Erin....I'm so sorry you're having such problems now. We never know when this monster will rear it's ugly head or stay for how long. You mentioned hurting so much while trying to lie down in bed.....that's why I haven't slept in my bed for a few years. Have you tried sleeping in a recliner? That worked for awhile until it became too difficult getting in and out, even though it was a lift chair. Now I just sleep in my powerchair, tip back a little and grab my "blankie"...

It's not the ideal situation for my swollen legs, which should be elevated more, but even if I had a hospital bed, I'd need help getting in and out. I'm holding onto my independence as long as possible.

Speaking of sleeping, guess I should try it now for a few hours. My aid comes at 11 am for three hours. I'll be thinking of you and pray you find the best outcome for your situation. Hang in there!!

erin,
i am praying for you; for somehow to feel better, have less pain, be able to sleep and renew yourself. and, to find someone who can be at your side thru seeing these "drs".

have you tried calling your MS society for help?
could your PCP help you. if you told him what you've told us could he somehow intervene for you?

God Bless erin.

I managed to get away from having to do errands for my parents constantly, and got down to the orthotic clinic this afternoon where I got my AFO. I've been needing to go there for months, but with my dad's health issues, I'd been putting it off.

Had him do some quick basic maintenance on the AFO. He adjusted it so that it lifts my foot up better, and he put the pins/stop back in it, to keep it from making my knee hyperextend. I didn't really need the stop earlier this year, mostly because I was still driving my car like a normal person at the time, and I needed the ability to move the foot at the time.

I have to get used to it again with the stop in it keeping it from hyperextending me. Told him that I'd quit wearing it for several months in the summer and fall because it was causing me more problems than it was solving, and was uncomfortable. At the time I was able to move my foot better, and it wasn't dropping as much. But then I had that flare kick things up again, and had really bad fatigue. I started wearing it again about three weeks ago when I started trying to do the exercise program, and was walking on a treadmill at the cardiac center.

The orthotic tech told me that it should work better now once I get used to the adjustments, and that walking on the treadmill should be easier once I can get back to doing that again. I stopped going to the exercise program for a bit because my dad's eye problems kept us from it. I had to take him to constant eye doctor's appointments because the pressures in his eye were out of control. It ate into the time that the cardiac center's gym was open.

Hoping I get used to the adjustments in the next couple of days. There's a chance I can go to the cardiac center at least one day next week. (they're closed because of Xmas, and will be closed at the end of next week because of New Years)

The tech told me the springs in the brace were not exactly springs anymore. More like crushed pieces of metal, and part of the brace was loose too. I told him that I'm going to hopefully change my insurance in the next few weeks. Beginning of the year I'm probably going to ask for new shoes to be on the brace.

He told me to go see my doctor. Which I've been trying to do for several months. I'm on a wait list because when the insurance company made me switch physiatrists, the new guy got inundated with new patients who also got forced over to him from their old doctors. Poor guy is backlogged now.

Stressful day today, and this post is rambling. I'm going to go watch tv.

I was just upstairs, trying to be sociable for Christmas. And I finally just had to come downstairs because the family members that don't believe that I'm sick were really ticking me off.

I couldn't walk thru my kitchen because one of them kept opening the dishwasher, and leaving it open. My balance today sucks, and if I try to bend down to close it, I start falling into the dishwasher. I asked him to close the dishwasher once, which he did. But then opened it up behind me and left it. So I couldn't turn around. Why they have to leave it open, where the three people in the house using walkers can't get around it. Annoyed me.

Then the whole not-being-able-to-stand-for-more-than-two-minutes-without-falling-down was getting annoying, because the able-bodied people plunked their butts down on all the chairs around the table, and wouldn't get up. If I said anything, they did the annoyed sigh, and grudgingly moved, but didn't offer me a chair.

Then I had to suffer thru several comments, where they implied that there's nothing wrong with me. I finally got tired of it all, and came downstairs. I'm really shaky today, and am really annoyed that the able-bodied family members that don't live here are such clueless lunkheads.

At least my dad's little sister was nice today, and I think I made her whole Christmas when I gave her a Kindle Paperwhite, and a fancy cover for it. I swear her eyes popped out of her head, and she sounded like a little kid when she asked if it was what she thought it was. I don't think anyone has given her anything like that before.

I'm just really stressed out by the other family members who can't be bothered to offer the handicapped person a chair. (in my own house!) Can't wait till everyone leaves, and it's quiet. I'm tired.

Erin I can't believe people think there is nothing wrong with you. I am glad my dishwasher is up against a wall because it is always open. The two of us don't use enough to run it very often and we just leave it open and keep on loading it until it's full. On our holidays we run about 3 loads because no one else fills it just like I do They think it is full and really it's only half full, they just don't fill it right

I can't believe that my sister doesn't seem to believe that I'm sick. My dad has told her. I don't ever talk to her about it, because she rolls her eyes at me. We pretty much haven't gotten along ever since she hit puberty. Not sure why, but she's always seemed to not really like me much.

She's the one I seem to get the most disbelief from that I'm sick. Her best friend has MS, and from what I've heard, her friend is doing fairly well with her MS. At least the last I heard. I kind of have a feeling that she might think that because her friend doesn't seem to have any problems, that she might think that the same would go for me. Too bad it doesn't work that way in reality.

It's just getting on my last nerve that I get comments from her that a lot of people with MS would find insulting. At least the people with MS that's fairly active, and disabling would probably find some of her comments insulting.

Hope things calm down for you after the holidays. I can't even tell you how happy I am that my sister has moved far, far away, she only believes I'm sick when it can make her the center of attention . We haven't gotten along since my second Christmas, one year, one month and three days old and she decided to spaz out and beat me with her Barbie because I was chewing on her other one that she gave me to play with i might add. Seriously, whatelse is a Barbie good for if not gnawing on her legs?

Anyways, she's also one who can be extremely insulting whether we're alone together in which case her insults are towards the "it's mind over matter, you're only sick because you think you are" to.... In public (around other family members too) "you can't do anything for yourself at all!! Should I grab you some more napkins to use as you drink your water?" Insults.

My brother and sister-in-law were also terrible for having any kind of courtesy, they were staying with us for a bit last year, I was having serious vision problems and they kept leaving out trip hazards that I couldn't see half the time. Grrrr.... And worse they moved out because "they" couldn't stand living with us any longer if all I was going to do was constantly snap at them over stupid things.... Cause of course it's stupid that I'm doing daily face plants because they're leaving cabinet doors open, chairs pulled out from the table, stair step thing in the middle of the walkway, not to forget he little baby toys and such scattered about....but I was just a crazy control freak.

So you're not alone in having inconsiderate family members, most you can do is tell yourself that you didn't get to pick them.

Christmas was a huge stinking pile of disappointment.

The aunt that I gave that Kindle to, and I was happy that she liked it so much. Well, she went over to my other aunt's house across the street. While she was there, she looked at that aunt's tree, and said "are any of the presents under here for me?".

There was actually nothing for her under the tree there, but my other aunt felt kind of put on the spot by the comment. She ended up giving my aunt three presents. Two of which were what she had intended to give to me. (diamond bracelet, and a pair of gloves).

That present would have been the only thing that anyone would have given me for Christmas. All of the presents I got yesterday were things that I had ordered for myself because my dad has been sick this fall with his vision problems, and had told me to do all the shopping for him and my mom. (I ordered everything online). I knew what all of my presents were, because I ordered them for myself. I didn't even bother wrapping my own presents because I didn't see the point in doing that.

So I am extremely disappointed that the only thing that I was going to get that had been picked out by someone, and I had no knowledge of it beforehand ended up going to someone else. I saw the bracelet. When my aunt came back over to my house before she went home. She made a big deal to show everyone what she got. It was a really really pretty bracelet. It was mostly blue topaz, with some diamonds in it. It wasn't a super expensive bracelet from what I could tell of it. Probably sterling silver for the metal. But it was the style of jewelry I like.

Now that I know it was supposed to be mine. My feelings are really very hurt. I wish my other aunt hadn't told me that she gave my present away to someone else. I've been crying off and on today because all this did was just reinforce the feelings that no one cares. (I know my dad does, but he's had a lot to worry about this year).

Today also, I've been having a LOT of problems walking. It hurts, and I can barely move my feet. I know I'm going to end up with the MS ruining the rest of my life. I'm sitting here feeling it happen almost daily. I can't stop it, and no one cares.

It's not like I would have any use for the bracelet, or anywhere to wear it, since I don't go anywhere, or do anything anymore. It's just that I got a fleeting glimpse of it before I knew it was supposed to be mine.

I really really hate my life, and the MS.

Erin, you just come live in this forum and we will be your family. Not a one of us will hurt you. Your Aunt needs to talk to this friend of hers and ask her if there are different kinds of MS or some people have different symptoms than she does. Has she never heard of Annette Funicello??? (SP?) I know I am one of those people like her friend that I am sure a lot of people would be jealous of but at least I am aware that I am an extremely lucky person.

I hate Christmas too, sometimes, when I read stuff like this, Erin. It can be such a strictly "what's in it for me?" affair. That person purposefully leaving the dishwasher open...it was a gate and they controlled who walked through. Might've been the only thing in their pitiful life they could control.

Your aunt told you she gave your gifts away?? Can't call her insensitive because she was sensitive to the other aunt who asked if any gifts were hers. Sheesh, no wonder your gift recipient's eyes lit up at your present.

Your sister has a friend with MS who is doing well, well then, why aren't you doing well?? Surely you are faking because everyone knows MS hits everyone the same. Send her some info on Annette Funicello. Oh, never mind, don't waste your time. Everyone knows Annette was either faking or didn't have MS.

I know your feelings are hurt, Erin, but please try not to cry. Bullies love it when we cry, and you are giving them exactly what they want. Even if they don't see you cry, they know they hurt you.

Never thought I'd say this, but, Shake It Off. (http://www.directlyrics.com/taylor-s...ff-lyrics.html)