Things between he and I have been so awesome since we talked. Woke up yesterday had my coffee brewed fresh baked blueberry muffins cats feed watered and box cleaned. And he even had cleaned the dishes! He's so amazing. I feel so stupid for not saying anything to him for so long.

Debbie- I totally feel the same. Especially with waking up and being so grateful for everything then by 10, having a different perspective. I feel like alot if not most of that is from frustration stemming from or relating to this crap disease.


Still super numb and have fallen a few times. Took a really nasty fall the other day. My back is killing me today from it. And still haven't heard from ss. But things are much better and my spirit has definitely been lifted.

He doesn't work, just great. How can anyone over the age of 20 NOT work and want to buy stuff, live independently of the "folks" with their GF's? Wish I could still work at my job, impossible now and desperately trying to figure out WTH I can do for work. SUCKS! I'm too old for this crap! looking for another "MS compatible carrer"

Use a walking stick for the falls.....who cares....you're going to get hurt badly if ya don't.

I am most definitely going to use a cane.. im falling at least once a day. And that's just at home. I haven't stepped outside for a few days as its over 100 where im at.

My bf doesn't work, but is doing glass art like marbles.pendants.wine stoppers etc.
he's sold a few things so far
He's pretty talented considering how early in the game he is.
I honestly think he has the potential to be big one day.
he said he's going to get a job so we can start our future.
I support him in the lampworking as this has been a dream of his since we were in high school.

Today, I think I will decorate my cane. As crazy as this sounds, if it has my flair to it I might feel slightly less embarrassed by it.
and instead of looking drunk, people will see the cane and know that I have some type of disability versus looking like an alcoholic by staggering into the grocery store at noon.

I feel im getting deeper into this new flare.. still super numb but couldn't do anything yesterday. I slept for prolly 20 hrs off and on.today isn't as bad so im thinking some healing action went down in all that sleep.

So many days wasted away by ms.

Have your BF do the decor of your cane. My DH was an Artist,
Signwriter & Pinstriper and supported us in style!!! He also
carved, decorated and gold leafed my cane..

Eric, hope your cane is waterproof and doesn't have any sharp
instruments attached. (rubber raft, ya know.)

AynaDee,

I'm sorry you are having such a tough time. I'm also sorry to have to tell you this, but if you are falling every day, then you've likely already passed the point at which a cane would be appropriate. Balance that is that poor cannot be compensated for enough with a cane. A rollator or walker would be more appropriate (especially if out of the house.)

Have you had a PT evaluation for a mobility assessment? That is what I would recommend. I am an OT and my dh is a PT and he agrees that more than just a cane is probably needed.

Again, so sorry you are going through this.

I agree with this as a normal "one legged" cane may not be enough. If you have to put a lot of weight on it as you walk, then it could slip out. A 4 legged cane may be better and a walker/rollator will *admin edit*, because it screams "Disabled DISABLED!! . I used a normal walker last winter when I had an extreme flare and I hated it. Starring, questions, special "baby talk" treatment like I were retarded or someting I hated the attention a walker brought. Most of it is because we are young and walkers aren't usually associated with young people. People get very curious when they see young people using a walker when out and about and not in a hospital.

I don't beet around the bush, Anyadee....it sucks if you have to use one and it will be some time before you get comfortable bringing it out in public. I myself don't care anymore...My cane lets me be safe and independent and yes it helps to say to others "i'm not drunk, I have some problems" but even then I am not caring what people think anymore, cane or not...think I am drunk? I don't care....watch me get in my car and drive drunk!!

Surprised someone hasn't called the cops on me yet!!

But yes, once a day is too much...yerr going to get hurt.... Get an evaluation and have them set you up with a device... They'll even teach you how to properly use a cane and get it to the right height... Mine is blue and a bunch of my friends signed the shaft with silver marker.... means a lot to me.

So go decorate and have fun doing that....

It sure sounds like you definitely need something - and soon before you break a hip, or a leg - or your neck - and end up even worse.

Professional advice sounds like a great idea - even though you may not like what you hear.

Much love, and so sorry that you are going through this.

xx

Unfortunately in this country if you have no insurance, the only alternative is the ER. And chronic symptoms like yours will probably not be addressed in the ER, IMO.

Sally- your cane your hubby carved for you sounds sooooo wicked! Walkin in style!!
My boyfriend is quite the artist so I may have him make it purty for me

My bf is concerned with me using the cane as he fears that I will still fall, so im thinking he's on the same page with needing to use a walker.

Im really getting angry with how many times a day I hurt myself.
At least, so far this ummer, I haven't given myself anymore black eyes.
gave myself my first black eye ever last summer by losing balance and connecting my right eye with the corner of a metal chair. I thought for sure I was gonna lose my eyeball on the way down, jusssst missed it, thank goodness!

I haven't been evaluated. My doctors say 'oh wow! Do you use any assistance?' My reply is 'of course! I use walls, countertops, doorways, dig my toes into the ground, or my bf supports the right side' none have ever sent me for evaluation or recommended anything.

I agree with Debbie about the ER. That really is my only way of getting some kind of help.

Bad thing with that is there are never any tests done. Just hook me up to some dripping roids.

When I experienced diplopia and nystagmus in dec no tests were done and none of that was documented in my file. I feel like those are semi serious and should most definitely be on file.

Hopefully those two things will never happen again. Made me feel kinda crazy. I knew what I was seeing wasn't really happening but when every inanimate object around me was wiggling and moving, it gets pretty trippy. And nauseas.

Weather will be in the 80s this week so maybe ill get to go outside at some point!!