MSers Stories
Here are examples of other MSer’s stories
Dita’s MS Story
Dita wrote her story on a piece of paper and stuck it on her fridge.
Your life:
What are you interested in?
Interested in seeing friends, dog walking, yoga and volunteering with Shift. Love living in London and being able to explore.
What would you like to do more of?
Do more physical things and stop being afraid
Who is in your support network?
Boyfriend, family friends, Shift.ms, UCLH
What matters most to you in your daily life?
What matters most is that I remain upbeat about my MS, don’t let it hold me back and that I prove to myself I can do it. Learning to have ‘ME’ time is key.
Your MS:
Does your MS stop you doing anything you want to?
Stops me from having confidence with completing/ joining in physical activities- walking up large hills or running
How does your MS affect you?
Its affects me by making me have low energy moments, I now feel like my sleep is really impacted, both struggling to get to sleep and struggling to get out of bed. Writing for long periods of time. Sometime completing daily routines tire me out.
How has your MS affected you in the last week/month/year?
Since moving to London I’ve felt more overwhelmed about things, including MS. My emotional health hasn’t been great. MS London team at UCLH have helped me recognise that. Had 1st official relapse in May which was scarey, but support network helped me.
How do you feel about living with MS?
Living with MS is fine, it could be worse. I do sometimes have down days and think why me.
How do you measure the impact of MS on your daily life?
Recent MRI results were incredibly positive.
Medications:
Beta Interferon
Jo’s MS story
Jo wrote her story on her iPad and emailed it to herself.
Your life:
What does a good day look like for you?
Having enough energy to get through it, not being aware of numbness or tingling.
What are you interested in?
Continuing my work and social life, seeing bands, friends and different places I’ve never visited before. Basically just living life and taking advantage as much as I can in the good times.
What would you like to do more of?
Things I’ve not had a chance to do that I want to do.
Who is in your support network?
My nurse at Royal London, friends who know about the condition, my family back home in Glasgow.
What matters most to you in your daily life?
Living as much as I can, not letting something like MS control me or my life as much as I have a handle on it.
Your MS:
How does your MS affect you?
From fatigue and pins and needles -> complete loss of feeling/numbness
Does your MS stop you doing anything you want to?
Very little at the moment, largely the problems I have are down to not having the
energy to do things I took for granted in life. But when it does affect me, it can be
pretty debilitating fatigue.
How do you feel about living with MS?
At first the concept was scary, but with DMDs it’s become a little niggle rather than a big deal. I probably don’t complain as much as I should about the small things actually, but I feel like I’ve gotten away quite happily of late.
How do you measure the impact of MS on your daily life?
Not nearly as much as I should! I do note when certain things happen, through my phone/social media.
Medication:
Tecfidera
Robert’s MS story
Robert wrote his story in notes on his smart phone, which he can update.
Your life:
What does a good day look like for you?
I’ve forgotten as fluctuates too much, hard to pinpoint
What are you interested in?
Learning more in many different fields of life although difficult now
What would you like to do more of?
Be more active and social
Who is in your support network?
Nurses and the odd person who may take interest
What matters most to you in your daily life?
Getting something done which I feel as an achievement
Your MS:
Does your MS stop you doing anything you want to?
Studying things I want, going out for leisure and sport activities
How does your MS affect you?
Makes me tired, lost and confused
How do you feel about living with MS?
Everyday is a new day and optimism being the best thing in impossible situations
How do you measure the impact of MS on your daily life?
Very brief mental notes
Medications:
Solifenacin, Vitamin D, Fosamax and Tysabri