Where do I fit in?

[lemstar]

I feel very lucky with the course my MS has taken. My first episode was 32 years ago, and my next obvious episode was two years ago, so I went 30 yrs with mainly mild sensory symptoms. I would say that is still where I am at....mostly.
I have numbness on my left side, and some on the right. My hands are both numb-ish, left worse. I have balance issues, but compensate very well. My stamina isn't what it used to be, but I am 56 years old....
Lately, my symptoms have been increasing a bit. My balance is a bit worse, my weakness is a bit worse, my numbness is a bit worse. But I am still completely functional. I can't walk in the dark too easily without holding onto something, or at least touching a wall.
I have become so accustomed to my symptoms, and am so relieved to still be able to function, mostly fully. But when I think about what normal is, I realize I am far from that. My sensory issues can drive me crazy if I let them. It feels claustrophobic to not regain normal sensation. And the fatigue is hard to ignore.
Why am I writing? Two reasons: I feel like no one in my world really understands what its like to live wtih this very invisible disease, and I wonder how many people feel like me, physically, and emotionally. I sort of make believe there is nothing wrong, but if I allow myself to consider this, I am impacted by MS considerably.
Thanks for allowing/indulging my complaining rant.....can anyone relate?

[kittin]

I Understand

I had symtoms early in life but did not know what it was. At about your age I started having symtoms similar to yours. I adjust and compensate.
Things have gotten harder to do and symtoms have increased but I refuse to give up. I have chosen to take no meds but have changed my eating and decided to stay involved with life. No one seems to get it and I have stpped trying to explain. Fatigue is my biggest obstacle.
I gave up a profession career but am presently working doing what I love. I know that I can only take a day at a time. some days, an hour at a time.
Rest is important and I have simplied my life.
Each person's road to MS is different and I can not say what your will be. I am glad that you are doing as well as you are.
REMEMBER to take care of yourself and keep yourself at the top of your to do list. Those who want to understand, will.

[Sir-Voor]

I know the feeling of being stuck between the healthy normal world and the disability world.

Although I take part in the healthy world via working full time, going out with friends and family, doing yard work, and etc.
I sometimes feel as if I’m just putting on mask and faking it, not most of the time just some of it.
At my age I should be thinking about have fun, not diet, meds, not getting too fatigued or over heated.

I don’t feel sickly or disabled; instead I do feel 10+ years older than I am.
The only good aspect to that is that I’m way wiser then I would be if I had not gotten MS.

[rdmc]

I feel fortunate too because according to the neuros, this disease probably dates back to my college days. Things came and went, but I always got better, so never sought explanation until my mid 40's when I was diagnosed. Went about 10 year classic RRMS, and carried on pretty much normally except during a flare.

Last two years have been an onslaught of one thing after another, related to MS, and my head is still spinning trying to adjust, as are my emotions. I do feel sick and tired and disabled, but to see me, I look pretty normal I guess (especially since my gait has majorly improved with the pump.) And mainly, for me, it'd be a problem for some doctor's (doctor's offices seem to make up my social calendar these days ) to take me seriously because they probably don't believe I feel as bad as I do. I said it in another thread, but if they understood the fight against fatigue it takes just to get there, maybe they'd understand a little better.

I am blessed, my family gets it. In fact, my husband pretty much cooked Easter dinner last evening for us, our son and daughter-in-law. I pinched in a bit, but wasn't having a good day, so my help was limited. After dinner and chatting a while, I said to son and DIL, "Okay, don't feel like you have to stick around, I know you've had a long day."

Both smiled, "We get it, you want us to leave...you must be having a bad day." I confessed I was, and they went home (I had managed to be able to fake it up until then, if I hadn't said something, they'd been none the wiser...other than maybe the fact that I never got up from my chair.) Now that's not always the case, a couple nights before my DIL had been here for a whole evening and I was having a decent day, so she stayed for hours. But they, my husband, my siblings all are tuned into my "swings" and it does help a lot.

Most folks will never get it, and I don't really expect them to. The ones that tend to get it have dealt with chronic illness. And since you were venting, I'll vent and say the hardest part to me is acceptance, even after all these years, because just about the time I've gotten to the point of acceptance and seeming management of one symptom, another one crops up and I have to mourn that loss and do the whole acceptance thing again...which leaves one emotionally in a state of limbo, IMO.