Helpful hints for new MSers?: Living life... - My MSAA Community

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Helpful hints for new MSers?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
16 Replies

Living life is hard... Living life with MS can be even harder... You live in a state of limbo, not knowing what's going to happen 1 min to the next. They say be strong.

If you're new to MS then it's probably something you're wrapping your head around. Hey, we get it... we have all been there.

What are some helpful hints and tips and advice for New MSers?

My biggest 1... Get a MS Neurologist!, 🤗💕🌠

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Jesmcd2 profile image
Jesmcd2
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16 Replies
erash profile image
erash

be curious but don’t judge or try to find all the reasons that your symptoms are better or worse from day to day. Look at the BIG picture.

Now if I’d only follow my own advice 🤪

NorasMom profile image
NorasMom in reply toerash

This! Don't psychoanalyze each symptom. Look instead at what you were doing earlier or yesterday and figure out if your actions led to this specific reaction. It might be time to adjust your activity level or limit it to a different time of year or even just a different time of day. Gauge your progression in years, or at the very least months. You will go through periods where you don't have good “days”, but you have good hours or minutes. Roll with your limitations. Learn to work around them; don't fight them.

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply toNorasMom

That's exactly how I handle MS-know your own limitations. I feel, for myself, that my best time to get anything done is the am after that All bets are off. 🤪😜😝

falalalala profile image
falalalala

For me, it helps to be grateful for even the smallest of things.

Tazmanian profile image
Tazmanian

try your best don't worry about being perfect

hairbrain4 profile image
hairbrain4

Everyday is a new adventure! Try to see the good things in life rather than focusing on the bad things happening to you. Be your own advocate, research meds that your doctors want to put you on before agreeing to take them.

falalalala profile image
falalalala in reply tohairbrain4

⬆️that too⬆️

CatsandCars profile image
CatsandCars

Be kind to yourself. Give yourself room to grieve the life you had before MS. Take care of yourself, and always hold the people and things you care about close to your heart. Find joy in simple things and celebrate the smallest success or achievement.

sashaming1 profile image
sashaming1

Get on a DMT right away and get MRIs to track MS progress.

in reply tosashaming1

Also, if the side effects scare know, 1., know the most serious ones are VERY rare (like, you’re more likely to die walking to the mailbox or driving to the pharmacy to get them and 2., read all of the side effects for what you take when you have a headache or muscle strain. There are a ton of possible side effects for those, too. We just never pay attention to them.

1575 profile image
1575

MUST CHANGE DIET this is tough but cannot articulate how important this is, we are what we eat and it affects everything with MS. I can recommend three cookbooks; Runners World Cookbook, Mediterranean Diet Cookbook there a bunch to choose from and I believe one of the MS organizations also has diet recommendations when you seriously change your diet good things start to happen but it is very difficult to get into the routine but I believe it does help slow the progression of MS dramatically.

Elizt3 profile image
Elizt3

try to exercise - I joined Planet Fitness about 10 years into MS. I wish I had joined earlier. I'm not a hero with my exercise, but it keeps me active, hooked in, and doing some type of activity.

Helpmeup profile image
Helpmeup

Keep moving! When I was diagnosed a hundred years ago, my doctor at the time said to pack it in, go home, and stop exercising. Worst advice ever!!! It took years to finally figure out that keeping those muscles moving is so very important. These days I try to exercise most every day, even if it's just stretching different muscles while sitting on the floor.

I also got some great advice from my therapist. It is important to take time to grieve and always try to focus on what I CAN do instead of what I CAN'T do. Attitude goes a long way living with this disease.

My advice is to find a therapist who is experienced in guiding people through chronic illness, and don’t be afraid to take mental health medication if you need. I emerged at the end of my first year of diagnosis actually a MORE mentally well person than I was pre diagnosis (after a LOT of crying and yelling.) That transition is due to a lot of therapy and a little Zoloft.

Scout4x4 profile image
Scout4x4

This site and the members has been 1 of my biggest psychological aid. I have seen an MS psychologist who helped a lot.I was diagnosed 13 years ago and I spent the first 8 years I would not accepted the fact I had this. Hurt my self trying to do things I used to be able to do.

You need to gain acceptance and get up everyday and work on having the best day you can.

Irishgirl76 profile image
Irishgirl76

Lift your spirits with knowledge and confidence! You got this girls!

Life is full of sssss? and roses 🌹.

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