Hi I’m new here : Hi my name is Rhea... - My MSAA Community

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Hi I’m new here

Babslover profile image
21 Replies

Hi my name is Rhea. Getting on the website is new to me. Just want to know what is keeping you motivated with this difficult disease? I had it for about 18 years. The cold weather for me is getting worse, I feel like I walk like Frankenstein - stiff and tight. In the summer heat I get weak. Does anyone else have these also?

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Babslover profile image
Babslover
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21 Replies
jimeka profile image
jimeka

Babslover hi and welcome Rhea, I think a lot of us on here are suffering with the affects of the cold. I like your description of walking like Frankenstein it just about sums it up. I find that I only have to open the door and the cold air immediately affects my leg. It goes stiff, locks up, and depending how cold gets very painful 😖. Then we have the heat? I don't know which is worst, we all seem to be ffected by one or the other or both. Blessings Jimeka 🦋 🌈 🍫

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Babslover welcome! Got to love to hate the weather! I was just saying to someone about finding that 'perfect ' temp. Mine is 72* 😄

I hate winter! It's pretty!😀 But it hurts! And I am happily medicated when it's to bad.😊

Where are you from?

Jes 🌠

MS_Indestructible profile image
MS_Indestructible in reply to Jesmcd2

ha ha ha, me too 72-75*F to about 78 is okay, but + sucks

Babslover profile image
Babslover in reply to MS_Indestructible

I can do 72 to 75 but as long is the humidity is down I am good to go . Not that’s all walking but my husband got me a buzz around and it’s wonderful I can go visit neighbors I can go down the street I just have to wait for the nice weather to come back .

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Babslover

Where are you from Babslover ? I think we are ALL counting down for spring!!😀

Jes 🌠

Babslover profile image
Babslover in reply to Jesmcd2

I’m from Metro Detroit .

Jbahnan profile image
Jbahnan in reply to Babslover

Nice, I'm in walled lake you?

Babslover profile image
Babslover in reply to Jbahnan

Waterford

dx in 2007 with RRMS but actually had SPMS. I took many DMTs to no avail. There was no treatment for SPMS so my doctor did not want to change my dx, felt like some help was better than none. I'm now on a treatment that is working well.Welcome to the group. I still have to "formerly" introduce myself. I joined in August 2016 but was not active till recently.

I believe I have had RRMS most all my life at least since high school. Once I learned more about MS, could go back to events in my life where I believe I had relapses.

SO, what is keeping me motivated? Life, Choice, Happiness, The benefit of being me.

Trying to keep it simple, each of the four things above are very deep subjects. The VERB for three of the above mentioned is Choice. I can't have a life, happiness or having the benefit of being me, without making the choice to have them.

Everyone finds a path, their path or they don't. MS is a nasty, hideous and ruthless predator upon its victims. I however, choose to make the most of what the MS has not taken from me.

Anyway, howd'ys are in order. Stick around and read the posts and replies. Lots of good stuff here.

Babslover profile image
Babslover in reply to MS_Indestructible

I like your positive thoughts . That’s what’s keeping me going . I really think that reading information of these texts from different people or another positive way to help me going also. At different times I have to tell myself think of one thing so you get it done then you can move onto your next project . I do try to do what I used to do but I realize I cannot do all that I used to do but I’m still doing things so that’s making me happy ☺️

MS_Indestructible profile image
MS_Indestructible in reply to Babslover

Babslover , Rhea you might like a post I made under my old user name

[@Ms-Indestructible] How to Retrain Your Brain

healthunlocked.com/mymsaa/p...

FiddleStyx profile image
FiddleStyx

Hi Babslover. I am also new to this site and have found it to be full of pertinent information and sincerely friendly people. I try to exercise daily but at times I feel too tired or achey to try. When I finish feeling sorry for myself I turn to God and give thanks for what I can still do. Following this good reminder, I think about what it would or will be like when I am no longer able to walk. That does the trick for me. I tell myself as long as my legs still work, I'm using them the best I can. And it doesn't matter what it looks like. ...FiddleStyx

MS_Indestructible profile image
MS_Indestructible in reply to FiddleStyx

FiddleStyx you are so right

Babslover profile image
Babslover in reply to MS_Indestructible

FiddleStyx I pray to God also, not only for myself but for all others that need his extra help not only with MS but with the way of the world . I also ride a stationary bike usually once a day for five minutes or more if I can. My husband and I have 3 cats and a collie dog. With all these animals we have me they give me reasons to keep going. Sometimes is difficult but I want to be there for my husband and them.

MS_Indestructible profile image
MS_Indestructible in reply to Babslover

Babslover thank you for the prayers. Sometimes life's challenges can be daunting at times. LOL [Lots Of Love]

greaterexp profile image
greaterexp in reply to Babslover

It’s a blessing to pray for others, but I’m so grateful for prayers on my behalf. MS keeps on our knees in more than one way!

Babslover profile image
Babslover in reply to greaterexp

Sorry I didn’t respond sooner. When the weather gets,warmer I believe we will be talking about what we can do now. Outside will change my life 😊.

greaterexp profile image
greaterexp in reply to FiddleStyx

You hit the nail on the head!

Morllyn profile image
Morllyn

Welcome Rhea! Yes to both.

Fancy1959 profile image
Fancy1959

Babslover, hello and welcome to our extended family from Fancy1959. I am sorry I missed your joining 10 days ago. But I saw you make a reply and I knew I had spoken to you before so it's better late than never!

You have found a safe place to come and ask questions, voice concerns, or simply speak to some of the most caring, compassionate, and kind people I have ever met. Because were all affected by this monster we can give you a unique insight into what we go through and hopefully my translate and help you to cope with what this beast is putting you through.

Remember the more you post and answer questions the quicker we will get to know you and you to know us. We have much we can learn from one another. Until we speak again please take care. We are only a post away if you need anything from us. And finally remember that together we are stronger!

rlh1974 profile image
rlh1974

Babslover Hi! Welcome! This group is aHmazing! Spelled that way on purpose!!!! Dealing with this freakin monster has been and is difficult for me. I am only 43, I was DX'd 2.5 years ago, but have had MS for an estimated decade when looking back on all the symptoms.

Anyway, Like everyone else has said. What keeps me motivated is my faith in God, My aHmazing wife and family as well as a healthy dose of never ever being able to be serious about anything! Ever! It's like I am 12. It annoys my wife beyond words! It's part of my boyish charm! LOL! I may have progressive MS, but a healthy dose of humor and sarcasm helps!

Rob

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