How do you get through a bad day?
AnonymousOctober 16, 2008 at 5:02 pm
There are times when I can’t get through bad days without breaking down. I miss my old self and wish for it back at times like that. I don’t get upset at the ones that don’t understand. They have never walked in my shoes the same as I have never walked in theirs or anyone elses. Most bad days I can get through, it may be a thought such as there is always someone in worse shape than me. Other times it could be a phone call, my husband, going outside or get busy doing something. We all have those bad days and with what we have gone through I think it is only natural that we have a day once in awhile we can’t make it through.
Better days ahead for you.
AnonymousOctober 16, 2008 at 6:08 pm
You’re post touched me, Christie. I posted one similar a few weeks ago, yes, on a bad day. I felt so low, so helpless, so hopeless. Coming here helped, in fact, it inspired me. Since then, I hospitalized when I progessed, dealing with the medical profession at a teaching school having my future in their hands. I realize how much they don’t know about the actual patients, just the “science” of the disease. I’ve been busying myself about awareness and how to propose a program as such to the medical schools. So keeping busy is important! It gives hope. As I read this, the news has just reported of a death from a soldier from the state. He died on his first day back to Afghanistan after being home on leave. He was 25, a brother, a son, and a husband. When I imagine what that family is going through, I think…………my son came home safely from Baghdad, then I feel very very lucky. I hope you can find comfort in family. I know you got dealed a sucky hand at a young age and my heart aches, but we can only hope for better treatments, and miracles, I guess. Be strong young woman!! We’ll always be here if you need us!
AnonymousOctober 16, 2008 at 6:36 pm
Christie, coming here is my salvation on those bad days. I had GBS 25 years ago and was relatively well for about 20 of them. Then the residuals hit with a vengance and some days I just want to curl up in a ball and lose myself. At those times, I come here and visit. I post lots and read even more. When I am going through a good period, I don’t post as often, but I still come to read.
I have met a couple of great gals here that I now consider friends and we are in touch quite often. It helps to know there are others who understand you. And some of the guys have been a blast. There are about 8 of us who are faithful to The Tavern. We go there and let our hair down and our imaginations run wild. Be sure to visit that thread!
I too, try to stay busy. If I am having a physically down day, I read, do Sudoku, knit prayer shawls for individuals who are terminally ill. It keeps me busy without having to be physical. On the good days, I get outside as much as possible. I also have kept my job and that helps me alot. I am scheduled to be on the road training every other week, so I be sure to rest for a day or so before I have to go.
I guess each of us copes in our own way, but I have to say coming here is what helps me stay sane. I wish you well. Hang in there. Come visit whenever you can. Find a couple people that you feel you can relate to and then pm each other. Get to know each other better so you can become each others support network. There is sure to be someone here that you share interests with! Go for it!
AnonymousOctober 16, 2008 at 8:16 pm
Hi Christy! That would vary on how bad my day is! Some days are bad and I manage to be able to cope. Coming in this site, talking with my mother, my children or even laying in bed watching a movie and just resting, even reading or doing a small craft. Anything to take my mind off my disease, I will try doing.
I used to care what people thought and now I deal with me!
I too see days of being lonely because I can’t get out and function. But I try to do the things above just to get my mind off having the bad day.
When I get a really nasty massive attack on my nervous system and am in my home by myself while my husband is working. That can be very scary and at times, I would lay on my sofa and cry and pray it would soon pass and be over with. Now that is a really bad day!
Worse thing! Family and friends don’t really understand what you are going through because they have not been there and have not felt what you have felt. My husband still don’t understand me when it comes to me being sick. He know’s I am sick but just don’t get the concept. He still see’s me as being normal at times. And then I think he get’s tired of dealing with me hearing it over and over again. At least I feel this way but he really does not show it, but I feel this way.
I have learned over the years, that they too worry about me, and what I see happening.. is that they place me being sick out of their heads so they can cope and see me as being normal. They let their life go on as usual! But it makes you feel like they don’t care! If we were healthy.. they would be the same way! What has changed is us! We have become sick and we know we are very sick but the healthy ones in the family don’t understand. My children have experienced a virus and the flu and they don’t see their mom being this sick because they have never experienced what you are going through.
My middle daughter was also diagnosed with Lupus 3 years ago! She used to treat me like dirt! Boy she gave me a time in her teen years! Here I was sick and having to deal with a mouthy teen that knew it all! Puberty years!
When she started getting sick, she started coming to me and apologizing to me and told me how bad she felt for treating me so badly back in her younger days. When she gets flares she calls me up and wants to know how I dealt with this nasty crap! Her Lupus has been mild form and we got her diagnosed early. When I started seeing symptoms in her, I got her to go see a doctor for it! They did a skin biopsy so we would have the 5th criteria. And since I had lupus the doctors decided to check her out and she was positive. She had a few positive ANA’s in her teen years too and I suspected lupus.
As much as I hate to say it! Only the sick understands the sick! That is why we are more supportive and understanding.
Hope you feel better Christie! Been there many times over but I think we all in here and felt the same way! Hugs
AnonymousOctober 16, 2008 at 8:23 pm
Hmmm how do I get thru a bad day? I try and stay busy, go to the YMCA and exercise, visit my mom and dad for lunch, sit at the computer and visit the forum and send/return emails, do some yard work until I’m real tired. But sometimes I give in an have a good old melt down, cry, sleep, sit or lie down and watch tv all day. It doesn’t happen too often but more than I want it to. I’m one of those that lets it build up and then that one little straw makes this gal lose it. It happened yesterday at my doc’s office. Oct 1st, my hub’s employer changed ins. companies again… and when I showed my card at the check in desk, she said they don’t participate in my plan. Now I did my homework back in Sept and checked to make sure my PCP was in the plan and he was covered in the plan’s “network” called Beech Street. This I told her and she said yes but not under my “umbrella” but she would work on it. So I start crying. This guy has been with me thru all of this so I’m gonna stay with him and be a self-pay. Doc thinks I’m depressed and that I need someone to talk to. Well he pushed that button and I start to cry real bad because my mom is my person to talk to and she’s dying of brain cancer and can’t carry on a conversation. I miss her terribly. So yesterday and today I’ve been very weepy. A kick in the butt and a new day tomorrow!
AnonymousOctober 16, 2008 at 8:54 pm
I am so sorry to hear about your mom. I can’t imagine what that would be like. I spent an hour and a half on the phone today with my mom and I always look forward to those chats. I would and will sure miss them when I can’t have them anymore. I truly cannot imagine….I will say a quick prayer for you and your mom….
AnonymousOctober 16, 2008 at 9:33 pm
Thank you all for your responses! I am busy, I work full time outside the home and have a 2 1/2 year old. I tend to bottle everything up and then one little thing will set me off. I really appreciate this forum and all the support and kind words that you all offer. Tomorrow will be a better day! Thanks again to everyone!
AnonymousOctober 17, 2008 at 12:47 am
Now, I go back to bed and stay there as long as I can. But remember, I am on disability, do not work, and my major function now is housework, cooking, and collecting my disability check.
But really, rest is essential.
Four or five years ago, all my kids were still at home, in school, I was working 60 hours a week, just learning how to deal with CIDP and getting frustrated as HE#@ about trying to deal with the situation. It gradually got worse and worse, losing my job, my healthcare, my families healthcare, all our savings, and the meds took away my libido. I finally got the SS disability and began some kind of life. It is so different from what it was before. My outlook is so different from what it was before.
I had so much anger about having CIDP, nobody to share with, nobody understanding, losing all that I had, not being able to do the things with my kids I wanted to. It was all so unfair. I was deeply depressed and overwhelmed. I took a four day seminar about dealing with depression. We talked about lots of stuff. In the beginning we did a self appraisal, things like 50 points if you lost your job, 50 points if you have had surgery, so many points for moving, you get the gist. It was like 200 point total and you are depressed, I scored like 800 something….
I have been there, in all the ways. Many of us here have been, and will be again.
One big thing that has helped is that I have recognized that I will always have CIDP and it will always impact my life. I must continually accept that. From there I try to figure out what I can do, and what I would like to do, and what I cannot do. Each and every day. I have lerarned to scale down my day to do what I can. The rest of the stuff, hey, someone else can do it or it can wait. I have CIDP and it affects my life.
I make sure I share my love every time I can. I try to help my wife and the kids as much as I can. With 2 in college and the last one a Senior in HS it is much easier. Even though sex has been out of my life for a while, we still share closeness, and I love my wife more and more. She is so special.
I can’t say that I don’t get mad anymore, or throw temper fits, or get upset at how bad CIDP has changed me and my life. I just don’t let it consume me anymore.
Hope this helps
AnonymousOctober 17, 2008 at 2:42 am
WOW there are so many things that can be done to destress. I have found that my Dog is my best way to destress. He is a chihuahua ok ok I know that they are supposed to be mean and yippers right? Not my little man he is so funny and cute and a social butterfly. he likes to be around everyone and loves attention from everyone. I could not ask for a better way to spend my time he will give you a hug and a kiss when you need it most. and wants to play and hang out even though I cant go to far or too fast.
My family say that we have some form of ESP between me and the dog because I can just look at him sometimes and He does what I want him to without any verbal commands. LOL that is my way of enjoying my time alone and the times that I cant stand things anymore there he is.
AnonymousOctober 17, 2008 at 8:46 pm
I have to say I am pretty busy, too. I work full time outside of the home and have a 6 yr old boy and husband. I also have an almost 12 yr old stepdaughter every wed and every other weekend. She is usually happiest if I’m not around.
I come home from work everyday and prepare for the next day…Connor’s lunch, money, any papers, lay out his and my clothes, make dinner,give him his bath, play or read -and a few times per week-watch a little tv.
You’d think I’m too busy for a bad day but they do happen. I keep alot of it in, hide even more of it. I come here to vent or read about someone else and that helps alot. I find that crying in the shower is my safe net b/c nobody sees me and nobody knows. My son always “tells” on me and I dont want him to worry about me anyway. So, if I can help it, I cry most of my tears in the shower or bathroom.
I used to call my mom, too. She’d always get my spirits lifted again. I could call her and just start crying and she’d tell me, “honey, tomorrow is another day” or “tomorrow is a better day”….so, now, without her to call, I try to remember the words she’d always say. And I know, she is still here to listen. I grab my chest as if to hug myself b/c we hold her in our hearts now…and when I do that, I’m giving her a hug. Maybe that’s corny…but, it’s one of my “things”.
I like to go tanning…tho I dont get to as much as I’d like. That’s something that always makes me feel better. I also will try to snuggle up with hubby….not much time for that any more either. I wish sometimes I could just go lay next to him and have him hold me till I fall asleep. I go to bed much earlier than he does and usually Connor lays with me till he falls asleep anyway.
I miss the snuggle time with hubby and I dont know how to get that back. I can ask him but then he says he will or wants to…and it never happens. Its my fault for not putting Connor in his own bed at bedtime.
So, there you have it…find something you like to do or someone that you can just lay with. Call a friend or vent here…or another thing I do, is clean house. The busier I am, the less time I have to feel bad. On days where keeping busy just wont work, let it out. Sometimes a good cry can do wonders.
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