Beginning with a plan: Not long after I... - My MSAA Community

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Beginning with a plan

greaterexp
greaterexpCommunityAmbassador

Not long after I received my diagnosis in 2016, I began realizing that MS was crowding in on every thought and quickly becoming a major focus of my life. I never dreamed that could happen.

I literally sat down and wrote myself a letter. I mapped out my desires for how I wanted to respond to this illness and how I wanted to handle myself during the course of the disease.

One note I made to myself was the goal of remembering that my needs do not negate the needs of others.

For those who have had a little time to deal with this thing, what are some bits of wisdom you've gained that you would share with those just diagnosed? I'm always saddened when I see more and more people being diagnosed, but have been so grateful for the thoughtful reactions many have shared here.

My bit of advice is to write down a plan of how you want to handle your new life and its challenges.

What are your bits of wisdom/advice?

19 Replies
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I say to take it day by day. We never know what can happen one day to another day. I try not to think about my MS but it's hard.

Excellent foresight, greaterexp! What a great idea. And you’re absolutely right-everyone has needs

I find that thinking of or doing something for someone else helps keep me balanced and my self-focus in check. Even if I am unable to do more than send a note of encouragement, I find my mindset changes when I think of someone else

And because this disease is so unpredictable and varies from person to person and day to day, I am determined to remain hopeful. i do what I can today. And if I am unable to do it today? I am hopeful that tomorrow will be better!

And finally, newly diagnosed people have a tendency to fear the worst. At least I did! Don’t automatically think your course of this disease will resemble someone else’s. Be knowledgeable and learn what you can from reputable sites, people, etc. But try not to become overwhelmed with all the ‘what ifs.’ 💕

Great question. I am still trying to figure out same thing.

Hi greaterexp! Great idea! I too feared the worst when I was diagnosed in 1999. After the relief that it wasn't some kind of cancerous tumor went away, I started worrying about how long was I going to stay mobile and would I be able to still work. I was a full-time single Mom to a 9 year old at the time of diagnosis. Her father flaked on us so I had to do it all. Juggling my child, my demanding job and my commute didn't really leave me much time to think about M.S. which was probably a huge blessing in disguise!

Like Tutu, I've managed to remain hopeful. When an M.S. symptom gets in my way, I figure out a way around it and move on. I had to do this as single parent because there wasn't any one else there to pick up the slack. And now I live solo so I'm still finding ways around my symptoms to the best that I can.

The one thing I would do differently would be to stay active early on. I used M.S. as an excuse to not do things. I've become much more active since last summer and I feel better as a result. I wish I would have figured out sooner that sitting around a lot was detrimental.

I have to be careful not to say “no” to things that family/friends ask me to do with them, and say it is because of my MS if it isn’t. That isn’t fair to them. If I just do not want to go then I should say so. I guess I am saying “Do not blame everything on MS”.

Ya i do that sometimes too. Its bad but so easy....

Stay positive! Yeah, it will be things that make u mad. But walk away from it and come back to it later if possible. I personally joke with what I can or cannot do. And I talk to myself! Instead of being frustrated that I couldn't make it through entire grocery store. I tell myself, good job, you tried!

For newly diagnose people, I hope that the detection is early where they are able to possibly prevent physical/mental disabilities.

My #1 bit of wisdom is to find at least 1 thing to be thankful for everyday. Someday's it will be easy, others will feel nearly impossible. I also try to write them down in a thankful journal. That way if things are going bad I can look back on it and then I can be thankful for having the journal. You can be thankful for family, friends, a roof over your head, the ability to talk, to use your computer, the ability to enjoy the sunshine even if it is only out your window. You can be thankful for the ability to walk or roll as the case may be. You can be thankful for laughter and for tears. You can be thankful that there is a God/Heavenly Father who loves us and cares for us. Even if you are not religious you can be thankful for a higher power and for nature. We can all be thankful for being above ground.

I find when I concentrate on the good in my life MS doesn't seem to be as bad. Even though MS has taken my job from me I am thankful that I was able to work as long as I did.

My #2 bit of wisdom is to find something that you enjoy and find a way to participate in it in spite of MS.

#3 would be to do some kind of volunteer service. Volunteer to call the shut-ins and befriend them if you can not get out yourself. Send a note to someone just because. I have in the past picked a name out of the phone book and sent an anonymous note to the person telling them that someone is thinking about them and hopes they have a good day. I put no identifying info on it so they could note find me. Now a days you could send a letter to a soldier who doesn't receive mail. If you have a military post near you, you can ask them. You can also contact your local DAR (Daughters of the American Revolution) and they can point you in the right direction or add your letters to the care packages they send. Your local VA center can give you the same info. You could also volunteer to mentor a teenager in the foster care system. Teach them how to cook, do laundry, clean, etc so that when they age out they know how to take care of themselves.

There are so many things you can do when you have MS. You just have to look for them and by doing them you are beating MS into submission and not letting it completely control your life.

I will get off my soap box now. Sorry this is so long.

Jacqui

Great soap great ideas it takes one to know one even with a little fight with cancer in 2015 chemo radiation surgy more chemo ended up with a bag but you know what that aint nothin in my life compared to my icky ms since 2009 but you know what I got it made woke up today so I showed shaved and me and my dog went for ride in the rockys sunshine a little snow and some good prayer time not much but every day Yes there is a God. Me I got another day thats good enough for me thanks for the ideas Iknow one thing I need to do more

greaterexp
greaterexpCommunityAmbassador in reply to timothy228

You’ve been though so much, but your attitude and faith are fabulous. You’re in my prayers.

Thanks I sure will take the prayers and you in mine and I know they work too. Just tryin to get it right I know I am still here for a reason and you gave me some ideas to get busy and at least get out more it would be easy to poor me but you know what I am still able to walk and I didnt get my M.S. till I was 52 so in the big picture I got it made I hope to talk again have a very Merry and Holy Happy Easter p.s. nobody ever said life would be easy thats the test how do we handle it dont get me wrong some days are better than others I know you know what I mean.Do I need to throw my m.s. flag?

cljones
cljones in reply to Bygonelines

I totally agree. I volunteer with a jail ministry. I write to the girls and share uplifting thoughts to encourage them. Some of them tell me they appreciate someone writing to them because they have nobody. That gives my life purpose knowing I am helping someone. We all need to feel needed and useful. Keep trying.

Take each day as it comes but it's very hard to ignore my MS I really wish I could. Those are definitely pearls of wisdom hun xxxxx 😊😊😊😊

I like the idea of writing down what you want. I think that would make goals more "real". I must try that. Perhaps it will help me get out of this perpetual funk.

Listen to your body (and follow your neuro’s advice). I forced myself to continue working longer than I should have - I feel like I lost 2 years of my girls childhood. -Kris

greaterexp
greaterexpCommunityAmbassador in reply to kris1973

I think another thing we tend to do is miss out on doing things proactively. Physical therapists can give us plans for mild to moderate exercise that helps keep muscle stiffness at bay and can help us keep more muscle strength. Using medications appropriately can help reduce the problems with many symptoms. Asking about social services when needed could alleviate a lot of stress. I guess I tend to want to appear strong, so I usually don't ask for help, or I downplay the level of any symptom. It would be much wiser to get any available help; accepting help is NOT giving in. My husband has offered to hire some housekeeping help, but I stubbornly decline, and it's mainly a pride issue.

Raingrrl
Raingrrl in reply to greaterexp

I have trouble asking for and accepting help too greaterexp! I’m working on it though! As an example, at the holidays I asked my daughter and her boyfriend to do a couple of things for me that involved getting on a ladder. My wobbly balance means I need to stay off ladders. It felt great to get those things done without risking another fall.

A friend once told me that by accepting help we are blessing the helper. It allows the helper to give service and makes them feel good. Even if we (or someone else) are paying for the service we are blessing them by giving them money to help support themselves and their families. This has made it a bit easier to accept help when I need it. I used to have a really difficult time with it but remembering that I am blessing the helper has helped me to accept help easier.

greaterexp
greaterexpCommunityAmbassador in reply to Bygonelines

That's wonderful advice!

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