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
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Jesmcd2
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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.
Not let it define me... I laugh in the face of whoever said that!ππ€£ Pretty sure it's eating my life!π How are you gracy225 ? Welcome to the fam!π€ππ
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.
Great post Jesmcd2 . Yesterday was my future daughter in lawβs 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 couldnβt get in my friends car, my leg wouldnβt bend because of the cold so my hubby had to take me in the truck. I couldnβt even help tidy up because I was too tired by the end of the shower. Your post has made me feel better, thank you π€
Iβm not a spring chicken and my neighbors are even older. I feel incredibly guilty asking them for help and am also cautious about itβ¦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, Iβve not had the readily available help so Iβm trying to change things so I have to ask for less assistance. Itβs all annoying because I hate to ask for help in the first place.
Love the post. Weβre 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 sharingππΎπ
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.
I used to walk were I used to live... I miss it... I really wish they could help you with your dizziness bxrmom π I don't know how you do it! π€ππ
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.
Wait.. they make scripts for thatπ€ Have you ever tried something like that? You can tell I'm getting scattered...π I have to much to do and not enough time to do it!π€£ππ€ππ
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
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.
HA! I emailed Ocrevus after seeing there commercial one to many times! Got sick of hearing MS doesn't own me... π Bite me!ππ€£ I have been on Ocrevus for 3yrs and still get lesions... You take care of you my friend!π€ππ
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!
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.. ππ€£π€ππ
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.
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.
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.
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 otherπ
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 itβs 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 wouldnβt 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 itβs 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 itβs not going away - Iβm not the mom I wanted to be for my kids but I am their mom. Iβm not the spouse I wanted to be but I adore my partner. Iβm not the worker I once was but I am the one I can be.
Itβs setting and accepting the limits of today whether itβs 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.
"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.
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