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Patients Multiple sclerosis

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Member Carenity • Community manager
Posted on

Hello Carenity members.

MS can be very difficult to live with because of the numerous challenges it presents, such as fatigue, cognitive difficulties, vision issues, pain, and disabilities (not to mention side effects from medicine).

How is MS affecting your life? and to what extent?

 

Thank you for participating in this conversation topic.

Beginning of the discussion - 9/7/18

How does MS affect your life?
1

Member Carenity
Posted on

Well, since being diagnosed at 25 and now being 27, my depression has been at an all time high despite being on a med for that. Also it affects my self image as well when I slur my speech, forget things easily and even have a weight gain issue, that being I can't gain no matter what I do and now my hair is even coming out by the clumps which I am told is normal with age but it does not feel normal since I am only 27. I have bowel issues where i literally can not go for days and constant nausea when in a car. Weather and baromic pressure has seemed to trigger attacks for me lately. Migraines are mosty everyday along with pressure in my head too. I shake, have times of inexplainable exhaustion and just a lot really. Before MS I felt somewhat normal and enjoyed life more instead of missing out ob things due to emotions, pain and so forth. Now I feel like I am falling apart and lately want to hide like a turtle in a shell all the time. I hope this answers the topic question and sorry for any tmi if there was any. 

How does MS affect your life?
1

Member Carenity
Posted on

It’s just hard. So many people either don’t know what is related to the disease (including some doctors) or don’t know what to say and so avoid you, or say stupid things like just push yourself. I’ve been struggling lately too and I’m 55 so I understand that the younger you are the harder it may seem but there are others that I know older than I am who can run circles around me. I feel like I just watch life go by. I take meds  for depression but I’m not sure they really help. I think it’s more situational than chemistry and that’s what meds are tailored to help with. 

I wish I had a rosier picture to paint but lately I’ve been pretty down.  

How does MS affect your life?
Member Carenity • Community manager
Posted on

@Hidden username‍ and @Hidden username‍ Thank you both for sharing. Is there anything that either of you do that helps get your mind off of the MS diagnosis. (I know it is always there, but anything to help?)

Also, I agree @Hidden username‍ with your statement about the depression meds... I have been on meds before for anxiety/depression from the numerous failed surgeries from my shoulder and the pain I have every day. I question whether they actually help because the pain and anxiety from my shoulder surgeries remain every day. Every day when I Wake up I have nerve pain and pain in the arm... so it is hard to not have depression when the thing causing you it is hitting you everyday. 

@Hidden username‍ do you feel the depression med is helping you? Is your hair loss related to a certain medication or from stress/depression? 

How does MS affect your life?
2

Member Carenity
Posted on

@Hidden username‍ the only thing I do to lose myself is read.  My favorite pass time. My eyes have been bothering me so when I cannot read I’m really cranky. 

How does MS affect your life?
1

Member Carenity
Posted on

@Hidden username‍ I agree. I love reading and when I am not able to do it, I get cranky also. We all have our little outlet, and reading seems to help me. What type of books do you enjoy reading?

I go through spurts of fantasies to biographies/true stories.

How does MS affect your life?
Member Carenity • Community manager
Posted on

@Hidden username‍, hope your eyes are doing better lately and that you are better able to enjoy your reading.

@Hidden username‍ I enjoy reading biographies also and true stories. I have not had much time recently to read, so hopefully will soon. Any recommendations?

How does MS affect your life?
Member Carenity
Posted on

Hi @Hidden username‍  they have been good enough to read some ... they’re not great though and staring at anything (the the road, or TV) has become impossible. 

I enjoy biographies also .. The Water is Wide by Pat Conroy is a good one. I just finished two of his novels recently and the man can write. I like classics also ... 

How does MS affect your life?
Member Carenity • Community manager
Posted on

@Hidden username I am sorry to hear that they are not doing great in regard to "staring at anything," but I am glad that you are able to keep up on your enjoyable reading.

Thanks for the recommendation. It has outstanding reviews on Amazon (over 1,000). I just may check this one out soon. I have been wanting to join a book club.

How does MS affect your life?
Member Carenity
Posted on

I also read Prince of Tides by Conroy also, and Beach Music (same author) and both were outstanding. I highly recommend both books .. 

The “staring at anything” is a problem. I’ve moved to a rural area about a year ago (I committed to the house just before my eyes became horrible) and driving is a problem, which is a problem living over an hour away from my doctors and all family and friends. It’s complicated my life considerably and my eyes are painfully dry at best and at worst feel like someone is sticking pins in my eyeballs at worst, so if it sounded like I made light of it it’s because I don’t like to complain constantly.  

Take xare. I’m not feeling the support and comradeie I did on Facebook and the MS and Lupus friends I had on there. I got off because of hacking but I may go back.  I miss everyone who became my friends on there. There was much more identification with fellow members who suffered so many similar (or exact same) symptoms. 

Tale care @Hidden username‍