What advice would you pass along?

[StillOkay]

What is the best advice you'd pass on to others, either those starting on their MS journey, or those who've lived with it for a while?

A while ago NeuroNixedCraig shared his thoughts and put me on the path of living life on my own terms. That advice is the reason my list starts with:
Don't apologize and don't hesitate to ask for help.

Next on the list:
Don't put things off. If I'd learned that earlier myself I wouldn't have to think "why didn't I do that while I still could..." quite as much.

Be prepared for the future, without letting MS run your life. Can be as simple as keeping a symptom log in case you ever have to apply for LTD, organizing your house so it's accessible before you need it to be, saving for a rainy day.

This one is hard sometimes but worth a try:
Remember that you're still the person you used to be - you're you with MS, but you're still you.

How about you - what's your best advice?

[RoyaleMSer]

My advice? Not to swear ALL of the small stuff. Some things I just have no control over.

[StillOkay]

I'd like to clarify what I meant by "don't apologize" - just realized it makes me seem a bit mean!

What I was really saying is that I used to say things to people like "I'm sorry I had to cancel our plans" or "I'm sorry for not being able to help you." Now I don't feel the need to apologize like that - my intentions are good, it's just my body that won't cooperate.

[happy23]

Nice post

This topic has a positive feeling....and I liked what you said Stillokay.

My advise would be to not accept another persons truth as your truth. Just because they have rapidly declined does not mean you will. Although there are a ton of reports and statistics that try to put us into categories of gloom and doom, it does not mean you will fall into that statistic or fit that profile.

Make your days count, tell others what they mean to you, learn that it is ok to ask for help.....but never, ever, give up by letting MS win.

You're ok, not the same physically, but you're still ok.

[terie-tk]

My advice would be

along the lines with the original poster-->
'don't put things off ', but because with MS you don't get any ' do overs '. ( thanks to someone else who pointed that out in another post on this board )

Don't wait until it's too late to exercise, or change your diet or other lifestyle issues, or be on the DMD medications.(Controversial subject,JMO)... Do it now. Do what YOU can do to fight this.Because you can't turn back the clock and undo the damage .

[Shashi]

First my advice for those in limbo, especially if you don't have lesions on your MRIs, is don't expect a quick diagnosis. It can take years to find out what's going on, unless you have a really sharp doctor who is on the ball and caring enough to want to get answers as soon as possible (and those are rare.) Also, be sure that your doctor tests for all of the MS mimics, including Sjogren's syndrome and Celiac disease/gluten sensitivity.

And for everyone who suffers from fatigue, give 1,000-2,000 mg of acetyl L-carnitine and 200 mg of alpha lipoic acid every morning a try. They're natural anti-oxidants that your body needs, but they can make a huge difference in fatigue levels for many people. Do a search here on this site or Google them for more information.

And last, the best piece of advice anyone has ever given me is to not forget to enjoy life! It passes so quickly and it's so easy to get caught up in how we feel and the problems that we have, but enjoy those moments that you can. I decided last year that if I'm going to feel horrible anyway, I'd rather feel horrible being out enjoying myself with family and friends rather than sitting at home feeling horrible all by myself. So, don't forget to LIVE!!!

Hugs to all,

Lisa

[BJG55]

My two cents

First, I agree with what's been said by others. I wanted to do as much as possible with travel, etc. since I didn't know about the future. My DH didn't see the urgency. Now, he says he wishes we had spent more time hiking, etc.

As for advice, don't try to worry about how you think your disease will progress; no matter what you think, the course of the disease is often different (neither good or bad, just different).

Also, try not to compare yourself to others with or without MS. I'm still working on this issue, but I try not to beat myself up about the fact that I can't do certain yoga poses; or ride my bicycle as far or fast, etc.

Be nice to yourself.

[tellnhelen]

HAD to add

all good advice here...I can relate to all of it

Here's mine: activity builds confidence, EXERCISE, keep moving, take vitamins, drink alkaline water (or at least lots of filtered water); consider taking a DMD to slow progression; adjust your work situation (we don't have to be rocket scientist), pay attention to what your body is saying

Spend time with friends and family; build relationships that will last

I don't eat red meat; some are gluten free. If you want experiement with changes in your diet. Discover if food affects how you feel

Pray...

[Seasha]

This are all so wonderfully important and beneficial. Thank you for this post StillOkay! I would like to add:

Educate yourself all you can about MS so you in turn can educate others and especially those who love and care for you.

Find a support team - be it family, doctors, friends, etc. and don't be afraid to ask for help.

Try to keep a sense of humor, however hard that may be at times. There will be peaks and valleys on your journey, just like everyone else's. Allow all the emotions to be felt (hurt, frustration, confusion, anger, etc) They need to be expressed, not suppressed.

I have always felt that to experience adversity only makes one stronger.

Eat well, love well, breathe deep and concentrate on what you CAN do!

[sunshine008]

i love this thread!

awesome!!

My advice, although a newbie with the official dx...... yet we kinda knew for several years in my mind that is! lol and my legs....

enjoy each day, even when the chaos hits and things aren't what you would want them to be, just enjoy what you have before you.

It takes some mental work, yet if you do the work ms can really put things into a perspective that you have never had before. It can make you see that life has so much to offer, it truly is a canvas and you are the artist.

That ms doesn't have you, you have ms. Ms just means there will be some bumps in the road.... and yes the road will still be long. Through those bumps you will be deverted on occassion to some wonderful little journeys', new ppl, etc. that had you not had ms you would never of experienced.

Most of all love yourself a whole lot all the time! be your own best friend and be patient with your body.

Most of all try to remember our bodies are just our vessels we travel through this life with. the "real" stuff is what's inside our hearts, our lesioned brains lol, and our emotions.

next person?
again love this thread...

[Luv2Worship]

I love this post!! I always say "I have MS but it doesn't have me" that puts me in control of this craziness. Now, this doesn't mean that MS isn't constantly trying to overthrow my body but it helps me be in control of how I respond to it!!

Look at ALL of your treatment options, listen to what others have to say but always remember, this is your life, your body...you should take the info in, discuss EVERYTHING with your family, friends, dr & then make a decision based on whats best for YOU!!

Exercise!!! You don't have to belong to a gym to get fit!! DVD's, exercise bands even soup cans. Just make it your goal to move something everyday!! I'm in the best shape of my life & lost 60lbs in the middle of the worst exacerbation I've had to date!

[DianeD]

Live the life you have

MS is such a weird and unpredictable disease. One persons MS is not like anothers, though they share symptoms at times, they might not be as intense.

Do not compare yourself to anyone; you are unique. Your reality is yours alone.

Don't jump to conclusions. Every itch, twitch and new feeling is not always MS. Sadly (as if MS is not enough) you may still have another disease process happening. I always think that since I have MS I cannot possibly have any thing else to worry about . WRONG! Since MS is beating up the immune system you may be more susceptible!

At times I've allowed myself to feel jealous because another person with MS is doing so well, seemingly not experiencing my level of misery. Well, I've had to realize that in everything in life you can make comparisons that won't be favorable to you. It's important to 'know' MS, particularly yours. Don't listen to those who want to report how they know someone with MS who is running miles, climbing mountains and biking as well as a professional athelete. You, on the other hand can barely get out of bed and even then you may fall asleep on the sofa.

Thing is that our brains are like our fingerprints and no two are alike. The lesion can be anywhere and change too.

So be the best you that you can be. Keep a brochure at hand that describes how MS can be different in each person. You don't have to give them out but have them handy. A good friend will want to be informed. Those that don't care to understand simply won't.

Check in at MS World often and you will find support.

Diane

[StillOkay]

Thanks everyone, for sharing your excellent advice.

This is a thread I know I'll come back and read again when I'm in need of some positive reinforcement and some practical ways to deal with what MS throws at me.