Reality Hits The Best

Hi Miami Girl,
You responded to my Sad post a few weeks ago. You were so kind with your encouraging words.
I had an awful time tonight getting a shower with my hubby’s help. I just cried I want to go home. I also threw a toothbrush accross the room(that felt really good).
The frustration of computers compounded by this crappy disease is just too much. I can definitely relate.
You are so validated in your feelings of frustration, anger, sadness and just plain old tired of dealing with the everyday inconviences that CIDP causes.
We are all such fiercely independant and want to keep it that way.
Hang in there and vent to those of us who completely understand what you went through today.If it helps to know your wisdom and kind words for me a stranger were very appreciated. Hugs from Texas to Florida for anew friend who cares.
Love and Friendship,
Valerie

Maimi Girl,
We all have our pity party days. I can get them with no reason or logic, all I know is I want my old life back. I’ve always been independant to a fault so relying on others really gets to me also. I live alone and have to rely on the kindness of friends, family and cabs. I try to plan my shopping for the month and get every thing at once but it never fails that I’ve forgotten something or need something that isn’t planned. Then it’s hurry up and wait for someone else to go get it for you or come get you to get it. Really hard when it’s one stupid little thing and you have to wait on it getting to you. One of my major pet peeves, I just want to run to the store that’s a couple miles away but it might as well be two hundred miles. Not being able to drive is a pain!
Vent all you want, so many of us are in the same boat and we understand. I wish I had answer but lacking those I, like the rest on the site, are here to listen and can give a bunch of moral support. Keep your chin up but cry if you need to. Sometimes a good cry helps me get all the flustrations out.
Pattie

Miami girl,
I was so saddened by your post, as you usually seem to be so helpful to others. I have heard you say that after 11 years you are used to your situation, but I always ask myself that deep down are any of us used to this “new norm?” After 5 1/2 years, I have to admit that I still miss my old self greatly. I was so sick & helpless the first 3 years, but then got the ability to walk (with AFOs & a cane) back, & did get my driver’s license back after 3 years. I also got about 75% of the use of my hands back. That was an exciting time for myself & my family members, but that all halted two years ago & I am no better today than I was then. They all seem fine with me the way I am now, my husband & my 3 children. But they will never know how much I miss being healthy.

I don’t think we will ever get over the loss of what we once had, having to depend on others to do things that were once so easy for us. My daughter & 5 month old grandson were up for this past weekend, she wanted to look at all of the old photo albums going back over 30 years. I actually got very depressed, thinking things like “how pretty I was before this illness”, “how thin I was,” “how athletic I was then,” etc. Then I wonder if any of them (my husband & 3 children) realize just how much I have lost, how small my world has become, especially needing 11 hours of sleep at night; even then never really feeling good.

I am not helping you, I just want you to know that you are not alone. I so feel your losses, but each day looks different, & I believe you can come out of this funk. I will live each day the best I can, but like you, when my time comes, I will be ready. I just wish there was something I could do to help you out right now. We are all here for you…
Blessingins, Pam

Hi Miami Girl,
I gotta tell you, I’ve been in such a funk lately and feeling sorry for myself but reading posts like yours and Lindas makes me realize how lucky I am.
Lucky to have found this “Forum”, still be able to walk assisted, and have insurance to cover my medications and IVIG. I’ve been in alot of pain and realizing theres so many things I will not be able to do with my daughter but I can watch her from afar and listen to her stories. It’s just I think most of us miss who we “were” and I am still getting used to being disabled feeling like I’m able and then dropping things or falling down and getting so darn tired!!
I can’t even get mad at people for saying “You look good, what’s wrong with you” when I feel like s..t ’cause I even forget for a moment or two. Then it all kicks in. Anyway, I guess what I was getting at is every now and then we all have a reality check. It isn’t always pretty but with everything going on in this world for me at least it isn’t the worst. I feel blessed to be able to read your posts and wake up every morning. Please take care of yourself and your sister. =)

Love,

Joyce:)

the absolute FRUSTRATION!
While I can still ‘walk’ after a fashion, IT [the tiredness freeze] will hitme without any warning or concern about where I might be or what I try to DO.
I think that the days getting shorter is my own downfall. In the last few weeks I find I am trying to sleep my life away! Somehow sleeping [even tho my meds don’t seem to help me to ‘dream’] is the easiest way to ‘escape’.
Feeling down and beyond BLUE is an OK thing to feel…but don’t let it take you over! Turn it to something positive..those frustrations that is. It’s what you DO with what you now HAVE that is gonna count both now and in that future. Know, that YOU are NOT the only ONE!
Heaps of soft comfy HUGS to you all till this funk is over…then we’ll deal with the next one? Promise?

MG,

From all over the USA, can you feel the arms surrounding you? Our forum members are such a blessing.

Hello Miami Girl,
I can relate to what you are saying. I too am in a wheelchair and pretty well homebound. The only way I’m able to go out is to pay my home care agency because family doesn’t help me. I don’t know what I’d do if anything happened to my computer, it opens up a life for me. If it would help to talk to someone, just pick up the phone and call 1-631-584-0101. I am not a good phone person, but if you leave me your number, I do call back.

I thought a group hug might help.

[IMG]http://img141.imageshack.us/img141/4935/huggiesgroupcc2.jpg[/IMG]

Miami,
I’ve been stuck in bed for four days feeling much the same as you. The absolute frustration of this disease can drive even Batman crazy, and getting those “but you look so good” comments can make me homicidal or suicidal, depending on what time of the month it is. Then too, most days I am really not safe to drive so I get stuck here at home. However, last week I had a friend come pick me up for lunch with some folks I used to work with – it was really nice to go out to lunch except that I got sick. I’ve had a fever of 101.9-102.4 for the last four days and MAN the weakness is SO BAD! Don’t tell my husband but yesterday I fell on the way to the bathroom and by luck managed to miss clonking my head on the bathroom counter by mere inches. And all those people at lunch were constantly feeding me that “you look good” line, coupled with “are you sure you aren’t well enough to come back and rescue us?” Honestly I was too tired to even go into the details with them about why I can’t even consider it right now. Some of them think I am exaggerating my symptoms to “punish” my former employer by not coming back to help out and aren’t really even shy about suggesting it. 😮 Of course I do have a reason other than my illness for not going back – these are the same folks who RAN ME OUT when I got sick and have spent the last 8 months BEGGING me to come back and they can KISS MY NUMB ASS! (sorry if that’s offensive to anyone) But anyone who knows me knows I’d rather be productive than drooling in bed and I’m not all that petty as to refuse my reportedly “invaluable assistance” to get them out of the jam they are in unless I really couldn’t do it, which I can’t right now. OK, I just have to do this once – HA HA HA HA HA HA HA! They hired three people to replace me and STILL CAN’T GET THE JOB DONE! :p OK, forgive me for that little outburst but I feel much better now.

So with that reality, my life has pretty much been confined to what I can purchase on the internet. I rarely leave the house anymore unless my husband is available to push me in the wheelchair – shopping takes a great deal of preparation and planning and since the weekends are the only time my husband can relax I try not to bug him to go out every weekend. I’m trying to come to terms with being a homebody and I totally understand your frustration.

As for the DVD disk – I got confused about this years ago when I was well. I think I would be lost now if someone tried to explain it to me but I might be able to help if you want to explain it to me in a PM. And I sympathize too – my DVD recorder and CD recorder have both stopped running and I’m sure you can envision the amount of effort it would take to get my computer to the store to be fixed. Not to mention my withdrawls from not having a computer – I can feel the shaking starting even now…. 😉 For my backups I have an external hard drive, once a month I take it off the shelf, plug it in, copy all the stuff I want to save, and put it back on the shelf. I don’t keep it plugged in to either the computer or the wall – just in case it gets fried, or someone smarter than me hacks into it.

Oh, and one last thing – I’ve come up with a new standard response for “but you look so good”, I say “thank God, if I looked like I feel you would drop dead from fright.” 😉 and this month “I’m waiting for Halloween before I show my true self.”

Julie

P.S. I hear scientists are talking about teleportation as a possibility now, rather than just science fiction – even if it doesn’t help us in our situation just think how handy that will be in the future for people who can’t drive!

Hi Miami Girl,
My thoughts go out to you! Yes, it is a frustrating disease! But you are not alone, there are others with this disease who know what you are going through and I hope you get some comfort from that. I have had CIDP for a few years now and after my first attack when I was too weak to walk, talk or even move my eyes, my husband of 26 years left me – How’s that for support? He didn’t like the prospects of maybe having to care for me. I’ve actually received more support from this forum, than anything. So hang in there – Just take everyday as it comes and a problem shared is a problem halved.
All the best,
Kazza

Hi all, add my arms into that big group hug!! And Julie’s “they can kiss my numb ass”? rflol

Miami Girl,

I don’t know you situation but can you call someone to take you to the store or on errands? I would love for a friend to call me and ask to take them to the store.

I’m not sure if you can get in and out of cars but just pick up the phone and try it.

If you lived in Mississippi, I’d be happy to take you. lol

Love, Lori

Hi Miami Girl and Julie, I felt so bad reading both of your stories. I really understand your frustration being tied down and always having to depend on others to go places. I am fortunate that my wife doesn’t work. But it’s still so hard that I can’t just get in the car by myself and go where I need to go. Even if I could, the only places I could go are those with electric carts because I get so exhausted walking with my rollator. For me, weakness and fatigue are my biggest problems aside from this terrible numbness.

At any rate, Miami girl, I do know a lot about computers and don’t have much else to do, so if I can help just let me know. Doing it over the phone would probably be the best way. So think about it. I really wouldn’t mind. Here’s my phone number: 970 224 2622.

Take care!

Miami Girl…

You are a rock to many of us here. I join the circle of arms for a hug.

Hang in there…good days are ahead. We get so down we can only go up.

Stacey

[QUOTE=Miami Girl]I might take you up
on another problem…my contrast sign pops up here and again…I did the self test and my monitor is fine…it justs pops up every couple of minutes. My buttons aren’t stuck, so I don’t know what the problem is.
Miami Girl[/QUOTE]

That sounds pretty annoying. I still think it’s the monitor. I assume it is the same sign that pops up when you try to change the contrast on the monitor. Does that work okay? Well, the bottom line is I don’t have an answer off the top of my head. If I had that problem here, I would unplug the monitor from our desktop and plug it into the laptop to test it there. But you probably have only one computer. Of course, you could have the monitor tested at a computer store if you can’t stand it any longer.

I am so sorry you’re feeling crummy.It must be this time of year because I’ve had lots of folks tell me the same. I get the blues something awful.
I’ve be wondering myself who will checkup on me since my dad died this summer. He lived 800 miles away but did call. Will my kitty be okay if I kick the bucket and not found for a while???
I gotta remember to answer like Julie- “What.. I really look okay??? I feel like …or worse…” Why do folks want to say how well I look-what does it take to make them stop??
I started to get sick about 1999-2000 and didn’t go out much so lost contact with friends. They move on when you can’t came out and play. I’ve found that to be true. Making new friends as I get older is NOT easy at all.
Glad you got mega-groceries. I also buy in bulk-laugh at so mnay bags.
Thinking of you, Miami Girl. I may be heading that way soon….be near by….. Kings Creek by Dadeland.

[QUOTE=limekat]Why do folks want to say how well I look-what does it take to make them stop??[/QUOTE]

For as many reasons as there are people alive. I’m pretty good at reading people, it’s my only natural gift, and here are some reasons I’ve deciphered:

“you look [U]so[/U] much better” = “you used to look like you were dying” [I]a genuine relief that I don’t look 2 feet into a 6 foot grave[/I]

“well you look [U]good[/U]” = “you might feel like crap but you still look good” [I]a geniune attempt to make me feel better[/I]

These people really do care, they just don’t know what to say to make you feel better. Most kind and loving people want to help and because most of us, or at least me, try to be independent that doesn’t leave much for our friends to do to feel like they are helping us out in our time of difficulty. My best friend has known me for almost 25 years – she doesn’t ask what she can do, she says “I’m coming up to cook a bunch of food for you and clean your house – is this weekend OK?” Not everyone feels comfortable invading the life of a person with a chronic illness. Some people worry they might invade your privacy, others might worry you will latch onto them like a remora and they will forever be running little errands for you, or they might have so much to deal with in their own lives that adding your troubles to the list would put them over the edge. There are as many reasons as there are people out there, most people DO care, they just don’t know how to talk to you about it.

Then there are these people:

“well you [U]look[/U] good” = “if you are as sick as you say you should look worse” [I]these people get my smart-ass remarks because they think I’m faking it[/I]

Once in a while I’ll take it upon myself to educate these people and the conversation usually starts something like this “you know, I used to say those kinds of things to people I didn’t believe were sick but now that I have a chronic illness I understand that most of the damage is not visable on the outside and I feel so horrible that I made their lives a little worse by not understanding.” Humiliating isn’t it – well that either ends the conversation or begins their understanding and we move on from there.

Of course if you are feeling tired and bitter from hearing that phrase in a negative tone all the time you could move straight into attack mode and say “well looks aren’t everything judging from your suit, would you like an education in disability awareness? I’ve got a couple of tasers in the car – I’ll strap you to a chair so you can’t move and zap you a couple of hundred times so you have some idea what I feel like on the inside.”

Seriously though, most people aren’t trying to be demeaning, they just don’t know what you are going through because they’ve never had a chronic or devestating illness themselves or someone close to them either. Really unless you live with that person every day you don’t know what it’s like, I can put on a good face in public for an hour and of course I do because I’m prideful and stupid at times, so people get the impression that I am better than I really am. My husband who drives me home sees me fall asleep in the car on the way home and spend the rest of the day in bed.

Try not to be too hard on your friends and try not to let the insulting morons get to you – everyone has issues to deal with and most of them are invisable.

Julie

P.S. Can you tell the relapse is over = blah blah blah… I talk too much when I’m feeling better. hee hee (sorry!) :rolleyes:

Yes, I too have gained a bigger appreciation to offer to assist a walking-impaired person (is this a word-did I make a new one up??). My friend’s son liked to direct traffic in WalMart when I was on the electric scooter. He was very protective about me.

I do put on my public face to go out. I tend to smile alot anyway.Most of the time I’m so utterly exhausted the shopping cart is the only thing holding me up till I crawl into the car.

People may not really know what to say alot of the time.Some also can’t grasp the concept.

Now it’s time to nap……………