feeling down and sorry for myself.

I can relate. I have been getting bouts of depression. when I am not depressed, I can have all kinds of weird symptoms and I just shrug it off and say that this is going to stop when I finally get treated for whatever it is I have. when I am depressed, it changes the whole way I see things. I have a very grim point of view and I cant see the upside to anything accept that I can intellectualize that this is jsut my depression talking and I know its going to pass.

[QUOTE=jojo87]just feeling down and depressed. still having problems with incontinence. Now my stomach is hurting. numbness is prticularly strong today. Now my sleep apnea machine is causing me to have nose bleeds. I feel like a big whiner. christmas was good with my family. my neice came for a visit. My sister and brotherinlaw as well as my neices fiance. Maybe i am worn out from all the festivities. I feel overwhelmed and tired. Sometimes this gets to be a lot to deal with. Still dealing with a kidney stone. have to have lithotrypsy again. It must be taken care of before i can h ave IVIG. And Medicare hasnt said they would pay for it any way. I try to push through and do things but it exhausts me mentally and physically. I went to the Y with a friend today abnd worked out for about an hour. yesterday went to the movies with my friend and her mom and dad. she wants to go to a comedy club for new years eve. I want to get out and do things but i just get so tired and nobody understands it. they think i am lazy. as my friend puts it we just want to run oand play like the other kids.(she hurt her back and now has some health issues)[/QUOTE]

OMG….totally get the pitty party piece, I’ve been having one for about a month! Sometimes things are just harder than they need to be, and with no energy to deal with the hardships and physical, pain and exhaustion, I think this is pretty normal. I want to run around and play like the other kids too, not spend the rest of my life in bed. 🙁 Hope you can find the strenght to get through this difficcult time.

jojo,

Sorry to hear all that you’re battling (as if CIDP wasn’t enough). You’re right most people have no clue what we go through and don’t understand. The people here do. Thanks for sharing. I pray you will be encouraged through the foundation discussion boards and that you’ll get relief from CIDP and your other challenges and be able to find joy.

I am encouraged that you are able to go to the Y and work out,go to the movies, and hang out with friends. You are blessed, so many cannot do these things.

Here’s to a blessed 2010 for you, cheers!

Gary

You must be one of the reasons I visited this site today. Here I am in my own Pitty Party when we could have been partying together all along!:p
But really, I came on this site in tears today. You are so right! People don’t understand that we are sick. Fatigue/exhaustion are not the same as lazzyness it is part of our disease! People are quick to judge by the look on our face and say, wow, she looks good when inside I am wrapped in pain. I explained today that because of this disease, I am putting away my big smile for a little while and stop pretending to the outside world that I am well. I am going to reserve that smile for my kids and my husband. Usually, it’s the other way around. The strangers get the smiles, my family gets the tired, hurt, grumpy, short tempered me. I am tired of justifying my actions. Yes I just woke from a 10 hour nap and I’m tired! It’s a bad day! And you with the family and holidays! I love them and all but they are exhausting! So the festivities are over and you have less than 20 to bring in the new year. Make sure your pitty party ends before 6 so you can start getting yourself ready for the new year! Even if it is at home on the couch…… Dress up… It will out a smile on your face. As a matter a fact, I think I am going to do the same! I am going to put on a dress and dare I say heels and sit on my couch with champange in my glass and have a toast with my husband for a healthy new year! You and this site will be in my thoughts when the glasses touch. 🙂

Being an entertainer, I always have to be “on” and smiling and I tend to let that go when I’m at home. So thanks for the reminder! With all my husband does for me….he deserves my smiles also!

Sounds like a New Years resolution!:)

Lori

Thanks also for raising this. The holiday season is tough because there is so much to do and so much that we want to do. Also, I kind of accept that people do not understand when you say things over the phone, but being with family and friends is a different matter. I started the day in tears because I just wanted my twin to understand at least something about this neurological fight and he does not–he does not understand that it is a struggle to walk, that I cannot do all the things that I used to be able to do and have to reorganize my life to be able to do what I can do–to do things and take breaks, nor the tremendous impact this has had on my self and belief in self since like many of us I have defined myself by what I can do. We walked so similar a path in life for so long that it is really hard to know that he does and cannot understand how this path has changed for me. I am coming to terms with trying to live differently and trying to focus on what I can do rather than what I cannot do, but I have not found a way to not feel very alone in this journey.

My tiny suggestion for you is to make tomorrow a stay home and cuddle day with your hubby. It will be good for you both.
WithHope for rest.

Honestly, I had a neuropathy set back…big time this summer that drastically altered my life for the last 7 months. I’m now daily regaining strength thru PT and exercises to be done at home and While I’m not blasting forward progress-wise at the speed of light? I’m not ‘regressing’ too much either.
I see the ortho next week, and will plead for more PT! My balance is beyond shot! So go and give your special other a giant HUG from me…and you too!
About feeling sorry for self? Well, you gotta sit yourself down and really look at the ‘options’! Wheelchair? Not thru some parts of my house…and I guess many others’. Scooter? Even worse-HOW do you get the thing down the step to the house [fire/safety code stuffs] and then into a vehicle to get and go somewhere? My! It’s way to complicated! I don’t know about any other of you? But I know I DO NOT want to go out quietly! Especially about Having people come up to me ‘speaking louder’ as if I can’t hear well either!
YE! I ask myself at down times: WHY ME? But then Why Not? And What makes ME so special? If I’m slower getting around, so be it. If I’m not as easy to stay up and have ‘fun’ with?[Tend to doze off mid-sentence?] Take me as I AM! I am NOT going to pretend things are fine, I’ll find ways to do things ‘other ways’. Such as shopping on-line, or doing grocery shopping the same way? I Will challenge doctors about some decisions and biases – armed only with facts and I will seek the best I can get out of all the medical resources available to me! Do NOT ever pity yourself! You got a bad throw of the ‘dice’ so to speak. We all have here. Tho, yes, you can feel down now and then? But PLEASE PUT UP A GOOD FIGHT! Thru this effort? You gain doc’s respect and then THEY in turn can start working really on your behalf. Thing is to put yourself in an informed position to make them WANT to work for you!
So yeah, you can feel overwhelmed, at times? But now? Get MAD And declare WAR on this CIDP!
My heart is with you thru this journey. I’d done it alone, not being web-wise at the time. But, I’d found out later that others have ‘done’ this route and are somewhat in sync with my feelings. Keep faith always, especially in yourself!

I have found that a nice snuggle up to the spouse does several things…. And the pain goes away too!!!

Love conquers all!!

[QUOTE=homeagain]Honestly, I had a neuropathy set back…big time this summer that drastically altered my life for the last 7 months. I’m now daily regaining strength thru PT and exercises to be done at home and While I’m not blasting forward progress-wise at the speed of light? I’m not ‘regressing’ too much either.
I see the ortho next week, and will plead for more PT! My balance is beyond shot! So go and give your special other a giant HUG from me…and you too!
About feeling sorry for self? Well, you gotta sit yourself down and really look at the ‘options’! Wheelchair? Not thru some parts of my house…and I guess many others’. Scooter? Even worse-HOW do you get the thing down the step to the house [fire/safety code stuffs] and then into a vehicle to get and go somewhere? My! It’s way to complicated! I don’t know about any other of you? But I know I DO NOT want to go out quietly! Especially about Having people come up to me ‘speaking louder’ as if I can’t hear well either!
YE! I ask myself at down times: WHY ME? But then Why Not? And What makes ME so special? If I’m slower getting around, so be it. If I’m not as easy to stay up and have ‘fun’ with?[Tend to doze off mid-sentence?] Take me as I AM! I am NOT going to pretend things are fine, I’ll find ways to do things ‘other ways’. Such as shopping on-line, or doing grocery shopping the same way? I Will challenge doctors about some decisions and biases – armed only with facts and I will seek the best I can get out of all the medical resources available to me! Do NOT ever pity yourself! You got a bad throw of the ‘dice’ so to speak. We all have here. Tho, yes, you can feel down now and then? But PLEASE PUT UP A GOOD FIGHT! Thru this effort? You gain doc’s respect and then THEY in turn can start working really on your behalf. Thing is to put yourself in an informed position to make them WANT to work for you!
So yeah, you can feel overwhelmed, at times? But now? Get MAD And declare WAR on this CIDP!
My heart is with you thru this journey. I’d done it alone, not being web-wise at the time. But, I’d found out later that others have ‘done’ this route and are somewhat in sync with my feelings. Keep faith always, especially in yourself![/QUOTE]

Thanks for posting such an enlightened message. Helps to know we are not alone.

And compose yourself. Calm yourself down – I’m sure you’ve learned techniques for this? IF not – LEARN THEM! One of them is BREATHE!!!!!!!
It’s surprising how we tend to HOLD our breath when stressed or try too hard some things? Actually, those breaths help. Don’t deny yourself of that AIR.
Next, acknowledge that this stuff DOES cause stress. No doubt about it! When Docs ask me about this aspect? I honestly reply: What person in their right mind wouldn’t be stressed w/this stuff? End of conversation. [Besides, I don’t take well to SSRI’s AT ALL!]
Now, regrouped, set your priorities, and work like a demon to get them done. Sounds like you are on the rite track, and DO HAVE FAITH IN YOURSELF?
BTW? I’d thot my numb/deadness was permanent, but it keeps trying to come back! In spurts and spluts for lack of a better way to put it? Then a set-back or two? But I’m mostly always better off than at first!
Be what docs call: a live one; or a firecracker! Better that and feisty than some other ‘names’….NO? Keep faith in yourself and know what you need to do is RIGHT! Be your best advocate-no one else can do it as well as you!

I am sorry things are so hard right now, I guess we all go through these feelings at sometime or other. When dealing with a chronic illness, being in pain, and tired day in and day out I would guess these feelings are pretty normal. It really doesn’t help when friends and family don’t understand how you are feeling, and let’s face it- unless they going through it too it, is hard for them to understand. Enough to make you pull you hair out huh?

I guess we all cope in different ways too. Like everyone else here I have chronic pain and fatigue. I do what I feel like doing-if I don’t feel up to it I don’t. Those closest to me know the situation, and for the most part they understand. If they don’t understand—tough cookies baby!:D The other big thing is I laugh A LOT! My sense of humor and my ability to laugh at my own expense sometimes is what has really pulled me through this whole thing. I am not saying I never want to scream, but when I want to, I do it- I live in the country I walk outside and turn it loose!;)

Jojo,
Did the doc tell you the ablation will cease your cycle? I think it just slows the amount so that things are not as heavy. There is a new birth control pill out that keeps the period scheduled for only 4 times a year, maybe you could do both? Good luck!
Dawn

PS, have you started regular ivig yet?
Dawn Kevies mom

[QUOTE=jojo87]still having stomach issue. it really hurts. keeping me up at night. going to call doctor tomorrow. still no idea of when kidney stone will be taken care of. I am going to call that doctor tomorrow as well. Supposed to have an ablation done next friday. (way to stop my menstrual cycle) My mom wants me to postpone it because she is supposed to go to IKEA with some friends that day. WHAT???? I dont know what she is thinking. I am going to have it done anyway and see if my friend can stay with me or if i can be admitted to the hospital overnight.IKEA really? if i dont do it than who knows how long vwefore the doctor can schedule it. My cycle is such a problem to deal with right now seeing how my hands are numb besides i am 40 years old and not going to have children so why mess with it. I went without it for a long time when i had GBS the doctor just wanted to see if it would come back normally. It has so now i can stop it according to the doctor.[/QUOTE]

Had the ablation done twice, quite painfull, but well worth it in the end….I have a pituitary tumor that was causing all sorts of hormonal imbalance, so i did the ablation to help deal with those issues……wow, I wish I had done it sooner!!! SO glad I went through with it. Best of luck to you…sounds like your mother isn’t getting the big picture….? You have a huge support group here if you need it. Keep your chin up!

My mother had an ablation done & it did nothing to help her cycle. She ended up (years later) having a hysterectomy. There are ways to control your cycle with birth control pills. They will make it lighter or you can chose to not have one at all by not taking the sugar pills & continuing the birth control pill.

It seems your mother is not at all sensitive to your situation & I am very sorry about that. I hope your friend is able to drive you to your appointment.

Kelly

jojo

why are the doctors waiting for the kidney stone to be passed before they start your IVIG? are you seeing a neurologist or a regular doctor?

It just seems to me that a neuro would start your IVIG so you can get better and not worst. I am afraid they are just letting you get worst by not getting you the IVIG that you need. I can’t imagine that IVIG would effect your kidney so why does it matter for the kidney stone to be passed first?

I am praying for you and hoping you get the IVIG very very soon.