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.
I have spms living in a long term hospital. Have HUGE lesion at T2 causing lots of problems on chemo to try to shrink it. It does not seem to be working. On high dose steroids once monthly. They are starting to ware off before the month is up. I get numb in legs, arms, body and chest. Have been told if the lesion does not shrink enough and or steroids stop working I can stop breathing. That is a HUGE fear of mine.
I did not know how down I get at times until last Mon. The kitchen messed up my meal and everything on the tray I hated. My nurse phone down to the kitchen to get me a sandwich. I was really upset and she asked why. I told her I do not get hungry ever I force myself to eat b/c it is good for me. Eating a balance diet can prevent bed sores it has also helped my energy level.
I eat the same meals every week. The same thing again and again. I told her it may not seem like such a big thing getting the wrong food. I said it sometimes makes me feel like giving up. Just stop eating. give up and let whats going to happen, happen. I am losing function all of the time. I am getting more confused about simple things. If my bathing I forget what comes next. I have been told that it is a possibility I could stop breathing if all symptoms come been asked if I would live on a vent.
I am terrified of smothering to death it is not the way I think of being pleasant way to go. So I was thinking of going on the vent then stop eating.
I do not know if this will happen next month or next yr. It is just all so stressful . Going to see my MS doc this week I am going to ask ?'s about what is going to happen
Sometimes it is hard to keep on fighting going through all of this crap
Sorry for such a neg post
I did not know how down I get at times until last Mon. The kitchen messed up my meal and everything on the tray I hated. My nurse phone down to the kitchen to get me a sandwich. I was really upset and she asked why. I told her I do not get hungry ever I force myself to eat b/c it is good for me. Eating a balance diet can prevent bed sores it has also helped my energy level.
I eat the same meals every week. The same thing again and again. I told her it may not seem like such a big thing getting the wrong food. I said it sometimes makes me feel like giving up. Just stop eating. give up and let whats going to happen, happen. I am losing function all of the time. I am getting more confused about simple things. If my bathing I forget what comes next. I have been told that it is a possibility I could stop breathing if all symptoms come been asked if I would live on a vent.
I am terrified of smothering to death it is not the way I think of being pleasant way to go. So I was thinking of going on the vent then stop eating.
I do not know if this will happen next month or next yr. It is just all so stressful . Going to see my MS doc this week I am going to ask ?'s about what is going to happen
Sometimes it is hard to keep on fighting going through all of this crap
Sorry for such a neg post
Are you able to get access to any of the newer, more aggressive treatments? I just posted about Tysabri. For the first time there is focus on the desperate need to come up with treatments for the progressive phase of this miserable illness.
I think to make life bearable you must find ways to distract yourself. Going outside, getting a DVD player to watch shows that are new and different for you, maybe listening to books on tape that can transport you to another place and time. Are you mobile at all to get out of bed and move slightly - even bed to wheelchair via hoya lift. Keeping blood circulation going is so important to avoid bed sores. Any people your age to relate to there? Do you belong to a church where people can visit?
Almaris makes a good point about getting your wishes clear for any eventuality of leaving this world done now. It will make it easier for your husband and hopefully give you some peace of mind. I have been looking into this and was directed to a site called the 5 wishes. link:
http://www.agingwithdignity.org/forms/5wishes.pdf
It is an American legal document so you would have to find how it works in Canada. The social worker where you are at would hopefully know.
I am just so sorry you have to contend with this. We all hope one day there is a cure for MS, it just can't come fast enough.
And no one can posibly blame you for thinking the way you do. I don't know how stopping eating affects the way you end your life. I did read a story about a 24 yr old on the Christopher and Dana Reeve site who choose this. She broke her neck 6 yrs earlier and really made a valient effort to go on but in the end it was too much for her. But in your case there is still hope. I hope the doctor is up front and honest with you. She/He needs to know what you are thinking. And be direct in answering your questions. Drs are not always good at that so you may have to ask someone that deals with patients directly dealing with these issues.
Don't give up hope and try not to spend time worrying about what may happen later. It may not happen. The best thing you can do is arm yourself with the facts so you have control over what might happen. That way you can make your own informed decisions if the time does come.
I really hope the best for you. The saying live one day at time may sound trite but life is precious and my wish for you is to make the most you can out of every day, living in the moment. And ask your husband or a friend to bring you some treats. Hospital food is usually very boring and not particularly good. In places I have been in they have let me keep outside food in the refrigerator on the floor or in the kitchen.
God bless,
Melanie
Gentle hugs, Linda
hang on!! hugs!!
Think of those that you would leave behind, Dave and your doggie. How would they feel? You can't do that to them, they would be heartbroken beyond repair. Think of your friends at DS, they too would be heartbroken if you were not here any longer.
There is a crisis page on DS. Read my post "Are you in Crisis?" Reading your post breaks my heart. I will send you a pm Lynne
This post is not right and we both know it, and we will settle when the tine comes, T is is so bad to talk about as I want more fotr you tan me, I just want thr best for us, If I;m wrong yell and yell loud at me as I'm sure I 'll yell loud at you, just want to be your best freined
You are a strong problem solver and I am sure you will find a positive solution even if it's another therapy.
Yes you can!
Richard
May today be a better day.
Gentle hugs and joined at the heart, Linda
my thoughts and prayers with you!!
for your support and love.
I am fortunate that I am in the only long term hospital in the area and not a nursing home so there are younger people here.
They have activities for us.
I am in a power chair so I can get around.
The staff make a point of getting us up and dressed everyday if we can.
I do still have blessings.
I have talked to some of the staff here and they know what I am going through now.
Things are going better with the nurses.
I was Just having a down day.
It is sometimes hard not to get scared of what is going to happen
Again thanks for the support
Amy