I have I told anyone lately I hate MS?
 

What a holiday weekend this has been so far. I went to check the mail yesterday, the weather was wonderfully cooler and breezy. The mailboxes are 150 ft from my front door.

I was really struggling by the time I got to the mailbox. My legs acted like they were just tired of working, I was feeling exhausted, and I was in pain all the way up into my shoulders. I stayed at the mailboxes for a bit and rested.

The trip back to my house was even worse. I barely made it to the car in our driveway before I had to rest. I honestly thought I was going to collapse in the street. This has never happened before. I sent an email to my neurologist, he won't get it until Tuesday. I guess I am just very frustrated. My legs and back hurt more today than before. Grrrrr!

I hate this miserable, thief of a disease! :mad:

I hate it, too.

I also learned the hard way to never trust anything about MS. I might feel well enough to try leaving my walker behind but I know better. Just when you feel like you've accomplished something MS will butt in and make itself known. :mad:

I'm sorry this happened to you. :hug:

it's really <very bad swear word> irritating.

I finished my PT a week or two ago, and had been starting to use a cane again, instead of a walker. Then over the weekend, something happened, and the cane is a bit more difficult to use again. So, I'm using the walker most of the time again.

It makes me want to run down my ever growing list of swear words in various languages to say.

I was only diagnosed a little over a month ago, though I have had symptoms for a few years. I have never used a walker. Honestly, Saturday's incident frightened me a bit. I see my rheumatologist tomorrow to fill out a form for my SS attorney and I hope to get an email or call from my neurologist.

It is comforting to know that I am not alone, though I am sorry that I have company in this. Thanks to each of you for being here.:grouphug:

yeah, this is the suckiest "club" to belong to.. I don't like the dues, and the big blue membership card is ugly. (at least it's blue in my state. I've seen other colors)

I tried to cancel my subscription to all the "extras" that MS membership gives you, but they won't accept the cancellation.



/she said totally with bitter sarcasm

i'm sorry you're going thru this. be especially watchful this summer as a lot of us are heat intolerant. if i get too hot (like going to the mailbox) my legs may not want to move.

has your neuro discussed using any DMD's?
are you RRMS?

in my early time after being diagnosed i learned the hard way to start using some physical aids; like getting a handicapped sticker, using a cane, the cart in the grocery store etc. it all can help conserve energy needed for everyday activities. altho it's sometimes difficult to admit it.

i hope you get some help from your docs. write down Q's and bring with to appts. keep us posted.

Thank you for the tips, NurseNancy. I have a handicap parking permit. I am wondering about a cane or a walker, my arms are kind of weak too. I plan to talk to my neurologist. We have discussed DMD's, my neurologist prefers Copaxone and we are in the process of getting it through Shared Solutions and my mail order pharmacy. I already have a cooling vest. I will definitely keep you posted.

i'm glad you're making a plan with your dr. i was on copaxone for 10yrs & did well. i've been stable for a long time so we decided to stop the copaxone.
even tho it's a daily shot, for me, it was the most tolerable option.

i mostly use a cane. but, if i'm going into a store (which is rare) i use a rollator. if my legs get tired i can sit, plus my balance is better with the walker.

hope you feel better.

Aw!:hug::hug: Most of us can certainly empathize with you. It's not fun and kind of scary when that happens. I've had a slow build up to it and a sudden, legs don't want to function/move. The sudden ones are the worst because there is not planning involved. At least if I can feel the muscle fatigue before doing something I can choose whether or not to actually do it.

I use a cane most of the time when going out walking but some days I need to use the walker (rollator). I do fine with the cane for shorter distances when I am not have balance issues or walking difficulties. Longer distances, it's the cane. In the stores, I use the motorized carts if they have them. It makes shopping so much easier!!! If they don't have motorized carts, I have to use the shopping cart as my "walker" and the trips in those stores are usually short, like get what I need and get out kind of short, unless I'm having a particularly good day. Definitely consider getting both the cane and the rollator. I don't know what insurance you have but check to see if they cover the cost of the rollator. Your doctor can write a script for it if it is covered.

I hope you are doing better!:hug: