Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Someone Who Gets It


#21

WHEN WILL THIS ALL END? The PAIN… my LIFE.
Too much… especially for someone had to be in pain 24 hours a day 7 days a week…

Alone tormented… Sees I am fine. Replys “I’m Okay” when someone ask “How are you?” But really I want to say "I’m better off dead"
It hurts so much! The pain of body aches… The thoughts of I am alone because no one gets it… how complicated the disease is… The ways other people look at you with so much PITY. That I wish I could just sink as other staire at you on the wheelchair like they all want to ask why you are in the wheelchair… Then like I want to have a poster in front of me states “I HAVE CIDP… Don’t ask Google it”

Well I just feels so…
Abnormal… If only I am financially able… I would seek the best doctor and treatments.
As much as I hate “theraphy” I’ll do so.
I would have myself my own wheelchair if I could…
Or in an institute or home where all are in wheelchair and gets it.

I feel so heavy… in weight. But recently my nephew (20s) able to carry me like an infant. Then I realize how thin I look… A bit of a belly though perhaps since I am just sitting all day. I thought the feels of heavy must be because of the numbness all over my body especially lower part…
How I try to walk… and doing my best. I just feels and look awkward when walking. And it is really really really hard… Torture! So much painful at any way I move.

I hate it when they tell me to have Theraphy… or Exercise… Walk… Because they don’t know HOW MUCH PAINFUL! Its like I rather be beaten up by 10 big men or stab with a knife a thousand times or hit by lightning or a truck
Yes! Too much as I said above I perhaps choose death. Easier and maybe its like falling asleep then I’ll feel nothing.

Sorry… I know all of you here wish to live longer and thous seek all the treatment and all the ways to be better. But for someone who is not able… don’t get me wrong though we live fine we are able to afford is just for our daily needs and treatments and meds are to expensive for us and all I have is a second hand borrowed wheelchair. Not asking for your pity… its just I am not able to talk to any one… My Mom (I think) gets it but too awkward. No one else personally to share… someone who even if doesn’t really gets it because they don’t have CIDP but someone who just listen and just listen…

I wish… no one else have this… CIDP. I wish my last day I will feel no pain and its like before… I’ll run jump and walk and feel my feet. I’ll run so fast and wish walk well beside the angels in heaven.

Thanks for reading my pain. Just don’t feel it too much. One sweet day!


#22

Hi Cam, I am sorry that you are having such a tough time. I hope you are able to get help with this so that you can feel better. Glad that you can reach out to others here who understand. It really helps getting feedback.


#23

@Tarhealing

Thanks for the message… I have been waiting for a reply for a long time… Seems seeking for attention… Hoping someone notice.
I am hoping for someone random to speak with… since I am sure most memeber here are not able to go online since they them self are having a hard time with their CIDP. Likewise.

Now a days I take pain killer (over the counter) IBUPROFEN and PARACETAMOL so much… I am afraid I get immune with it. That one day no drug will work. Since we can not afford that hospital medication and treatments. Scared how long this suffering will be.

Anyways would like to know some stories too.
Thanks.


#24

Can any one explain to me about CIDP.
As much as my online reserch goes… The Immune System is abnormally attacking the nerves instead protecting the body from sickness. So if someone diagnose with CIDP takes suppliments that strengthen the immune system… Does it mean it will worsten CIDP?


#25

I thought I was cured but it “always seems to come back.” Still not sure why. Extremely frustrating mentally.


#26

Cam,
I totally understand what you’re talking about. My family is the same way, they think if they treat me the same and expect the same things out of me, that this disease will just go away. It makes it very frustrating knowing that I can’t do half of the stuff they expect me to do and every time I say no, I have to deal with the attitude and nasty comments about being lazy, from the people who are supposed to understand and support me. That’s why I went and saw a counselor who has helped me to realize that, this is my family’s way of coping with it, even though it’s not the right way, of taking the news that their daughter, sister, mother, is disabled and might become much worse, it’s how they cope. I’ve learned to just ignore the verbal abuse when someone ask me to do something that I can’t do I simply say I’m sorry I just can’t handle doing that. I go to my room and let the anger, inside me, go away and ignore them. You might need to have to sit down and have a family type meeting and explain to them that what they’re saying is not correct and hurtful. If you have too, pass out what the symptoms are and the long-term diagnosis, so maybe they can understand what YOU are going through and how you feel when they do this to you. I would strongly recommend getting a counselor to help you deal with, not only the changes in your body, but how to deal with your family and their lack of respect for your disease. I wish I could help more.

Good Luck

Pam Noel


#27

sscarpulla,
I know right… real torture physically and mentally some how just wishing of death some days. But doing my best to look forward for tomorrow. You Get it same as mine.

Pam Noel,
Yes! Another one who exactly “Gets It” Perhaps we have the same type of Family on how they “cope” Some how all I can do is try my best to be “invisible” when ever we have family gathering just not get that so much attention to save myself from all that torturing comments… or just not answer back like I am mute. Well that helps a bit but somehow being alone and unsociable is another torture.
Thankful for this site I can just let out some pain that painkiller meds doesn’t.
Thanks for your story Pam. Wish we can meet for real and the others as well “Who Gets It”


#28

Cam,
I’m sorry I never saw this response. I also wish I could meet someone who really gets it like yourself. There are no support groups down here, so this website has been a life saver. I would like to give you my phone number so we could talk but I don’t know how to get it to you. Hope your doing well.

Sorry for the late response,

Pam


#29

Hi Pam.

To send a private message you click on the person’s avatar and then on the blue ‘message’ box that comes up. Should be plain sailing thereafter!

You will find any replies by going to your avatar on the top right-hand side of the page, clicking on that and then on the envelope symbol.

Christina from Moderator Support


#30

Hi Pam

That is a great idea… Somehow as much as I like to with my current physical and financial condition I can not much go around and travel. Got my old wheelchair all rusty as well. Only on near place I roll to buy needs.
Thanks… A wonderful thought.

It would be great to meet new people who understands who you can talk to in person. Be in a group who will not question or judge. Who can just listen even for a while.

Right now I just feel so weak… I tear up for not knowing why as I type. I wish to run just run going no where… I want to feel tired because I am doing something not just being still I feel weak sleepy. I just want to run far away… or easier sleep without to wake up anymore to feel no more. :frowning: :’(


#31

I love Air Supply! Great song. Sorry you are suffering without treatment! I too have CIDP and it’s been a struggle all the way around. I get it when you say that it’s too complicated to explain. I get the deer in the headlights look every time. It’s tough to manage my disease as a professional law enforcement officer and I’ve been fortunate to manage with treatment. I am getting worse but slower. I am trying to workout to keep leg muscles strong but the writing is on the wall. Cam, what treatment options are available? Did you get a official diagnosis with a spinal tap? I do SCiG treatments at home. Is this availabile anywhere to you?


#32

It has been months since i check in here… Same as usual. Well actually more pain.

I had talk with one of my family member… We talk about my disease and covered lots of topic on it. I realize how complicated it was to explain what is really going on with me with this CIDP. That now matter how detail I can say this disease… All that matters to them is they just want me to go back the way I was before all this happened…

They want me to walk! But in reality I am not able to… coz I gone so weak I am wheelchair depndent. They see me as a BURDEN that if I will not do what they want me to do… I am useless.

They my family don’t underatand I am still “able” I do much on my own even not walking… But No matter how I tell like they don’t listen.

It is just hard emotionally physically… I drown in my own sadness masking with a smile to show all is well yet here I am alone wondering hope there will be no more pain in Heaven… One Day