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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