Can you ever really forget you have MS?

[muse_7]

It seems like no matter what I am doing I am thinking about how it applies to my MS. I have PPMS so my symptoms may differ day to day but I always have them.

It seems like all day long MS is never far from my mind because of how I can or cannot do something or the preplanning that has to be done. From going to the bathroom (or trying to lol) 40 times a day, meds, doctors appts, financials, to what to eat, whether or not the right thing will come out of my mouth, how I will pay for doing something but doing it anyway because I might not be able to someday. It's always there.

It's not depression, I have a great family and life that I cherish. We laugh and joke everyday. I'm just wondering if I am obsessing or if others feel like this too.

[Lexie]

I don't seem to dwell on the MS but rather on what I can't do because of MS. I am very fortunate that my children are grown and my youngest grandchild is 7 years old. I am still able to work a desk job but it is a struggle. I work and go home and get into the bed. I only have one more year before I can retire so I keep plugging along. I think of all of you young parents and the things MS has taken away from you. I will be 62 in June and was just dx almost a year ago. So I am one of the most fortunate ms people.

[Guzzy]

Hi muse-7
Well all I know is that is EXACTLY how I feel. The only difference is I think Im still rrms. It is always there, in every decision, every moment if happiness and every low point. I am like you, also happy with my life. The only time I don't have it lurking there is when Im dreaming.....

[Cat Mom]

MS is like the full time job I didn't apply for but got anyway, and can't get fired from!

[pjsSissy70]

I always felt I was lucky. Ive had it for 20 yrs and up until this past October I knew I had it but it never bothered me. Flares were so mild it didnt interfere with my life at all. So I never thought about it until this past October when I got hit with a huge flare and then another huge flare in December and now Im disabled in my legs so now I think of it everyday. I feel like I did when I was dx because whats happening to me now is what I feared when I was dx.

[penkalet]

Hello,

I am like Lexie a lucky one. Dx 2009 at 62 and have been retire for a while.
But I really feel for all the ones like you that have still to work and take care of the family!!
Then you are very courageous and I admire you , like that could help.!
Just take it a day at time and you get trough it.
Which you the best

[Chipola Lady]

Hi Guzzy!

I've had MS for about 24 years now, and the Lord has blessed me so much in letting me raise my 3 fabulous children who were still preschoolers when the diagnosis hit.

In the years before the kids were grown, I was usually able to force the thoughts of MS and the horrible fear to the back of my mind except when a new attack such as optic neuritis hit.

Just now I do not really think about MS except as one of the things which cause unending back pain and juat one of the things which cause so much disability and keep me mostly homebound and very isolated.
Layman's opinion, you may be obsessing just as I am part of the time. Surely we both can force our minds to see all that we have left and not all we have lost.
remember the glass is half full as well as half empty.

I have Scots blood and try to remember that the Scots were fierce fighters. We must be fierce fighters, Guzzy! Hope you have a good psychologist or other therapist, as that's another way to fight fiercely!

Wishing God's blessings for you! You'll be in my prayers. Don't forget- prayer helps, too.
Sincerely,
Chipola Lady

[muse_7]

Thank you for all of your candid answers. I'm a very fortunate person and I know that. I don't really think of MS as a necessarily good or bad thing, it just is. It's just seems to color everything I think or do and was wondering if others felt the same.

[candycane]

I feel the same way you do. Well said.

[Windwalker]

I think of MS as a bad thing.

How can you not think about it constantly or ever forget you have it, when every small little thing you do takes a huge effort and as you point out...any attempt to do something has to be "master planned". It's not obsessing...I don't obsess about my MS but I never forget I have it.

[tigergrl74]

It seems like no matter what I am doing I am thinking about how it applies to my MS. I have PPMS so my symptoms may differ day to day but I always have them.

It seems like all day long MS is never far from my mind because of how I can or cannot do something or the preplanning that has to be done. From going to the bathroom (or trying to lol) 40 times a day, meds, doctors appts, financials, to what to eat, whether or not the right thing will come out of my mouth, how I will pay for doing something but doing it anyway because I might not be able to someday. It's always there.

It's not depression, I have a great family and life that I cherish. We laugh and joke everyday. I'm just wondering if I am obsessing or if others feel like this too.

It is as if you took the words right out of my mouth. I too have an aggressive form of MS that affects everything that I do. Thank you for sharing, it made me feel human

[Thinkimjob]

Before things got bad, I really didn't have to think about it too much, so I didn't.

The needles were a reminder, and carrying the styrofoam box with us whenever we went away was a reminder, but generally it was all right.

I didn't let myself worry about it too often.

Now I think about it constantly, because I have to think
about how I'm going to get up that step, how I'm going to
stand up in the shower long enough to wash my hair, and how I'm basically going to do - anything.

I with Windwalker. I'm not obsessed. It's just how can you not think about it when every last little thing has be planned.

I'd rather never have to think about it ever again.

And I agree with pjsSissy70:
"I feel like I did when I was dx because whats happening to me now is what I feared when I was dx."

[meeegun]

my dx came as quite a surprise. i was blissfully unaware that i had MS for most of the years that the doc thinks i may have had it...until recently that is. even though i feel that i am only mildly effected at this point, i too find myself always thinking about it. i think in my case a lot of it is processing the dx since it is still very new. i have sometimes wondered if i am perseverating on the diagnosis. i try to give myself some credit and be kind when i start wondering these things. its a life-changing event. i would be worried if we weren't thinking about it. i guess its a very fine balance between denial and obsession. but i think putting it out there and having discussions like this keeps us walking the line.

[muse_7]

It's interesting that we all have so much in common yet such different experiences.

My PPMS hit suddenly after a surgical infection last year, I was 43. I went from being on sick leave from the surgery to "somethings really wrong but I'll get it fixed" to "this isn't going away" to having to quit my job, never having gotten off of sick leave. Then months later finding out what it was. I actually felt a lot better after getting diagnosed. At least I knew what I was dealing with and wasn't crazy.

I don't know which is worse, having it my way or being young, getting diagnosed RRMS and never knowing when it would hit. That seems like a kind of slow, cruel torture. I guess it all depends in how you look at it. Either way it's a life changing experience.

At this point Im just trying to figure out what I want to be when I grow up all over again. Not in a job sense, that's not on the table. But who I am in the world. And I want to be more than the person who thinks about MS all the time. I sometimes wonder if people who are born handicapped feel the same way or if they can let it go mentally.

Anyway I thank all of you for sharing your thoughts and listening to mine.

[Chipola Lady]

Thinking handicapped less frightening for me

The reason I had to so many years ago force myself not to think much about MS was partly because I had three small kids to raise, but mostly it was the terrible fear that thinking of it stirred up.

This terror was based on the fact that I'm an RN retired, and years ago , working home health, I was visiting nurse for an MS patient who was bed and wheelchair bound, and whose mind was badly affected. This was the only experience I'd had with what MS could do, and was a worst-case situation.

That memory is permanently with me, so thinking of MS specifically, versus planning how to pace out trying to get ready to get to a doctor's appt. leads to depression and anxiety.

Instead, I just think of myself as disabled, or differently abled and try to concentrate on what I have left instead of what I've lost. Daily pain from both MS and multiple back injuries ,along with several major losses (job, father, dog, ability to drive, etc.) recently had me so depressed that I attempted suicide. Now, am hugely better mentally since being put on Lexapro. Have also started seeing a psychologist. Feel I've been given a whole new life, and strongly recommend anyone with any symptoms of depression tell their doctor, and if needed, keep telling him until he does something to help you!!