What did I do
I am doing it again. During the last eight years I have isolated myself. When the MS changed to SPMS & I was feeling sick all of the time. Tired beyond belief, I started not to see my friends as often.
I could not keep my place as clean as I wanted it, so I stopped inviting my friends & family over. I did not have the energy so I did not get dressed everyday & my energy was so low I did not want to deal with people. I hid in the bedroom when someone did come over, let me Hubby deal with them only coming out when they were gone. So eventually they stopped coming. It was hard I felt so bad & my doc kept telling me nothing was wrong. I thought I was going crazy. I was in so much pain I could not sit through church so I stopped going. Now after years of this I am alone.
It has helped being in hospital, they have rec therapy. We get together here in the mornings & afternoons Monday through Friday. At first it was a big deal just going to be around people again, but now I am taking part.
I guess I am thinking about this again b/c even here I stopped contacting people closing in, when I was told I most likely not go home. At first (in sept) I thought the chemo was working. The steriods were not working as long so we (my doc's & me) decided to only take them when my breathing was affected. Back in Sept it happened most of my chest was paralized, so I was given steriods. The time before they wore off after three weeks, so that was what we were exspecting. But they kept on working & I got stronger & stronger. Seven weeks they worked for. When I started to get numb again I got the steriods again so I could keep up physio to keep getting stronger to work towards going home. After 3 weeks I started to get numb again. I finally talked to my doc about it, he talked to my MS doc & I got steriods again. They did not seem to work as well, but I could still do physio, I could move I was just numb. I thought I could deal with numbness, after all I could still move & I was still getting stronger. Over the last month I have started to get weaker. I can no longer do the bike in physio, now physio is only in bed with the help of the physio helping me move my arms and legs so I do not stiffen up. Everyday I am getting number & number, weaker & weaker. My arms are getting tired so easily now.
I talked to someone from home care early Jan. They were concerned about me going home. So we put the OT home visit (to see what equipment I would need) on hold. Now with me getting worse once again it looks like I will not make it home.
I talked to the MS clinic I go to & was reminded the chemo was not to make me better but to slow down how fast I was going downhill. They say some people do get better with chemo but it is mostly to stop frequent attacks, to slow down how fast you are going downhill.
Now I do not know if it is tiredness or what but my eyes are getting worse. It is close things that I have problems with. I now have to read with a magnafing glass. My eyes are ok for distance so far. But reading is my coping. I can not read for as long as I want to.
I also can not move the bottom three or four ribs again. I can not take a really big breath. The last time I took the steriods they did not help much at all. I got some more movement but not much & it wore off in a couple of days. I think I may be getting down b/c I came down with a cold & I am very tired once again.
So before I get depressed I need to reach out. Get involed with more things to open up my world.
I could not keep my place as clean as I wanted it, so I stopped inviting my friends & family over. I did not have the energy so I did not get dressed everyday & my energy was so low I did not want to deal with people. I hid in the bedroom when someone did come over, let me Hubby deal with them only coming out when they were gone. So eventually they stopped coming. It was hard I felt so bad & my doc kept telling me nothing was wrong. I thought I was going crazy. I was in so much pain I could not sit through church so I stopped going. Now after years of this I am alone.
It has helped being in hospital, they have rec therapy. We get together here in the mornings & afternoons Monday through Friday. At first it was a big deal just going to be around people again, but now I am taking part.
I guess I am thinking about this again b/c even here I stopped contacting people closing in, when I was told I most likely not go home. At first (in sept) I thought the chemo was working. The steriods were not working as long so we (my doc's & me) decided to only take them when my breathing was affected. Back in Sept it happened most of my chest was paralized, so I was given steriods. The time before they wore off after three weeks, so that was what we were exspecting. But they kept on working & I got stronger & stronger. Seven weeks they worked for. When I started to get numb again I got the steriods again so I could keep up physio to keep getting stronger to work towards going home. After 3 weeks I started to get numb again. I finally talked to my doc about it, he talked to my MS doc & I got steriods again. They did not seem to work as well, but I could still do physio, I could move I was just numb. I thought I could deal with numbness, after all I could still move & I was still getting stronger. Over the last month I have started to get weaker. I can no longer do the bike in physio, now physio is only in bed with the help of the physio helping me move my arms and legs so I do not stiffen up. Everyday I am getting number & number, weaker & weaker. My arms are getting tired so easily now.
I talked to someone from home care early Jan. They were concerned about me going home. So we put the OT home visit (to see what equipment I would need) on hold. Now with me getting worse once again it looks like I will not make it home.
I talked to the MS clinic I go to & was reminded the chemo was not to make me better but to slow down how fast I was going downhill. They say some people do get better with chemo but it is mostly to stop frequent attacks, to slow down how fast you are going downhill.
Now I do not know if it is tiredness or what but my eyes are getting worse. It is close things that I have problems with. I now have to read with a magnafing glass. My eyes are ok for distance so far. But reading is my coping. I can not read for as long as I want to.
I also can not move the bottom three or four ribs again. I can not take a really big breath. The last time I took the steriods they did not help much at all. I got some more movement but not much & it wore off in a couple of days. I think I may be getting down b/c I came down with a cold & I am very tired once again.
So before I get depressed I need to reach out. Get involed with more things to open up my world.
Replies
oh man so much crap going on with you, i wish i could give you a face to face real hug. i honestly, truly empathize with you...minute my minute. but reaching out again is not a bad thing. one thing a pt person asked me to do was write 5 things i am grateful for everyday. so far i can only come up with 1 or 2, none some days. but it is a good mind stimulator, since mine has become swiss cheese. just smile maybe once today? we can both try to have some faith i guess? connie
Hi Kayce......My name is Dee and I too have MS. I happen to catch your journal and wanted you to know how much it touched my heart. You are such a strong woman and I understand what you mean about isolating away from the world.
Has your MS doctor talked to you about IVIG......I know it was something I was facing if we didn\'t get my MS slowed down and thank the good Lord it did. Here is wishing you a better day.
Dee
Is there any chance you could reach out to any of your old friends, just one maybe? You really need to have a face to face friend, not just DS friends. Don\'t get me wrong, we love you like crazy but sometimes that\'s not enough.
I know it would be a big stretch, but what have you got to lose?
Gentle hugs, Linda
our church meets on thurs as well as sun i could not get an access bus for sun being the winter the bus is allot busier so today i tried to get a bus for the thurs meeting and I got it.
so two weeks from now I will be with old friends
and hopefully make some new ones as well
That\'s a really big step! We have Thursday and Sunday too but I live in the boonies and there is no bus service. We have deer and the occasional mountain lion come by but that\'s about it. I don\'t think I want to hitch a ride with them. LOL