Cyto toxic week is done
Well the week after chemo is done. I think that is what freaked me out the most after the first time I got chemo. The next day them telling me my body fluids are poisionous to others for one week. I mean how poisionous is this stuff. It was not as bad this time. I was tired beyond belief. It was the same kind of tiredness I felt months ago before in the midist of the attach. The kind of tiredness that makes you hurt & drained just thinking about moving. In a way it was a good experience to let me know how far I have come.
Today I was up for most of the day, I still feel good not over tired or in too much pain. The upset tummy is not too bad either, it is still there but not bad. Meds are taking care of it.
Saw my physio last friday & she said she never seen me so good. The range of movement & strength. I am able to do more and more.
I think I could go home now and be able to function but it is going to take awhile. I know & understand that. I need a lift & the same kind of bed that I am using here at home. I know it is going to take awhile to get the funding. An OT from here will have to go to my home and see what is needed. In part I wonder how that is going to happen. I mean I still do not have the tie-down straps for my chair, I do not know what the big deal is. But without them I can not take the access bus, so I can not go home I can not volenteer, I can not go to a doctors apointment & so on. It makes no sence to me. Oh we will pay for the chair & everything you need but you can not have a chair with tie down straps.Grrrrrr!!!!!!!!!!!! My chair is a hybird the base of my chair is from one company that have the tie downs on the seat of their chairs the seat of my chair is from another company who has the tie downs on the base of the chair so my chair has none. I noticed their new chairs all have tie downs on the base and the seat now but not mine. The guy at the store where I got my chair said they can't do much. So now that it is winter and is cold here I can't go home. Gggrrrrrr!!!!!
I am starting to want to do things but I can't go outside of the hospital because of the weather & no tie downs. It always seems like something that is holding me back.
Anyway it was good to get that out. I am doing so much better, it is now a shorter road home. Now I have to learn how to deal with the daily frustations of having MS. Hopefullly it will be a long time before I need to come back. We are going to have a family meeting in dec. one of the things we need to talk about is coming here for resbit when I get my chemo treatments. So it won't be too hard on my hubby
Today I was up for most of the day, I still feel good not over tired or in too much pain. The upset tummy is not too bad either, it is still there but not bad. Meds are taking care of it.
Saw my physio last friday & she said she never seen me so good. The range of movement & strength. I am able to do more and more.
I think I could go home now and be able to function but it is going to take awhile. I know & understand that. I need a lift & the same kind of bed that I am using here at home. I know it is going to take awhile to get the funding. An OT from here will have to go to my home and see what is needed. In part I wonder how that is going to happen. I mean I still do not have the tie-down straps for my chair, I do not know what the big deal is. But without them I can not take the access bus, so I can not go home I can not volenteer, I can not go to a doctors apointment & so on. It makes no sence to me. Oh we will pay for the chair & everything you need but you can not have a chair with tie down straps.Grrrrrr!!!!!!!!!!!! My chair is a hybird the base of my chair is from one company that have the tie downs on the seat of their chairs the seat of my chair is from another company who has the tie downs on the base of the chair so my chair has none. I noticed their new chairs all have tie downs on the base and the seat now but not mine. The guy at the store where I got my chair said they can't do much. So now that it is winter and is cold here I can't go home. Gggrrrrrr!!!!!
I am starting to want to do things but I can't go outside of the hospital because of the weather & no tie downs. It always seems like something that is holding me back.
Anyway it was good to get that out. I am doing so much better, it is now a shorter road home. Now I have to learn how to deal with the daily frustations of having MS. Hopefullly it will be a long time before I need to come back. We are going to have a family meeting in dec. one of the things we need to talk about is coming here for resbit when I get my chemo treatments. So it won't be too hard on my hubby
Replies
Your issue with the tie downs sounds very frustrating, and for the company where you purchased the chair to tell you there is not much that they can do for you? Excuse me? I would be having a tizzy fit now but you seem cool and collect. It seems like for your life to move forward you must have these tie-downs. I would start screaming and not stop until someone could find the solution. Learning how to deal with the daily frustrations of MS will be a challenge, but it is a challenge that I think you are certainly up for. Hang in there, nice to hear you doing so well. Lynne
On your chemo, sounds like you have that under control and am dealing with all that it entails. Poisionious body fluids? Wow, that must be some powerful medicine! Let\'s just pray that it does what it is suppose to do. Glad you doctor finds you in such good shape and strong. Very positive news.
Good to hear that you made it through the chemo as feisty as ever. That\'s a very good sign. I hope you keep up the pressure on the chair company until they get sick of you and find a solution to the tie down problem. Warm, gentle hugs, Linda
wow poisonous to others, this sounds toxic. I can relate to your tiredness, so extreme its exhausting to think, when I was this bad a five minute conversation would cause me to crash, it is a tired you have to experience to comprehend. cool that the side effects are so manageable this time, remember when your were worried, see I told you were going to be ok haha.
awesome news that your physio never seen you so good!
they build a Frankenstein like chair by putting various body parts together and they cant help you with some simple straps, do these people have a conscious? like ichoppel suggest I would make a loud noise or several loud noises.
so glad your making progress albeit slowly, keep up the good work!