Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Having a bad day!!!!!
Both physically & emotionally
finding it hard to bare up so I am going to try to vent & see if that helps
Steroids are done for another month.
But they do not seem to be working as well as they once did. I was told this would happen it is just a matter of time.
My right hand/arm went very numb after lunch. After supper my left hand/arm went very numb. Followed quickly by my feet/legs/groin. The numbness is quickly covering my body. Just after they put me in bed my chest is going numb.
I have had a day of forgetting things. It has been one of those days that I would rather forget.
I have a super-pubic catheter. Today they hooked up a leg bag as I was going out to a meeting. A few min's before going out a nurse looked at my leg the bottom drain was left open. So urine was leaking all over. My sock & bottom of pants were soaked. So I had to change before going. Now I always get them to check to see if the drain is closed but today I forgot. The one time I do & it is the time that it is open. Isn't that always the way it happens.
The pain has been worse so I am not sleeping well. The amount of pain that I am in is unreal. How can a person hurt soooooo much. I am on long acting painkillers with a breakthrough every two hrs if needed & let me tell you it has been needed. It almost seems like I am taking nothing at all.
HOW CAN YOU BE NUMB & HURT SOOO MUCH
I also have had weakness in my arms the last 2-3 days. Putting the lift sling under me is almost impossible. I now have to take breaks when feeding myself. My arm gets too tired.
I am afraid the steroids are not holding me. The symptoms keep coming back quicker & quicker. Without the steroids I am paralyzed from the chest down. I think it is loosing the independence that I worry about. The nurses here are great at doing things for you but it is nice to pour your own tea or get your own pc. Last sept I had to be fed. I really do not want to have to rely on people for that. Wiping my own butt. It is amazing what we take for granted.
I see my MS doc next week. We should decide on the dosing of the chemo. Hoping things will get better. But been told that they most likely won't. The chemo has stopped all of the attacks I was having. It has even made the steroids work better. But been told not to hope for too much.
Been trying to live in the day & not to worry about what "could" happen. But sometimes when you are seeing the "could" happen it is hard living in the now.
I feel like SCREAMING.
Both physically & emotionally
finding it hard to bare up so I am going to try to vent & see if that helps
Steroids are done for another month.
But they do not seem to be working as well as they once did. I was told this would happen it is just a matter of time.
My right hand/arm went very numb after lunch. After supper my left hand/arm went very numb. Followed quickly by my feet/legs/groin. The numbness is quickly covering my body. Just after they put me in bed my chest is going numb.
I have had a day of forgetting things. It has been one of those days that I would rather forget.
I have a super-pubic catheter. Today they hooked up a leg bag as I was going out to a meeting. A few min's before going out a nurse looked at my leg the bottom drain was left open. So urine was leaking all over. My sock & bottom of pants were soaked. So I had to change before going. Now I always get them to check to see if the drain is closed but today I forgot. The one time I do & it is the time that it is open. Isn't that always the way it happens.
The pain has been worse so I am not sleeping well. The amount of pain that I am in is unreal. How can a person hurt soooooo much. I am on long acting painkillers with a breakthrough every two hrs if needed & let me tell you it has been needed. It almost seems like I am taking nothing at all.
HOW CAN YOU BE NUMB & HURT SOOO MUCH
I also have had weakness in my arms the last 2-3 days. Putting the lift sling under me is almost impossible. I now have to take breaks when feeding myself. My arm gets too tired.
I am afraid the steroids are not holding me. The symptoms keep coming back quicker & quicker. Without the steroids I am paralyzed from the chest down. I think it is loosing the independence that I worry about. The nurses here are great at doing things for you but it is nice to pour your own tea or get your own pc. Last sept I had to be fed. I really do not want to have to rely on people for that. Wiping my own butt. It is amazing what we take for granted.
I see my MS doc next week. We should decide on the dosing of the chemo. Hoping things will get better. But been told that they most likely won't. The chemo has stopped all of the attacks I was having. It has even made the steroids work better. But been told not to hope for too much.
Been trying to live in the day & not to worry about what "could" happen. But sometimes when you are seeing the "could" happen it is hard living in the now.
I feel like SCREAMING.
You don't have an idea what this venting really does for others. It's so difficult to wonder the how' s, when's, who's. And here we get an insider view, reducing some of the anxieties of the unknown. Simple things like closing the bag, I'll be aware when It's my time. If a can Remember,,,LOL.
So go ahead, scream from the bottom of your heart, have a cry, renew yourself.
Love, Alma
good that you can come on here and vent, not only does it help you, but it helps others realize their not alone
good luck with your doc appointment!
Gentle hugs and joined at the heart, Linda
alma is so right, scream, cry till you can't...
many hugs, connie