It is like…
Standing at the Edge of a High enough Building and Looking down at the Street.
The grasp for air… Dizzy but can not move an inch. Legs like jelly…
CIDP for years… Left untreated…
Yes! I am one unfortunate diagnosed with this rare disease in a Country that has no clue what the hell is this “CIDP!?”!
Damn! You… Google it!
Anyways… Am at the Edge of a Building!
Wishing Literally… But ofcourse un able person. I am suffering… in all… physical mental emotional…
Left untreated because financial… So stuck at home… at a wheelchair… at nothing…
With CIDP… I feel like when ever standing up to move from chair to wheels… It is like when you are at the edge of a building so high and looking down… Like your legs are jelly and will fold automatically… Then you are out of breath… dizzy and have to hold on but nothing to… will fall off but trying not to… some what like a nightmare.
True… but others would just think I am delusional and just lazy! CIDP is so worst already physically with the pain… numbness… moving… walking…
Then it gets mental and emotional when people around just throw shits like… you look fine… your just lazy… exercise… move… Damn!
Having thoughts of just ending it all the pains… but even it hurts and hard… mind blows of all this loud thoughts especially at night… no one gets… :’(
They do not know how hard it is… the pain either staying still or moving… doing things I need to and want to each day… how hard and painful to walk…
Trying to Walk is like babies at their first time… just worst because as much at I want to it is extreamly painful. It is like I will always fall… my knees fold on its own… it is like jelly… had to move it by hands or just slide it if smooth surface. Just had to roll it with a wheelchair if could.
In here… if you read this and you have CIDP… You get me… Thanks! If not… just be thankful… Hell is no support at all… no talk to feel fine or meds to move on.
I wish not this disease to any one around me… just…
That was beautiful @Cam! I’m glad that you shared this here. I see it’s been a long time since you’ve posted here. Have you been getting the support that you need, physically and emotionally? I would encourage you to keep coming here. Sometimes even just sharing something like this can be very freeing.
Try 12 years of it You can make it I have and looking for more. My 89th birthday coming up add old age problems to it. It doesnt get better but then there is only one result at the end, I dont want that yet. Not prepared for the future ending.
You said it perfectly. I’m 5 1/2 years into this, 61 and also in a wheelchair. It’s so frustrating to have to explain CIDP to doctors, friends and family. They just don’t get it. Now add small fiber neuropathy to CIDP!! I just tell people my disease is like MS but different and much much rarer. I could stand the mobility problems if it weren’t for the pain. The more I move any body part during the day the worse the pain is. So many pain meds, so many changes to them. If it weren’t for my children and grandchildren I don’t know how I could go on. I keep fighting to stay positive. It’s wonderful to have a group to hear and listen to each other.
Yes! Been a long while… Almost forgot I have this… But been dwelling long. Over flown with loud thoughts… I got so much words till I remember this… At least here some one could get it and reply at least.
“Freeing” … A bit yes till it all comes back. Punch ones and it Punch back a lot and Knocks Out. Damn! the Pain! and the Scars… even it Numbs it Hurts.
“Reply” (on a message) … Is like… When a part of the Body Hurts so bad… Some one massage or rubs on it… Though it still hurts… there is a soothing light breath…
“Who Listens” Right! Thank You…
This is good… Where we can throw thoughts with no judgement by strangers who gets it . Here I can tell all. Not step back because had to think of what they will.
Especially Family…
I feel I am such a disappointment. They make me feel not but I know I am a burden and when they ask what will you do now… I just fold in silence or just change topic as much as I can.
Life for me is pointless… I am just drifting waves… Keeping head up water… pulling down by pain. Till… yet still…
When I had to leave my job I felt such despair. I couldn’t commute into NYC on public transportation. “They” say that trains are wheelchair accessible but they don’t realize what it’s like to not be able to board a train as the walking people ran in front to fill the car and then the train is too high from the platform to board anyway. I gave up trying after 2 weeks since a 40 min commute turned into a 2 hour plus trip.
Luckily my son was still living with me to help with the bills and my daughter was 10 houses down to help care for me. The first 2 years were a nightmare.
I started making soap and this has given me purpose. Especially when I get repeat requests. I give it away as I can’t deal with the process of advertising and shipping. It’s fun, I can do it when I feel well for a few hours. It beats laying in bed as I can’t sit up long.
I realized that I was not going to get better and didn’t want to burden my family. In December I admitted myself to an Extended care facility. The House of the Good Shepherd starts with independent living apartments and ends with a nursing home. I have a lovely small apt and was able to keep my 3 cats. I have people checking on me, I have all my utilities and cable and internet included and I have my meals delivered. It’s such a relief to not worry anymore. At 61 I’m the youngest by far.
It took me a long time to arrive where I am mentally and physically. None of the treatments have worked and I’m ok with that.
I hope that you find something to give you purpose. It’s a new year and truly anything is possible.
Angela
The people on this community get it, pdlc, and we’re glad you are here. No doubt about it, polyneuropathy is one of those difficult “but you look just fine!” diseases. And that’s the beauty of Ben’s Friends: when you are here, everybody understands. Together we are strong.
I’m no spring chicken myself, but I think you must be one of our most, um, “senior” active members. Congratulations on stepping up and learning how to use computer technology to make life just a bit better for you, as well as for the others on the community. I don’t have polyneuropathy (I’m a member of one of our other communities, and I work in administration) and I can tell you, knowing you’re here has given me a lovely positive boost today.
Bayonne Gma, I’m so glad that you’re here, but so sorry that you qualify to be a member of “the club”. What you have done is so difficult: the leap (ha! as if any of us could leap … I wish!) to assisted living is a very difficult decision, but it sounds like you hve landed in an excellent place. I hope you and your kitties are able to live in the independent area for a very long time.
Are you able to do your soap making in your new place? I’m guessing, if you can, you’ll be a very popular resident!
Cam, I’m so sorry things are difficult for you right now, but I’m glad that you reached out here, knowing that we get you. We do. Only too well.
Since you were here last, we have had a change of platform. I’m glad to see you managed to figure out how to post: some members have great difficulty figuring that one out. If you need help using the site, there’s “New User Help” but you can also ask for live help by clicking on About/Contact (upper right) and then on ModSupport: that way you can ask for specific help. (Modsupport messages go to me and my colleagues Sharon, Merl and TJ.)
We’re here for you, yes we are. Take care, and please post again soon to let us know how you are doing.
Hello BG,
I haven’t started making soap yet, but I’m hoping to make a few batches for Valentine’s day. As this is a small facility I’m hoping to make enough for the staff. I have heart shaped molds that will be wonderful.
How are you doing today? Any plans? Angela
I’m fine, Angela, thank you. I’ll send you a PM or before long we’ll be hijacking Cam’s thread. People who do that get into big trouble with ModSupport. Oh wait … that’s me! LOL
@Cam, how are you doing now? What’s happening where you are? You’re in the Philippines, so you are probably in bed by now. Sleep well!
