Mourning Myself

[I]Florencia, please seek out a psychologist/psychiatrist immediately. You’re letting the disease control your life, including your family’s lives, rather than you doing what you must to control the disease’s effect on your life.

Please.

Rocky[/I]

everything you are feeling is normal. How long has it been since you were diagnosed with CIDP? Ryan has his moments too. When he was first diagnosed there was a lot of tears shed by all of us including Ryan. He had to take a semester off school aND then this past fall he had to make the dicision to not go back to school this year. Hehad to take online classes. For him that was like the end of the world for you its not being able to care for the house and family like you were able too. All normal.
what treatment are you getting right now? I also agree with Rocky you might want to see a counselor not because your crazy but because you have to come to terms with this illness and sometimes it helps to talk to someone. When you have a chronic illness it can be overwhelming and cause you to get depressed. If you didn’t get a little depressed or upset I would worry.
I totally get it cuz Ryan has gone through it and I have too. Its hard for me to see my 21 year old son suffer. I see what he goes through and wonder if I would be able to endure what he has. I don’t know if I could, at least not as well as he has.
Hang in there I hope it gets easier for you or at least more tolerable. I hope your able to start spending some time with the kids. lay on the couch so you can spend time with them while they play or watch tv. Take Baby steps and try not to be too hard on yourself, and I tell Ryan this all the time “take one day at a time” it gets to overwhelming when your looking at the big picture or future. so only look at today and what you can do today. do the best you can for today and tomorrow will come. Rest when you can and use your energy when you need too.
I will be praying for you and keep us posted on how your feeling.
Rhonda (Ryan’s mom)

Florencia,

I’m with Rocky & Rhonda encouraging counseling and praying for you. This disease and what it does to us physically and emotionally is a heaven burden to carry. And it’s a heavy burden for our caregivers too. I can’t even begin to imagine how hard dealing with CIDP would be for a young family such as yours.

CIDP has changed my life and changed me, but it’s not controlling me. I’m still Gary, Gary with CIDP, the numbness, pain, fatigue, treatments, … we all know the list. But I’m still Gary. I’m still loved by and still love the same people as before CIDP and I have some wonderful new friends here on the Forum. You’re still Florencia, you still love and are loved by your family. Counseling to help you get control back is not a bad thing.

When I was going through some of my worst times this last summer I read a Psalm each day from the Bible. The Psalms reminds us of who we are and tells us a great deal about the nature of God. Knowing that we are loved by the Almighty because it’s His nature to love His children. It was so encouraging to me to read about God’s character and be reminded of who He is and that who He is doesn’t change regardless of what I’m going through.

If you have a pastor talk with your pastor. If you have a trusted Christian friend, talk with that friend, we’re supposed to carry each other’s burdens (Galatians 6:10). But that also tells us that we’re supposed to share our burdens with each other.

Thanks for opening up to us here on the Forum. We know what you’re going through. Be encouraged and know we’re praying for you. Please keep us posted on how you’re doing.

Gary

I have to say I think what you are experiencing is natural. Emily went through it too at only 4 years old. I remember she was VERY angry & took it out on me often. Then one day she said to me “I just want to be me again. I want my old life back”. And it broke my heart into a million pieces.

I Googled “stages of grief” and got this link:

[url]http://www.allaboutlifechallenges.org/stages-of-grief-faq.htm[/url]

There are 7 stages of grief & I believe anyone with CIDP has gone through them & I also believe anyone caring for a person with CIDP has gone through them too.

These are the stages in order:

Shock and Panic: We question, “Is this really happening?”

Denial: “No, this is not happening to me! There must be some mistake!”

Anger: “Why me?” Sometimes our questions are aimed at God, doctors, caregivers, family, self, or the one who died.

Bargaining: We promise, “God, I promise, if you will just. . .for me, I swear I will. . .”

Guilt: We tell ourselves, “If only I had. . .” or “I should have. . .”

Depression: Loneliness, self-pity, and isolation are emotional drainers that can cause depression.

Acceptance: Finally, we accept: “I can’t deny it any longer; it really did happen to me.”

Hope and Healing: “I’ll survive. It was really tough, but I’m going to make it.”

Refocus: We focus on becoming better, not bitter.

I personally believe you can be in more than 1 stage at the same time.

I can tell you, I went through all of these stages & pretty quickly, but I have fantastic coping skills. I did have trouble with accepting that Emily was sick. I spent about a month straight repeating to myself “I am the mother of a sick kid” over & over again and after a month it wasn’t so scary anymore. I accepted it & moved onto Hope & Healing.

I think it might do some good for you & your husband to both talk to someone. Not because there is anything wrong with you but because going through this is difficult. It’s hard on everyone & if you can communicate with each other through this I can guarantee your marriage will end up so much stronger. When Emily was first diagnosed my mother said to me “This will either break your marriage or it will make it. If you can get through this together you will be so much stronger”. And that is the truth.

And if I can offer some advice from one mom to another, don’t stress out on if the house isn’t clean or if the kids eat donuts for breakfast every day for a week or the only get a bath every 3-4 days. It will be ok. I know you want to have the laundry done & dishes clean & healthy food for your kids. I’m a mom, I totally get it because I want that too. But, at the end of the day, it will be ok if those things don’t happen all the time. If your husband wants to order pizza one night for dinner & the next day the kids eat it cold for breakfast and/or lunch, it will be ok. I promise. Your kids will not think you are a bad mom. Your husband won’t think you are a bad wife. Right now, things are crazy in your life and you need to take any extra time and energy to heal YOU.

I know it’s SUPER difficult for any mom to put themselves first but right now, you HAVE to. And you are not doing it for you. You are doing it for your girls. You want to get better for them. You want to be able to read to them & cuddle with them. When you are laying in bed & feeling upset because you can’t take care of them, remember that you are laying in that bed trying to get better for them, so you can be there for them.

HUGS,
Kelly

As others have said, your grief is normal, but please don’t take that as anyone is saying, “just get over it”.

I had to go through grief counseling several years ago when my mother passed away; seems I’d never “learned how to grieve”, and was still dealing with issues as far back as my father dying when I was 16.

I guess my point is this: accept that the grief is real, get professional help, and get control over your life again. You CANNOT ignore issues like this; they WILL NOT be ignored. I like to tell people, “Emotional issues are like spoiled children…they WILL NOT go away, and YOU WILL have to deal with them sooner or later”. It is my experience that sooner is much better than later.

A book that I read, I think it was “The Road Less Travelled”, stated that something like 90% of psychological illness is the direct result of not dealing with issues as they arise, and trying to ignore or bury them. When you do that, they fester like an infection, until you have a much greater issue to deal with.

Please seek out qualified, compassionate care. If you’re not experienced with mental health professionals, another consideration is this: If you see someone, and you’re not comfortable, don’t be bashful…tell them straight out that you want a referral to someone else. If they’re competent, they will understand and eagerly refer you to others. It WILL NOT hurt their feelings to tell them that you don’t think your relationship is “a good fit”.

You have my prayers and thoughts.

Elmo

Florencia,

I just read your thread and I cried through most of it. It brought back so many memories for me. When I was just in my late 20’s I was diagnosed
with cancer, I had just given birth to my youngest son. He was only 6 mths old and my other two boys were 4 and 5. I had major surgery and almost bled
to deaths in the hospital. After serveral pints of blood I developed an infection that almost did me in. When I got home I can still remember feeling
all the things you talked about. Please know we are here for you. Please,
please talk with you hubby about how you feel and I too think it would be
a good idea to seek out a counselor, phsy…pastor…someone who can help you get through this (with your hubby), he’s going to need help too. Kelly
responed in her post with such words of wisdom, she said just the right things
and they are sooo true. The 7 stages are there, they have hit me many times throughout my life, each time I thought I could handle something (I must be a slow learner) POW there they were! Please take care and keep
us posted. You don’t have to handle anything alone. Oh yea, one more thing. I’m 62 now, my 3 sons have grown into fine young men, I’ve been cancer free since my surgery and believe me, I can’t remember what they ate, or how they even survied that ordeal but everyone did and we did become a stronger family, and I became a stronger women too. P.S. I’m printing Kelly’s response so I can hang it on my bathroom mirror.

Ms. Judy
CIDP / ANTI-MAG

be a slow learner)

Hi Florencia,
Right now your are sick and feeling helpless, but you are undergoing a healing process. You need Rest Rest and more Rest. You are making all the right moves and taking all the right treatments. These challenges will take time to bring back health and recovery may resemble a rollercoaster ride.
Someday your family will realize with admiration all the effort you are making to get well and all the concern you have for their well-being. You are setting a good example for your loved ones even when you ask for help, support and counseling. Don’t give up hope.

Hi Florencia,
I would say that you are somewhere around the acceptance stage. That is great, you are not in denial and you already realize things are different, unfortunately. You have enough to deal with for your own medical issues, having your husband upset you seems unbelieveable. But you have to remember, he too has to go through the steps and might not be in the same stage as you. As well, he to has experienced loss, his wife as he knew her will have to make adjustments, the mother of his children is going to need more help raising BOTH of your children. It seems like you were their primary caretaker, he know has to take on a whole other role, full time daddy, caregiver, and maintain his job. So..try to be patient with him and express your feelings sooner than later. The only reason it is easier for me to be a caretaker is because it is my child, I like Rhonda have an ache. It is a different kind of ache and level of understanding than lets say a spouse. I would also suggest that you print out particular posts for your husband to read to see that others are struggling like you. As well, many cartakers come on the site to ask for help, info and advice, maybe you could convince him to sign up or at least read your posts.
Good luck, keep the faith!
Dawn Kevies mom

As we should. But we have gotten the short straw and now have to deal with it!
I speak as one who has CIDP, Cancer and three other confirmed immune disorders. When I see a new doc? I watch their ‘eyebrows’ go up and down! I take it all in w/a sense of humor? Why not? Let’s play really STUMP THE DOCS! And it happens, then YOU have to educate them about this stuff outside of their ‘realm’ and how ‘maybe’ it’s really related to their ‘realm’. I never go anywhere without my cane! I don’t actually use it? But in my imagination…at times..it sort of makes me smile to [I]think[I][/I][/I] that I could use it to get a point across.
You can think of it from a number of different ways: Yes you are mourning YOU – the YOU that’s always been known and does just what it should and more; But the YOU now? Is a bit different. The YOU inside of you is still a good person with a good heart and soul working do get by as most of us do. Now you simply have to use other approaches. I have always seen that there are two choices here…first to ‘give in’ and surrender? The second is to fight it for all you are worth and get as back into LIFE as you can! Yes, life will be a bit different? But That’s what LIFE is about! Changing, adapting and becoming hopefully better.
The whole process HURTS! It affects family friends and others…no doubt about it! But The more YOU know about what’s happening to YOU? The better you can state how YOU are affected/changed and are dealing with it all. Both to family, friends and especially other med professionals who’ve not encountered ‘us’!
You have good folks here to help you adapt and get thru it all. Don’t be afraid to ask questions. I believe at least a few of us have been at any ‘roadblock’ you are experiencing before. Hope and logs of good thoughts! ALWAYS!

Florencia,

I agree with those who encouraged counseling. However, I would encourage you to make sure that the “counselor” agrees to do some extended research on CIDP and its effects before talking to you and your husband. It would appear that both of you would benefit. Talking things over with someone who doesn’t understand what you are going through may lead to more harm than good. We “look” so healthy but we feel like something the cat dragged in and the kitten refused to eat. A lot a people even “professional” people misread the tea leaves because of that. There are day I would like to punch that face in the mirror [if I had the energy] because it looks so “vigorous” and I feel like just got hit by a mack truck.

[QUOTE=guskno]I was posting a reply to a thread I started a few days ago when the last words I wrote struck me to tears……. I think I have finally realized what hurts most from this disease…. It’s the loss of me…… I am watching and feeling a part of me die. It is a part I don’t want to let go of, but the struggle to keep her alive is too hard sometimes and this weekend, I lost.

——————————————————————————–
I am in tears reading all of your words and prayers. I am so humbled by everthing going on around me, in my body and life………. My little girls are 4 years old and 21 months old. I was speaking on the phone with my sister today about an altercation I had with my husband earlier today. Since I was in the hospital all last week, I had cooked enough food for the girls to take to school and also dinner for them and my husband. I am really big on eating healthy/organic w/o toxins and knew that if I didn’t prepare food, my husband would have ordered pizza and Chinese the whole time I was gone. And who knows what the girls would have had in their lunchboxes!
So I get out of the hospital Friday night sick as a dog. Sat, Sun and Monday, I was in bed with backaches and migraines from the treatment. I finally get out of bed today at Noon and prepare my coffee, only when I open the fridge, I found there was no milk, eggs, and I could go on…. I called my husband raving mad about how it is possible to have 2 little girls here in this house and we don’t have milk? I asked if he was waiting for me to get my butt out of bed so I could go back to taking care of the household like before? I said “Don’t you get it?! I am out of the hospital, but not out of the woods yet”!!! At the top of my lungs! It’s amazing how not having milk can make it feel like your world is crashing down on you.
The real reason for theis outbursdt was that I remembered the day before when I was laying with my migraine in bed and my 21 month old came to my door, trying to open it saying “Mommy,,,, Mommy”. When my husband said “No baby, Mommy isn’t feeling well and carried her away from my room, my heart broke. She was screaming for me!!!! All she wanted to do was feel me, her mommy next to her skin and I couldn’t even do that……… All that seperated us was a mere 10 feet, but I was untouchable to her……. I couldn’t even open my mouth to say “It’s ok”. What kind of parent am I???? I always put my kids first, but this time, I couldn’t even open my mouth to speak to her, for her………………… God I feel awful….. Useless……. Guilty……. Neglagent….. I just want to go back to the days when my kids were able to enjoy me…… I was able to enjoy them too with pain and set backs, but I would give anything to have that back again. Let them enjoy me, see me for me, my youth, my happiness, the free spirit who loves to fly kites barefoot and roll around in the dirt with them. That mom is gone, this mom doesn’t leave the house…………………………….. I’m so sad…. I feel I am mourning myself.[/QUOTE]

Florencia…. I feel for you, as I to have had the same thoughts, emotions, about mourning the loss of self. I have struggled with guilt for years, but now with CIDP it seems to be ever present, especially in the parenting realm. It is soooo difficult to want to be more to your children, but you are unable. This sadness is real, and normal…….it is all a process of acceptance, one I am afraid is important in order to find healing. I wept when I read your post, not only due to the fact that I can totally relate to your situation, but also becasue I feel so blessed to have this outlet, to know there are others who understand, relate, and care. I am so proud to be a part of something so meaningful and real, where one can say what you just have and feel you are safe to do so. May you find healing, self acceptance and may your family come to love and undertand the new you, and your limitations. All my best ….Julitta (CIDP, pituitary tumor, Fibromyalgia, mother of one teen daughter and self proclaimed artist)

[QUOTE=guskno]I really can’t thank you all enough. It seems like I am a bit ashamed of my feelings and that this forum is the only place I can really let my gaurd down and tell people how I feel. I always come to this website at night when everyone is asleep because I usually end up crying (like right now). I don’t know why I perceive this disease as a weakness or flaw in me? I can’t talk to my husband about it because no matter how many times he says he is sorry or strokes my arm as I cry, I feel like I am showing weakness. I have always been the alpha in our relationship. I made the big decisions, kept the home afloat and been able to tackle all problems that came to us swiftly and with very good outcomes. Now I can’t even decide what to make for dinner. I am overwhelmed, but so is he. He has a very demanding job as the CFO of one of the country’s largest police departments and then comes home to a wife who is falling apart and small children who need caring for. In my hey days, I was sick, but strong enough to work which gave me a sense of identity. I was proud of my career and how hard I worked to make it what it was, but the stress of the job made a managable work/life balance immpossible. I stopped working the day my arms became paralyzed for a few hours. I think, no, I know my body was telling me to slow down for months and I ignored it. So it took away the use of my hands to make it’s point and I stopped working. I feel like I gave what I could up because I was not going to give my family up, but I keep getting worse. I have seen a counselor about this and recently started with a psychiatrist who provides talk therapy, not just medication management. I have only seen him once because my 2nd appt was scheduled for when I was undergoing IVIG. I am making a note RIGHT NOW in my calalnder to call and reschedule. No more excuses. I need to move on. I need to stop being the victim in this scenario, or remember that I am not the only victim. I will also talk to my husband about going to therapy with me. I know he is at the point where he says he will do whatever it takes to help me heal emotionally. I just don’t think he realizes that he needs to heal also. He is married to a sick woman who is going to have ups and downs. With a little more understanding, not support, because he supports me in ways that I am too blessed to count, but to understand how this disease has effected and changed my psychologically. I really can’t thank you all enough. You have allowed me to express myself in ways I have never expressed myself in the past to anybody, not even my counselor! I feel like I have to be strong all the time and can’t have break downs. I need to let go of that because the breakdowns are what are helping me heal. And it is thanks to this forum and support group that I have started my journey to healing and accepting myself. I love you all and have you to thank for my sanity. I will let you know how the psychiartist goes. On my first visit when he asked why I was there, I answered “because my moods swings are so scary that I feel I have lost control of my emotions”. I am now going to tell him that it is “because I have to come to terms with my disease and realize that there are changes that are happening to my body and emotions that I cannot control. I need help in taking control of my life again instead of having this disease control my life”. I will figure out what to say but you get the idea. I have sought help for the problems that can be cured with a band-aide instead of asking for help to heal the actual wound. Thank you all again.[/QUOTE]

So nice to see that you are feeling a little more grounded/positive. You are NOT alone, we all have bad days. I too am so grateful for this forum, I can’t even begin to imagine what it was like for those suffering with CIDP, prior to the internet. Wishing you all my best, speedy insight, and physical, mentsl, and emotional healing.

A couple of thoughts…

Can you afford some sort of domestic help? A nanny, someone to help cook and clean, etc.?

Your husband is probably frustrated because this is something he can’t “fix”. Men are “fixers”.

You made a statement in your last post that really bothered me…about expressing things here that you can’t tell your counselor. You have to overcome this; if you aren’t completely open and honest with your counselor then their help will be limited. They’re not going to judge you or gossip about you…you HAVE to tell them everything. Vocalizing it for others helps you work it out, too. That’s why patients do most of the talking in counseling sessions.

You’re on the right path…give yourself a break, and tell others what you need to get better.

Elmo

I understand your ‘dizziness’ from diagnosis to treatment? Went thru it w/the seemingly MONTHS of tests and then a diagnosis and treatment to a followup of the same w/ cancer!
Kind of like what Elmer Fudd said about being on a ship in a storm: “And the swhip wocked and wocked and wocked’…. Find yourself on level ground one minute and sort of hovering over deep water the next! I try to rise above it all by learning as much as I can about what I have! Not easy, but it helps you understand the new wrinkles that can and do happen w/o panic, Panic isn’t conducive to our med issues…Nope, not at all!
You cannot DENY this stuff! It’s persistent, tenacious and makes your life miserable….UNLESS you choose to not LET IT!
You are getting to the understanding point! But getting others to ‘get it’? IS HARDer than you can imagine!
To others? Simply be short and sweet, state that you feel weak and you dont want to “fall down on them” literally if you go out with them? But would LOVE A Doggie BAG? Most folks don’t have a CLUE nor can relate any of our issues, it’s not easy to explain.
I honestly have to tell you? I found out which friends & Family I could count on to help and those who not to count on during this all. When you give and don’t get any understanding back? Time to consider whether they are close friends or merely acquaintences. Some lessons are harsh as is reality, others can be and ARE inspiring!
BUT GOOD THINGS ALL? EVEN THO YOU ARE DIZZY! YOu got the dianosis and you got the treatments! With treatments-things will be ‘different good, and different not so’. But – Different is maybe an improvement?
Promise me tho? That you won’t gnaw off an extremety due to the pain, please?
Hope always !
PS It feels SOO Good not to keep hitting your head against concreate walls! Doesnt it?

WAY TO GO FLORENCIA. 😀 Keep moving forward with our support and love. Gary

Our family’s motto, which may help you, is WE have CIDP – CIDP does NOT have us!

Kelly

Florencia,

We all are battling a hard disease. It works on all of us in different ways, but it works hard on all of us. You talked about your “Mommy” issues. Mine are “Daddy” issues. My worst part was a few years ago, my kids were still in school, 6th, 8th, and 10th grades. I had no job and no way to support the wife and kids. Didn’t know if I might lose everything I had saved and worked all my life for. I realized I would never be able to go hiking or camping with them again, never play ball again, and never get to introduce them to so many things yet to come.

I am not in your shoes, but I have walked in a pair like them, and yes it hurts so terribly. I felt like so much less than a man. (and yes, I lost that part as well.) The disease, the medication, the way people look at you, the way you feel. It all hurts so bad.

Is there a solution? I don’t know. I try to find comfort where I can. When I have a window of opportunity with my kids, I take it and enjoy it. I look for pleasure where I can. Yes, there are things I will never do again, but there are other things I can still do. So I do what I can and try to enjoy that.

Every day is a new one with new opportunities. I’m sure you are a great Mommy. Your kids will understand much more than you will ever know. They will feed off of you. If you live with regret, they will think they missed something. If you enjoy what you have, they will love you and spend happy times with you.

My kids have blown me away with how good they are about accepting their Daddy just like he is. They bring me things I need when I feel bad, they drive me places because now I can’t drive. One time I fussed about being a pain in the butt needing driven around all the time, and my daughter made me cry when she said, “Daddy, you drove us around all those years, we can drive you for a while.”

You can only do what you are able to do. If you do it with a smile, that is enough. I’ll be thinking of you. Take care.

Dick S