? mind numbness
AnonymousMarch 5, 2008 at 3:33 pm
Hello all, I seem to be going through a period of mind and body numbness. No change in any symptoms for four months. Standing is getting extremely difficult. And the zaps and zings continue.
Getting PT/OT 3 x a week at home.
Problem is me, I’m just so mentally tired. Like who cares, leave me alone. I’m on an anti-depressant. Whole hours seem to slip by and I have no idea where they have gone. It like I can not think of anything or hold concentration for very long. Can just vegetate in a chair with a cat on my lap for hours on end. Find this disconcerning as I used to be the typical type A personality. When first dx I was gun hoe, that OK, lets do this and that and i can still accomplish this and that.
Now that there is no improvement and everything is taking an extreme effort to accomplish, it like i’ve stopped or ran into a road block.
I do my exercises each day and have to force myself to do that.
It is so difficult to get out of the house that i have went no where except to medical appointments for the last four months
Dave, has built new shorter steps where i can get out of the house easier and back in there has to be a chair at the last step or i will fall. Have fallen 10 times this month.
Has anyone else went through a period like this?
What helps get one out of it.
Maybe I just needed to whine.
Thanks to all that listen
CIDP, Nov 2007
March 5, 2008 at 5:24 pm
I am so sorry for your sadness in the day. I do not have cidp, so I cannot even begin to understand your physical struggles, but I do understant your emotional state. These 18 months since Kevin’s dx have made me wonder….day in and day out. Sometimes the hours drift away on here and I seek solitude and company where I know I am understood. I hope for better days to come, maybe the start of the spring season can spring us both into a happier place.
Is it possible the anti-depressant you are on is causing you to have these feelings? Are there any new meds you are on? Maybe the doc could suggest a switch. My prayers are with you today for a stonger day tommorrow, both in mind and body.
AnonymousMarch 5, 2008 at 6:05 pm
Thanks for the encouragement. This too will pass. Guess i just need to know others experience these moods once in a while also.
When i think of what you are going through on a daily basis with Kev, I just wonder where you get your strenght. It has to be from God. Also, makes me a little ashamed of my whining.
CIDP, Nov. 2007
AnonymousMarch 5, 2008 at 9:24 pm
Beth, You sound normal to me. We all have to except different life changes, if you don’t except than I would say there might be a problem. Whine as much and as often as you need to—we all understand! There is nothing wrong with just sitting around, conserving energy, and taking life easy and slowly for abit. I do it more and more myself–especially during my relapses. Take care.
AnonymousMarch 6, 2008 at 12:22 am
You are definitely not alone. Last year when I had to give up my business and stop working all together, I was at the lowest point ever in this six year challenge with this diagnosis. For five years I was able to push through my days and keep up my work but when I was rendered literally unable to move last year I was devestated. It still is after a year difficult for me mentally to completely accept. I found that you go through stages of grief in accepting the limits this condition imposes on the body and mind. Allowing myself to feel this, express it to others and to let go of guilt about feeling so bad has allowed the proecess to go easier. It has been a year and I am much better at letting my body dictate the day. Some days I sit for hours doing nothing, others I am more productive. Moderation is the key and respecting what the body is saying is the most important lesson to master. You have been through a lot!! Be gentle with yourself. And keep sharing.
I am thinking of you.
AnonymousMarch 6, 2008 at 4:43 am
Here is what I think – our bodies are going through a great deal of changes on a daily, if not hourly, basis. Our brains are getting a lot of confusing input due to damaged nerves, and our nerves are having to work harder to do the same things that were easy before they were damaged.
Something I learned in college a thousand years ago has stuck in my mind “Maslow’s Hierarchy of Needs”. (go here to read about it in Wikipedia: [url]http://en.wikipedia.org/wiki/Maslow%27s_hierarchy[/url]) Personally I think Maslow was an idiot re: his perception that damaged people have a damaged psychology but the point of the hierarchy has kind of stuck with me. Right now we spend so much time trying to assure that our needs for physical wellbeing and safety are met we don’t have the time or energy to delve into higher order thinking. When I’m concentrating on not falling down, I’m certainly not thinking about when I’m going to be able to get back to work.
That being said, I’m not discounting the possibility that our lack of ability to concentrate, memory loss etc. might not have an organic origin – though I think I’d prefer to just think it’s because my body is too busy fighting this disease to spend time remembering long division. 😉
AnonymousMarch 6, 2008 at 8:21 am
[FONT=”Comic Sans MS”][SIZE=”2″]Beth,
It’s okay to daydream, zone out, wool gather, whatever you want to call it, it’s all part of the healing process. You are just looking inward, maybe seeking answers or simply being still and peaceful. Think how folks who are trying to learn how to meditate would envy you!;)
One thing i know about Type A’s, being one myself is that it’s so hard to let go of control over anything including one’s own body. Your mind is screaming ‘How can this be? I used to be able to do this or that, now I can’t remember whether I fed the cat, let alone how to fill out this form! and so on’
In the film ‘Whatever Happened to Baby Jane’ Joan Crawford’s character is saying something about “If I weren’t in this wheelchair I’d…..”, Bettye Davis comes back with “Yeah but ya are Blanche, you are” And that, in a not so profound nutshell is what we have to realize.
It’s time to let go and let other’s ‘do’ for us.
When I told my ex, who lives on the other side of the Continent, that I could barely concentrate long enough to read all the forms and documents that needed to be dealt with, [I]forget[/I] filling them out! can’t hold onto a pen let alone write! Bless him he stepped in and has been taking care of all that ever since
Then there’s my neighbor who brought me a wheelchair and walker when i needed it, checks on me all the time and even emptied the slop bucket i was forced to use once or twice 😮 Now that’s friendship!
My point here is that even in those matters it is so hard to let go and let others take care of the things we cannot do for ourselves [I]at this time[/I].
This site has helped me heal with good advice and laughter, it’s like having a whole room full of Best Friends who listen without judging, are there for you all the time, and will leave you alone when you need to be. Bonus: everyone here has been through the same thing so nobody will ever accuse you of whining, would your Best Friend? No way!
So go ahead and talk, question, whatever you need to do and if you need a laugh go look on the forum ‘The Lighter Side’ and follow the thread “The Tavern’ I guarantee you’ll be rolling on the floor laughing after the first few pages, and laughter is a good thing, no?
I wish you well Beth, here’s a great big hug[SIZE=”6″][COLOR=”DarkOrange”] ( )[/COLOR][/SIZE]
AnonymousMarch 6, 2008 at 7:37 pm
After my first attack of CIDP (5/6 years ago) everything felt surreal. It was as if everyone was on speed dial and I was in slow motion. It was so wierd! It lasted for a few months. I didn’t have a diagnosis then – so I had no treatment for my CIDP. Ever since then I have trouble with feedback from my body to my brain about how I am feeling – all my senses are dulled – but it’s nothing like the numb feeling (mind and body) for the first few months after the attack.
Beth, I was always a hyperactive person before CIDP but that has changed – I have learned (the hard way) to take things easy or else I’ll pay for it the next day/s. I have come to accept that now (took a while) but am definitely less stressed.
Rest, rest and rest…I know you have probably heard this a million times already -but it really helps especially with the weakness.
March 7, 2008 at 8:54 am
I was checking in to see how you were doing. I hope better. I would not say you are whinning, I would say you are exhibiting normal signs of stress from this gbs/cidp nightmare. We are all confused, sad and mad at times. Luckily, we at this sight have compassionate people who care about others, it is more than just a web site for medical info. I have been on other sites for cidp, ms, and other diseases, and this site really is a wonderful group of people.
If you think about it, I am the selfish one always whinning, I have my health for the most part and I come to you guys for emotional support. I have to try working on not burdoning you guys with my problems and focus on just Kevies problems and your guys problems.
Well, have a nice weekend, and I will be thinking of you!
AnonymousMarch 8, 2008 at 5:00 pm
Thanks once again for all of your informative replies. Looked up side effects of the two new meds i was started on two weeks agao and they can cause some of the symptoms. MD says it will pass in time, takes the body time to adjust to B/P and Blood sugar meds.
Also, have found if I do too much, the next day I’m in a daze. We had a lot of company for awhile and that is when the mind seemed to just zone out. So it may be a combo of meds and exhaustion. My body exhausts easily and does not recover in one night. I need rest periods during the day.
So, will wait to see if I adjust to meds and take better care of myself.
CIDP, Nov 2007
AnonymousMarch 9, 2008 at 5:41 am
Don’t take this the wrong way but it could also be the company. 😉 Seriously though I tend to get over stimulated when there are people around me and my brain will take a vacation on it’s own to control the sensory input. I went out last week for the first time in half of forever – went to ladies night at the local Eagles club – and I didn’t last long trying to follow the conversations of 4 people while whipping my head around to look at each person talking. After 45 minutes of this my eyes were hurting, my ears ringing and I was saying “huh” and “what” every other word, not to mention I couldn’t hold my head up anymore because my neck muscles were tired. There was so much going on I had a really hard time understanding what they were saying to me – and my brain continually wanted to shut down to control the stimulus. After another 30 minutes of fighting this my brain just said “fine then, go to sleep” one big yawn later, my friend drove me home, and that was the end of THAT night. Our brains are amazing things and I continually marvel at the lengths they will go to to be self protective (and self deceptive but we don’t need to go there…)
I was talking Friday night with my husband and a friend of his – I’m thinking an astronaut’s helmet is what I need. I need something to dampen the visual and auditory input but I can’t have anything touching my head because my cranial nerves are inflammed – so Harpo (my HB’s friend) says an astronaut’s helmet because it rests on your shoulders. Anybody know where I can get one of those? Anybody want to take bets on how long it would take for me to be swept up for a psychiatric evaluation? LOL
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