Bad week; dark thoughts!!!
This has been a bad week for me. I have a hard time with one of the nurses. I do not think she likes me or may be something else is going on. Last Mon. she was helping me wash up for the day. She always cuts corners, & hurries. She does not do a through job & does it so fast it hurts. When I ask for things to be done better she tells me I am complaining & she gets worse. On Mon. I was having a bad day with the heat & asked for ice chips it cools me down quickly. When I get too hot I get confused & I get sleepy. Last summer I feel asleep from the heat & stayed asleep until someone figured out that I was too hot & packed me in ice that was at the medical hospital not where I am now. I try not to get that bad to eat the ice before it gets too bad. I told her I was getting hot & needed ice but she refused to get me any. Moving around, turning over during the bed bath makes me even hotter I told her I was getting very sleepy & was afraid I was going to pass out her response "then pass out" by the end of the bath I was in tears. B/c I was hot for so long I spent all day Mon. & most of Tues. kind of foggy. When I got up she told me she would get me ice when she had time. I got my own ice & she never did get me any. Later that day when my Hubby came in she was in my room for 15 min's talking so friendly & being so nice.
Also that day the food people did not stop by my room to get my order for lunch & dinner. For lunch I got something I did not like so the nurses phoned down & got me something else. Of course for dinner I got my tray & did not like anything. By then I was very upset & found something out about what goes on in my head. My nurse asked me why I was so upset. I told her that it is hard enough to eat the same meals every week. I do not get hungry so I force myself to eat. But when I get stuff I could not eat even if I was hungry. I told her that I have been thinking about stopping eating so I can die quickly & not a piece at a time. She did once again phone down to the kitchen to get me a sandwich & grapes. I was watching TV & eating the grapes at the end of the meal. Half way through I popped a grape in my mouth, bit into it & there was mold on it. I spit it out. I am allergic to mold depending what kind it is I get a rash at min but some of them make me stop breathing. This time my face & neck turned very red, that was my Mon. today the left side of my face & neck is still red. The supervising nurse wrote out a report about it & was going to talk to the manager of the kitchen.
Tues. was a bit better with the same nurse. I got washed by a psw not her. I write down all appointments on a dry erase calendar. I can not see it from my bed. Once I was up & dressed I found out I had an outside appointment. I asked the psw if she could help me chance my pants as I was waring pants that only went to my knees & it is still winter here. She got busy then a fire "drill" burnt toast. She forgot she went home at 11:30 am I asked my nurse if she could help & said no in a snippy way. She told me I could not leave these things to the last min. I told her that I asked the other girl allot earlier & was told well she was busy. I put a quilt over my lap but it is not made for that. At one time during my outing my quilt came off went under the wheels on one side & almost flipped my chair.
During this time my MS symptoms got worse the steroids wore off. So I am very numb including my chest reminding me the chemo has not shunk my lesion at T2. I got a new symptom in the last month. I have had it before yrs ago but it is back. I get very small jerks in my hands. Not bad, but a month ago I started to drop my diabetic needles mostly on the floor. Once during a shot I dropped it, the needle changed directions. The needle could break off when that happens, the nurse was here for that. She sujested I let the nurses give me the shots.
The last week or so I have been dropping more things. My sliverware, I do not feel or see a jerk in my hand I just drop things. It has gotten worse over the last few days. I now drop pens, crochet hook, silverware, the soup bowl I was holding, a cup of hot tea. My nurse tonight sujested I talk to my OT about getting a strap to hold the silver ware. I am now using cups with handles so I do not drop the cup.
I guess that is why I was in such a dark place. I am slowly getting worse. The chemo has stopped new attacks but it has not shrunk the lesion at T2. The steroids are helping. I was told they would stop working one day. The MS doc does not know when that would be. Two weeks after I take the steroids my chest get numb in places. The bottem two ribs do not work my muscle will not move them. At time off & on during the day my upper chest goes partly numb. It is a scary reminder that in the future I could stop breathing. That terifies me more then anything. When I talked to my psychologist today I told her if I was going to stop breathing I would go on a vent then stop eating. Smothering is to bad a way to go. For now I keep fighting for my Hubby. I am what keeps him going on. He told me awhile ago he feels like giving up. Not to fight anymore. Like I said dark thoughts.
I am now feeling better. My psychologist does not think I am depressed, she thinks I get over whelmed. When things start to go wrong. The nurse acting the way she did, my symptoms getting worse, the food , then the mold, lack of sleep, increase pain, & Bruce not doing well. She said it was enough to drive anyone over the edge. She asked me if I had a plan to kill myself. I told her no I just wanted to give up. She told me there is a difference, & to give myself premission to have bad days. She says it is good that I moved on & is bad in a good frame of mind. She did tell me to go to the head nurse about that nurse. She said she was not professional.
Tomorrow is a new day.
Also that day the food people did not stop by my room to get my order for lunch & dinner. For lunch I got something I did not like so the nurses phoned down & got me something else. Of course for dinner I got my tray & did not like anything. By then I was very upset & found something out about what goes on in my head. My nurse asked me why I was so upset. I told her that it is hard enough to eat the same meals every week. I do not get hungry so I force myself to eat. But when I get stuff I could not eat even if I was hungry. I told her that I have been thinking about stopping eating so I can die quickly & not a piece at a time. She did once again phone down to the kitchen to get me a sandwich & grapes. I was watching TV & eating the grapes at the end of the meal. Half way through I popped a grape in my mouth, bit into it & there was mold on it. I spit it out. I am allergic to mold depending what kind it is I get a rash at min but some of them make me stop breathing. This time my face & neck turned very red, that was my Mon. today the left side of my face & neck is still red. The supervising nurse wrote out a report about it & was going to talk to the manager of the kitchen.
Tues. was a bit better with the same nurse. I got washed by a psw not her. I write down all appointments on a dry erase calendar. I can not see it from my bed. Once I was up & dressed I found out I had an outside appointment. I asked the psw if she could help me chance my pants as I was waring pants that only went to my knees & it is still winter here. She got busy then a fire "drill" burnt toast. She forgot she went home at 11:30 am I asked my nurse if she could help & said no in a snippy way. She told me I could not leave these things to the last min. I told her that I asked the other girl allot earlier & was told well she was busy. I put a quilt over my lap but it is not made for that. At one time during my outing my quilt came off went under the wheels on one side & almost flipped my chair.
During this time my MS symptoms got worse the steroids wore off. So I am very numb including my chest reminding me the chemo has not shunk my lesion at T2. I got a new symptom in the last month. I have had it before yrs ago but it is back. I get very small jerks in my hands. Not bad, but a month ago I started to drop my diabetic needles mostly on the floor. Once during a shot I dropped it, the needle changed directions. The needle could break off when that happens, the nurse was here for that. She sujested I let the nurses give me the shots.
The last week or so I have been dropping more things. My sliverware, I do not feel or see a jerk in my hand I just drop things. It has gotten worse over the last few days. I now drop pens, crochet hook, silverware, the soup bowl I was holding, a cup of hot tea. My nurse tonight sujested I talk to my OT about getting a strap to hold the silver ware. I am now using cups with handles so I do not drop the cup.
I guess that is why I was in such a dark place. I am slowly getting worse. The chemo has stopped new attacks but it has not shrunk the lesion at T2. The steroids are helping. I was told they would stop working one day. The MS doc does not know when that would be. Two weeks after I take the steroids my chest get numb in places. The bottem two ribs do not work my muscle will not move them. At time off & on during the day my upper chest goes partly numb. It is a scary reminder that in the future I could stop breathing. That terifies me more then anything. When I talked to my psychologist today I told her if I was going to stop breathing I would go on a vent then stop eating. Smothering is to bad a way to go. For now I keep fighting for my Hubby. I am what keeps him going on. He told me awhile ago he feels like giving up. Not to fight anymore. Like I said dark thoughts.
I am now feeling better. My psychologist does not think I am depressed, she thinks I get over whelmed. When things start to go wrong. The nurse acting the way she did, my symptoms getting worse, the food , then the mold, lack of sleep, increase pain, & Bruce not doing well. She said it was enough to drive anyone over the edge. She asked me if I had a plan to kill myself. I told her no I just wanted to give up. She told me there is a difference, & to give myself premission to have bad days. She says it is good that I moved on & is bad in a good frame of mind. She did tell me to go to the head nurse about that nurse. She said she was not professional.
Tomorrow is a new day.
Replies
So sorry that you\'ve had a bad time of it. Praying your days are better and that the nursing staff becomes what it should be...caring. I\'m thankful you are feeling better after your talk with the psychologist.
Yes, it\'s a new day and hopefully a better one for you. Sending you love and heartfelt prayers.
Gentle hugs, Linda
Seriously, Kayce, if I was closer, I\'d come up there and kick some ass for you. I\'m sorry about the language..... this is not acceptable. Good grief..... enough is enough...... Since I can\'t actually come kick some butt, I\'ll pray that someone else kicks those nurses butts for me. I\'m praying for you that you will be feeling better soon and getting appropriate and GOOD healthcare, which is something EVERYONE deserves. Hang in there Kayce! Love ya and sending you big hugs!!!!!
Amy