What is the most frustrating or difficult aspect of living with MS?

I have to agree  Loneliness is the most difficult thing. I was diagnosed Approximately 8 years ago sen set period of time I now have primary progressive MS Not able to work I am homebound  After a while people seem to forget about you because their lives go on yet you're us stays the same I have lost Have lost    All of my friends but to My kids are always busy with their  Lives my best friend is my cat lol I tried to find the joy in each day  I have a counselorCommands I have spoken with my doctors about this there are Many ways out That can be found to help     You just have to find the right resources

I am a74 yr. old man. I became paralyzed from the neck down when I was 68. It affected my whole body. I was almost completely shut down inside and out. After  week in ICU I was diagnosed with MS. I had never heard of anyone being struck instantly and that late in life with MS.  Just giving you my background. I now get around with a walker and I feel lucky that I can do that.  My wife and I moved from the city to a small country town. This attack happened shortly after we had moved. I always did physical type work so I never guessed that anything like this would happen to me. I built custom cars and street rods as a hobby and hd done so for almost 50yrs.So when this happened to me I could not continue on with my hobby, It's very physical work. I had been dealing with that pretty well even though it was hard to look at my big shop with all my tools and not be able to do much. My wife unexpectedly died a little over a yr. ago. She was my best friend. Since we had just moved out to this town I have no friends here as yet even though I have been here fo around 6 yrs. With the MS it is hard to do much. I relied on my wife to cart me around and we did everything together. So now I am in a situation with the covid 19 virus, no wife and no friends and living by myself. I have been occupying my time by trying to sort out things in the house and in my shop. We were not even fully moved in the house when this happened to me.  After all that I try very hard to stay as positive as I can. There are people much worse off than I am.  It aint fun but I just keep doing what I can to keep busy and have good thoughts.

Big Kenny, 

I too have many days where I ask the question Why Me?. But guess what, each of us can still do the things we like to do. It just needs to be modified in some way.

I was also a person who didn't want anyone to know about my disability. This worked fine in the first 10 years that I had MS. The last 5 years have been a little different. My MS has effected my lower extremities (walking, balance). This has forced me to tell people around me, so they wouldn't wonder why I had problems running.

I think the hardest part is people that don't understand how scared I am and the pain I'm in because I try to smile through the pain but most of my friends have just disappeared because I can't do the things I use too so it gets lonely.

Where do I start? Confusion, both physical and emotional. I can’t walk in a straight line with out taking it slowly. And I really have to think about it before I can even move. Muscle spasms. One of the only things that is good is that it brought my husband and I closer. He is a huge support. He spends so much time making sure I feel safe and comfortable with both myself and my environment. He spends time educating himself about different coping mechanisms I can use. 

Things seem to be happening too fast. And at 54 I am unable to drive.  My daughters and my ex-wife are there for me me, so I can't complain much other than I have so much frustration.  I can't tell you how many times I have thought to do something stupid (as my youngest daughter would say).  I'm having trouble telling them about all the new issues I'm having so that I don't frighten them, its not easy.   I have a joke with my Doctors when I report something new has happened.  We have come to the conclusion that it could be because of MS, or Diabetics (Nephropathy)  or my favorite category SOFT (Some Other F'in Thing).  I wouldn't wish this on anyone.  Stay Safe everyone

Losing mobility is for me the worst thing about MS. When it’s difficult to almost impossible to walk .... well that leaves some of us in a black hole. And it stinks.

Hi everyone,

How have you been doing lately?

I thought I might leave a comment here to revive this discussion.

I'll tag some of the newer members here. Don't hesitate to join in!

@Carmen2001 @dionisa71 @Solrick2017 @PSam96 @Jleakg01 @Irishsuly @Truddell02 @Pistachio @amboygirl29 @Kimtraore @Brenda05 @eigna728 @lpiquette @Relle100 @AMWood @khuether @marlaro @WILLIAMSJANET @blehn9042 @anitabekarr @KrapothS @judyheilmann @GwendolynnS @Ajustice07 @Writegirl0526

Take care!

Courtney

People don’t understand what it’s really like to have MS.

@Brenda05 thanks for commenting. Do you mean people in general or your family/friends?