps your confidence and esteem up. It helps me stay positive and keeps my personal appearance on track. I always remind myself of the slogan "I have MS, MS doesn't have me."

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

My advice is not to believe everything you read on some of the group social media sites. They can be very depressing. Keep positive people around you, and do your own research! Some days can be more challenging than others, but always remember Philippians 4:13 "I can do all things through Christ who strengtheneth me" and "I have MS, but MS doesn't have me"! Most importantly..."I am not a quitter"!

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

Although I don't have a specific mission or business, I make it a point to raise awareness about Multiple Sclerosis.

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Leave a comment, and share your experience. We would love to hear from you!