AnonymousMay 18, 2008 at 1:51 pm
Hi to all. Guess I’m in a low place. All family is gone. Expected more from 10th phresis. Some improvement, but not near what I thought would happen. I can goose walk about 35 feet without the walker.
Able to stand ? 2 minutes. Feet still numb to ankles, tingling, pins and needles.
Greatest difficulty is attempting to overcom3 fatigue, exhaustion, etc. The littest chore and I’m done. Took one and half hours to clean a very small bathroom yesterday due to having to take freq. rest periods.
I keep hoping for ? 75 to 80 % return to normal and it is not happening. Seven months of ups and downs. Of being cheerful with others and continuing to attempt to live a partial normal life.
My brain says I can do it and my body will not allow it.
Prednisone playing holy heck with the emotions. The high dose I’m emotional and down in the dumps and wheepy, the lower dose some improved.
Guess it is like a lot of people on this forum. We do not want to be this way and not a diddley darn thing we can do about it.
I’m having difficulty imagining my life over the next ten years like this and at present it seens overwhelming. Not to mention it really screws up David’s life.,
Thanks for listening. Hopefully this is the high dose of Prednisone for today and AM will feel different. Hate to think I’m truly going more depressive.
Beth in Florida
ANti-Mag IgM with CIDP Presentation, Nov 2007
AnonymousMay 18, 2008 at 7:20 pm
Sorry you are down – I have found when I get to the crying (everything seems so overwhelming) stage it’s because I am overdoing things.
You know what I have found to help me cope (other than chocolates, or a present from myself to myself!) – I just take everyday as it comes. I know that is easier said than done but after years of living with CIDP I have had time to perfect it! I think, with any chronic illness there is a certain amount of ambiguity regarding the future and that is what is so darn annoying!
It takes me ages to clean the bathroom/house too! Thank goodness I have a smallish house!
Well, I hope you are feeling better soon Beth – I also hope you can get some comfort from the fact that others know how you feel.
AnonymousMay 18, 2008 at 10:49 pm
thanks for the input. I know I have to limit what I do or I fall flat on my face
Just to be able to drive to a store, enter it, buy somehthing, and return home would be a miracle.
Think at times, my body is telling me learn to live with these limitations, they are not going away, so deal with it.
My head wakes up every morning and i think i’m going to do this and that, etc. It is when I attempt to stand I realize, Yes, dopey, you still have CIIDP.
and no you are not going to be able to accomplish what you want today.
It is nice to know that some people expoeriences all of these things at one time or another.
As great as family and friends are, they really do not understand how fatiguing or limiting this disease is.
Thanks for listening
AnonymousMay 19, 2008 at 10:10 am
Beth, hang in there. It sure is frustrating having this disease. My partner yesterday almost broke down because she has to now do almost everything. I used to be able to vacuum, do the wash, etc. and help out with other household chores but now I am reduced to doing very little. I use a cane in the house to walk and have to be careful if I bend down. If I fall, I won’t be able to gt myself up. My legs are just too weak. I was diagnosed with CIDP last Sept and have gone through 4 months of IVIG with no positive results, then we tried 70 mgs a day of Prednisone, then 100 mgs and still nothing positive so just this past weekend I was weened off of the Prednisone (dropped 10 mgs every third day). I just finished up 5 treatments of Plasmapheresis and am hoping something positive will come from that.
Yes, there are quite a few of us on this forum and there are some that are worse off that us. There are quit a few success stories too and I am hoping that I will one day fall into that category.
So, hang in there Beth … we have to try to stay positive.
AnonymousMay 19, 2008 at 12:47 pm
I’m sorry that you have to deal with this awful disease. My husband John couldn’t take a single step without his walker until more than 6 months had gone by, but now he drives, gardens, and goes fishing. He still suffers with pain and fatigue every day, but he’s worlds better than he was.
David is probably frightened about the future too, since none of us ever knows what the long-term outcome will be. Try to think positively…there are wonderful stories of recovery here on the forum…
AnonymousMay 22, 2008 at 7:51 pm
Oh dear Beth,
If you have read any of my posts from the last year you will see that everyday was like climbing an escalator that just kept going down. It has been a full year since I started Methotrexate and a month ago was the first time I actually had energy to match my mind. And though I still have fatigue and days when I can’t do as much, I am getting more of the good days. So there is hope. It is so insidious how long it takes to get better. I know each of us is different and some improve more than others at different speeds, but it seems we all improve to some degree and you will too. I know how hard it is to wait and be so held back and wiped out and now I guess I am prepared to accept that there may be a time when I will decline, but I know now the possibillity to feel better is real. I hope it helps you to know this too. Keep letting us know how youre doing.
AnonymousMay 23, 2008 at 11:20 am
Oh Beth, I hope you’re feeling better by now. I don’t know how I do it but I don’t have the blues very often even so I would have all the reason in the world. Yesterday I had to go into the basement to reset the timer for the sprinkler system. The only way I could get down there was by sitting down on my butt advancing one step at a time. 😀 it actually was pretty funny. Since coming back up is even more difficult I tried a new approach. I got on my knees and worked my way up that way.
Can you picture a 75 year old who doesn’t look frail at all doing that?:D
Take care – from one anti-MAGer to another.
PS you know I’m using a voice recognition program. It comes up with the funniest things sometimes. When I dictated anti-MAGer it typed anti-maggot.
AnonymousMay 25, 2008 at 4:56 pm
Hi Beth it is a tough road but you can do it every little step helps, I found starting with small things tub only or sink only take the rests that is what helps the body regenerate its self, baby steps and as for the mind well the body lets it know whos boss,lol it well all come back it takes time and your body will let you know when youve done to much listen to it. But keep on truckin cant keep a good person down Brenda
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