having another bad week.

I feel worse than I did the other day. Just feels like everything is getting worse and worse.

someone tell me that MS isn't always like this...please?

They do not know what I have but they see my struggle to walk with my cane everyday. I've debated telling them, I only just found out myself.

I do listen to nice calming music in my office but one of my co workers is so loud when when she talks I can hear her with my door closed and music playing.

I did try the find something nice for the first two years I've worked there. I'm getting worn thin in that particular area.

Thank You for the advice. I think I just needed to vent because I was feeling like such a terrible person. I was very positive and did not have such a negative inner monologue when I started working there.

Thank you Erika. I too feel the same way. I sometimes feel like they are more disabled than I am by their lack of emotional and spiritual growth.
The one time I tried to show compassion and over support to one of them it went horrible wrong, she left early for the day and didn't speak to me for 3 months. AARRGG!!
She apparently is only interested in people who agree with her that her life is a complete tragedy and anyone who offers support or positive ways to view things is the enemy.
Mostly I try to keep my head down listen to mellow music and get through the day. Some are just harder than others.

Well yes, that sure can happen...especially with people who have that the form of neurosis (enjoys suffering). They really have to grow tired of it themselves before they can over come it, and sadly some never do.

With love, Erika

kerOpi, I'm lad you feel you can vent here. This is the place to do it.

I am exhausted to day . I spent all last night with my sick son. DH slept on the couch because he had to be to work by 6:15 am and our son slept in our bed on several towels with a bowl between the night stand and the pillow.

I can't move fast, especially after laying in bed for so long. So having our son in our bed was the best solution. The longest stretch of sleep I got was about 90 minutes and that was entirely on my side with my legs bent, big mistake. I woke when my son got sick again and had one of those make you cry and want to cut your leg off calf cramps. Took some Baclofen and managed another hour of sleep before I got up.

It is so frustrating when your body gets in the way of trying to take care of someone else. DH will be home around noon and then I have to go to work. I have to do payroll every Thursday.

I don't wanna

kerOpi ,

That's one of the miserable things about this stupid disease; how it gets in the way of what we need to do...never mind what we want to do. Another is how long it can take to get the body ready to actually do something productive...like go to work and be functional once there.

For example, it takes me 4 hours every morning just to get the body stretched, washed, dressed, fed and functional enough to get out the door...if I get that far. In between doing those things I meditate to focus the mind and stretch the body some more. Sometimes I even get some exercise done in the morning.

When I'm able to work, I usually take a 2 hour break at mid day to do a quick "tune up" on what ever is going through a rough patch, sit in meditation for a while and try to go for a walk as well.

I really feel for you and don't know how those of you with children do it. I looked after my dying husband (brain cancer) for over a year and it was a real toss up as to who would buy the farm first.

All I can say, although I know it is easier said than done, is to set time aside for yourself so that you can look after your own needs as best you can. Even if that is laying down for a rest/nap.

With love, Erika

So well said. I struggle trying to understand WHY people will not ever move out of the 'victim' role. Sure we all throw a pity party, none are immune.

They must get some sort of pay-off for playing the victim

An acquaintance once said to me "I am amazed that you are smiling EVERY TIME I see you" My response was, well if I am not smiling, you are not going to see me"

My dear family and close friends have seen me in my bad ways, but its not my public face.

We all have a lot to offer each other in terms of information and support, but its only useful if its tried!!

I am rambling so signing off!!

Thanks Erika.

I am sorry for your experience with your husband. I too take about 4 hours to get ready before I can walk out the door for work and tend to take 2-3 1 hour rest breaks, usually ready news articles. I am so thankful that my work has a lot of down time.

It's not easy having a young child and dealing with this disease, that's for sure! I told my dh after my diagnosis and realization that this has been with me since childhood that I was glad I didn't know pre child. I probably would not have had my son. He is what keeps me going everyday.

I too take hours to get my "metabolism" revved in the morning. Someone wondered why I couldn't got to a 9 o'clock church service, and I said, it just takes too long to get ready at my age. No use trying to bring the "illness" part into it, old age can be the excuse.
I also understand regret at not having been able to do what I would like for my family, let alone what I really needed to do for them. Even though my parents were hostile to me and told my son lies, I had to let him stay with them when I was at my sickest, as when I was in the hospital for a month. I had to just put my son in God's hands even if he went into hostile territory. I complain how he "came out" sometimes, but I am realizing more and more that he came out WAY better than what could have been expected! He has a good job, takes excellent care of his family, and even is ready to take care of me if I collapse, I believe. He has a sense of moral value that not every man has. Thank God!
I so regret that my illness was a burden to my husband, but perhaps God wanted him to have this burden to grow into the saintly person he was...that sounds pompous, he already was a good man when I met him. Anyway, I am feeling better now about having done as well as I could, and perhaps to have fulfilled my purpose in life.