Living with MS is hard...: Do you also... - My MSAA Community

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Living with MS is hard...

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
β€’52 Replies

Do you also feel guilty tho? I know there are times I do! I have to get rides everywhere I go. I can't mow my lawn, have a guy! But I should be able to do it! I shoveled last year. I gotta find a guy. Little things.. can add up...

Always Remember We Didn't Ask For MS.. So Don't Feel Guilty About It! It is what it is!

J

πŸ€—πŸ’•πŸŒ 

52 Replies
β€’

Yes, quite often.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to kdali

DON'T! You are doing the very best you can kdali Be Proud of yourself!πŸ€—πŸ’•πŸŒ 

kdali profile image
kdali in reply to Jesmcd2

Ty! πŸ™

hi Jes, i don't feel guilty asking for help because i am reluctant to ask and offer it every chance i get.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Sandydemop

I have a really hard time asking for help also! And will be the 1st to offer it! πŸ™ƒπŸ€—πŸ’•πŸŒ 

Hi Jwamxd, WOW you nailed it! MSer's are told not to let the disease "define you". While a great thought, sadly we have others that let it define us. I never know what my day will be like. MS does.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to gracy225

Not let it define me... I laugh in the face of whoever said that!πŸ˜‚πŸ€£ Pretty sure it's eating my life!πŸ™ƒ How are you gracy225 ? Welcome to the fam!πŸ€—πŸ’•πŸŒ 

gracy225 profile image
gracy225 in reply to Jesmcd2

Right? MS is our boss. I am not doing well as I've not slept in a few days. My balance/walking are horrible. How are you?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to gracy225

Why are you not sleeping? That's gonna throw off your balance and walking all on it's own.. πŸ€—πŸ’•πŸŒ 

gracy225 profile image
gracy225 in reply to Jesmcd2

I don't know as I have never had insomnia. It gets very bad and the worse thing for me. I can only assume it has to do with MS. Doesn't everything? :)

Sandydemop profile image
Sandydemop in reply to gracy225

I hear you but there are other things not related that happen at the same time. Maybe you could rule those out like caffeine at night, electronics (blue light) etc first.

πŸ‘πŸΌπŸ™πŸ˜‰πŸΎπŸΎ

Great post Jesmcd2. Yesterday was my future daughter in law’s baby shower. My daughter had to do everything, all I could do was turn up and provide the money for the shower. I felt useless, and to top it all, I couldn’t get in my friends car, my leg wouldn’t bend because of the cold so my hubby had to take me in the truck. I couldn’t even help tidy up because I was too tired by the end of the shower. Your post has made me feel better, thank you πŸ€—

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to jimeka

I'm so sorry jimeka I know how frustrating that can be.. look at it this way... You didn't have to do anything!!πŸ˜ŠπŸ˜‚πŸ€£πŸ€—πŸ’•πŸŒ 

I’m not a spring chicken and my neighbors are even older. I feel incredibly guilty asking them for help and am also cautious about it…none of us have great balance or strength but sometimes 2 people can make it work. Sometimes it means having to hire some younger person to do simple things that I lack the strength or balance to do. Ever since the last of my local family moved 1200+ miles away last December, I’ve not had the readily available help so I’m trying to change things so I have to ask for less assistance. It’s all annoying because I hate to ask for help in the first place.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Raingrrl

I get it! πŸ™πŸ€—πŸ’•πŸŒ 

Love the post. We’re stronger than we think because everyday has it challenges. We will keep pushing forward in spite of our limitations. God bless us all on this journey. Thanks for sharingπŸ™πŸΎπŸ˜‡

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to JSSimp

Stronger than we think? I get any stronger I'm gonna be the incredible hulk! πŸ™ƒπŸ€£πŸ€—πŸ’•πŸŒ 

JSSimp profile image
JSSimp in reply to Jesmcd2

Too cute. Incredible Hulk🀣🀣🀣

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to JSSimp

🀣🀣

I'd be in trouble if it weren't for my husband.

I do feel guilty sometimes.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to falalalala

Don't ever feel guilty falalalala !! It's not your fault!πŸ€—πŸ’•πŸŒ 

falalalala profile image
falalalala in reply to Jesmcd2

:)

There is a lot I have not been able to do since my last MS relapse in 2008 so I always have to ask for help or have someone else do it. I no longer drive due to my constant dizziness so I always need a ride. A lot of times I would walk somewhere but I don't do much of that anymore either :( Gets frustrating at times.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to bxrmom

I used to walk were I used to live... I miss it... I really wish they could help you with your dizziness bxrmom πŸ™ I don't know how you do it! πŸ€—πŸ’•πŸŒ 

bxrmom profile image
bxrmom in reply to Jesmcd2

Thanks Jesmcd2 My dizziness is always there to some degree but not as bad as it used to be when I had the relapse (thank God). Now they make a non-drowsy Dramamine that helps on bad days. I just do it, day by day. Taking a nap or at least resting seems to help.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to bxrmom

Wait.. they make scripts for thatπŸ€” Have you ever tried something like that? You can tell I'm getting scattered...πŸ˜‚ I have to much to do and not enough time to do it!πŸ€£πŸ˜‚πŸ€—πŸ’•πŸŒ 

bxrmom profile image
bxrmom in reply to Jesmcd2

I have not tried a script for it, though I have told my different neuros about the dizziness many times. The last time, he said it was because my blood pressure runs 'low/normal'. I don't think that's what it is. He told me to try compression stockings. I get too hot all the time and take my socks off at various times of the day so I'm not going to add those. Always something, I swear

πŸ˜…πŸ€­πŸ˜ŽπŸ€“πŸ§

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to bxrmom

Be more pushy about it! 😐 It's affecting your life!πŸ€—πŸ’•πŸŒ 

bxrmom profile image
bxrmom in reply to Jesmcd2

Thanks Jesmcd2 When I see him next, I will be sure to do that. Will update after my next visit.

In the last response regarding dizziness. Have your doctor write a script for Meclizene at a large amount and you wouldn't have to pay over the counter price.I am an expert in this area. Most of my vestibular nerve and have had to adjust to many changes since I had cancer 5 years ago. I was taken off my DMT for 2 years and it really increased my the effects of my MS.

Based on other responses in the chain MS does own me even though I'm Ocrevus and have been for two and a half years with no new lessions. The problem I have is my current lessions are getting worse and will for you to,sorry to be so blunt but it's what happens to all MS patients.

My thoughts are for you to get you feeling better.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to JTZES

HA! I emailed Ocrevus after seeing there commercial one to many times! Got sick of hearing MS doesn't own me... 😐 Bite me!πŸ˜‚πŸ€£ I have been on Ocrevus for 3yrs and still get lesions... You take care of you my friend!πŸ€—πŸ’•πŸŒ 

This real to life subject deserves a larger format. Sooo many things to consider and realities to reveal. You may need your own web site. I often see elderly people who are dependent on others to care for them, but they won't leave their home, meaning their relatives can not ( through guilt) live their lives. I don't want to be that guy. Maybe I don't want to be that guy, because I'm trying to wear their shoes. Tough stuff to think about!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to kwhompus

True is that... I would love to move closer to my kids... But, my parents are here... So I'm here! I don't want to be that guy either, my girls have cardboard boxes for me.. πŸ˜‚πŸ€£πŸ€—πŸ’•πŸŒ 

kwhompus profile image
kwhompus in reply to Jesmcd2

I'm afraid to think what my kids would do to me. Probably a pinata to start with.

The only time I might feel guilty about having MS is when I hear about others with MS that have far more disabilities than I have. The guilt is ... Here I'm complaining about having MS when there are so many that have a much more severe case than me.

no need to compare. you are here and you deserve a place to vent and receive support.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to hairbrain4

πŸ€— MS is different for everyone hairbrain4 and it's own obstacle's! Yours are no less important than anyone else's! We love you!πŸ€—πŸ’•πŸŒ 

hairbrain4 profile image
hairbrain4 in reply to Jesmcd2

I feel very blessed to be part of this group & that my MS isn't severe. It makes me sad to know there are others out there that have a more severe case.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to hairbrain4

I know... Me too!πŸ€—πŸ€—πŸ’•πŸ’•πŸŒ 

great poster ...love it ...

my mum is older and i feel guilty b/c i can't drive. i try to do televisits now that it's a thing and schedule outings at her convenience, but i still hate she has to take me everywhere.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to BlanketTime1

Yup, my dad has to take me.. it's not your fault tho!πŸ€—πŸ’•πŸŒ 

BlanketTime1 profile image
BlanketTime1 in reply to Jesmcd2

πŸ€—

i don't feel guilty,ms has made me very humble.when you are a very independant person before ms i think it harder letting someone do what you did without assistance.remember 1 foot infront of the otherπŸ‘

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to pamgarner

I'm glad you don't feel guilty! It is very hard for me.🀣 I'm about as independent as they come πŸ˜‚πŸ€—πŸ’•πŸŒ 

This post if fitting for all of us and anyone with chronic illness. I find that the invisible aspects are the worse as others cannot see or relate to what it’s like living in a body that is your friend and enemy. No matter how much progression or lack of progression in your MS lifecycle there will be those that are better or worse off than you. We have to give ourselves a little grace that by the time we were diagnosed there was already damage done (otherwise we wouldn’t have gotten a diagnosis). The bigger issue to me is the slowly finding out what that really means. Being on a DMT to prevent future damage until it’s not effective is great but there is already damage and that damage will present itself in some odd ways as you age, seasons change, and more.

I try to rely on others, manage my energy and run forward and backwards through stages of guilt and sadly it’s not going away - I’m not the mom I wanted to be for my kids but I am their mom. I’m not the spouse I wanted to be but I adore my partner. I’m not the worker I once was but I am the one I can be.

It’s setting and accepting the limits of today whether it’s aging or MS we adapt and those that are on this ride with us adapt as well and we can only be fortunate to have support in more than one way and with those surrounding us.

Just my babbling thoughts πŸ˜‚πŸ˜‚πŸ˜‚

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to JMWCO

Your thoughts are wonderful JMWCO and your doing an awesome job by the sounds of it! πŸ€—πŸ’•πŸŒ 

It is what it is... If someone doesn't get it , then i move on !!!πŸ˜ŠπŸ™πŸ’“LisaπŸ’•

P.s.- don't know how I suddenly have everything underlined!!πŸ˜‚πŸ€£πŸ€£

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Sweetheartonvdayl

πŸ˜‚πŸ€£πŸ˜‚ love it! πŸ€£πŸ˜‚ πŸ€—πŸ’•πŸŒ 

"God grant me the serenity to accept the things (MS) I cannot change!" No, I get mad, I get sad, but, I do not feel guilty. We are doing the best we can with what we were given in this life. We do not get to choose what is given to us, only how we respond. Eveyone on this forum handles life with serenity, laughs, and strength. I am proud to know you.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to agapepilgrim

You are so right, we didn't choose this! We all do the best we can with each other's help... I'm proud to know you also agapepilgrim πŸ€—πŸ’•πŸŒ 

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