[Annie59]

I am hoping you might have a sugestion I havent come across for bathing-showering when one is weaker. I so so need a shower but my arms are both offically in worse shape. Injured actually because of how weak.

I have to be showered before Friday when out Christmas is. Yesterday was gonna be my shower day, and I hoped a tanning day. But the reconsideration letter to Civil Rights had to go out to get there on time and with my homeaide here stuff always comes up that arent planned that can be hard on my arms/shoulders.

Thanks for any suggestions. I am way past babywipes doing any good.

Annie59

[redtail]

Annie, do you have a shower chair?? When I was at my worst, all I could wash was my underarms, and just let the water wash off the rest. I had to sit in the chair with my head forward to wash my hair......didn't always work, choking on said water :-~
at least if you have a shower chair you can just sit and let the water run over you, instead of trying to balance in the shower.

[shalynn]

I'm sorry you are having so much trouble with bathing. I'd talk to your doctor about maybe getting an eval by an OT. They can help figure out what you need based on your disability.

Bathing was one of the first areas that I noticed my weakness. Now that I'm on Metsinon I can tell when I need to take a pill based on how easy it is for me to get out of the tub. I usually just sit in the tub, but I could see where a shower chair would be helpful. As would a flexible sprayer for your shower...you know the kind you can move around. I'd see about getting a grab bar too.

I have found that I have to break my hygiene routine up over several days. lol It's not as bad as it sounds. I usually wash my hair every other or every third day. At my age it isn't very oily anymore, so I can do this. I also shave my legs once or twice a week, less in the winter. I try not to wash my hair or shave my legs on the same day. That wears me out!

I also don't always take a full bath or shower every day. Some days I just do a quick soap up of my private parts and under the arms. I know TMI, but that's what I do. I figure those are the most important and hardest to get to areas. I can soap up my arms and face at the sink.

Well, that's probably more than you cared to hear, but this has been an issue for me for some time and this is how I'm dealing with it.

Good luck!

[AnnieB3]

Annie, This may be hard to hear and I may have absolutely no idea what I'm talking about . . . maybe it's time to consider a nursing home or assisted living. From your many posts, it doesn't sound like you can care for yourself well and what care you are receiving does not sound good. There's only so much we can do here for you. Support and encouragement does not get you the doctoring you need or the home care you need.

I'm not trying to be harsh it's that I'm simply overwhelmed by the amount of help you need that you are obviously not getting. I hope someone in your family or a social worker or someone else can help you out. I hope you can enjoy the holidays in spite of what is going on.

Annie

[Stellatum]

Me, too, I'm overwhelmed by the amount of help you're not getting. Even when I'm functioning OK, this disease wears me out mentally because everything I do takes more effort. You are in a place now where even the smallest things take tremendous effort--often more effort than you are physically able to make. I can hardly imagine the toll this must be taking on you.

I'm not making any specific suggestions about what to do--just saying that the severity of your illness needs to be acknowledged. I'm sorry that's not very helpful. I certainly know the frustration of knowing that Something Needs To Change but not having the ability to change it.

I hope that you can enjoy your Christmas Eve in spite of everything, and that things somehow get easier. I'm thinking of you.

Abby

[ginnie]

I am sorry to hear that you have such a hard time with the showing/bathing issues. There is nothing worse than wanting to shower and not being able to do so. Please consider getting help into your home. There are agencies that specialize in home health care. You will feel alot better, if you have someone to help you. I had a friend of mine come over to help me get showers during my recovery. That was a true gift. Feeling clean I think helps your metal state, it did make me feel much better. I hope the holidays bring you some help, and peace into your life. ginnie

[craftyRCC]

Annie,

A shower chair can be a godsend, if you don't have one already you should seriously consider asking your doctor to order one for you.... This may not be the answer to all your problems but it certainly will help!

As always, you are in my thoughts and prayers...

Rachel

[Annie59]

If the homeaid can get up and running better that will help things alot. The first nurse they had supervising my case knew MG and was great. I have someone else now. The aide Tara who was working out broke her ankle 2 weeks ago. Breaking someone else in temporily given I can only talk for so long is hard. A little set back. The agency I had would have been good as I knew that aide but it was a county agency and for reasons that escape me the boss still was resisting my approved 6 hours a week of approved help. I decided it was best to let them go.

This aid part gets my some laundry clean and my groceries bought and some cleaning done/trash out. This is huge. Now it will help me get to appointments and even showered when the kinks are out. the coming months will see improvement. See less stress. I give up on the idea that the university is gonna diagnose me. For now I am focusing on quality of life and individual symptom work. My eyes and my throat are the most pressing. I will learn alot from that. Ending up in an assited living situation sounds like Hell to me personally. That would be the ultimate lose of control. I see what my mom goes thru and cant see myself in that situation.

My symtpoms vary like many with MG. I am down worse now cause of my vit D so low I am alot weaker and of course my eyes. this will change. I have much faith in Wolfe Clinic to find the answer with my eyes it will take a few months to see the first movement doc Feb 2 and then get my cataract done after that. Having my eyes like this is highly frustrating and makes brain fog seem worse. My patiences is low and I am sure that translates into my messages. Its the venting, the sorting out I wish I could do with and old friend that is not available right now.

Having a new focus will help I believe. Time to get adjusted to just the huge changes since March-October will help. I havent had such big losses since that first year when I had the crisis. It leaves one flailing around unable to trust anything. It is an awful place to be with little family support.

Annie59