Mood Swings

Kinney,

I know how frustrating this illness can be. I can’t say that I have had mood swings but I have had bouts of depression. There were days I couldn’t play with my kids or do things with my husband and days I was discouraged but I hung in there. I am begging you to do the same.

What makes you a good husband and father is not how much you run with the kids or make love to your wife, but how much you love your wife and kids. It is in the way you talk to them, touch or hug them, say the words of love. It is your being there and rooting them on from the side lines. They may not appear to understand why you can’t do the things you used to but in their hearts, they know.

Please, please, get help from a cousellor or your family physician. Depression is a chemical imbalance and it is not just about “pulling up your socks” as my mom used to say. It requires specific meds to deal with the imbalance. It may take a while to find the right meds and dosage for you but you have to hang in there and keep on plugging. Please, get help. It may also help if you could go as a family so that you could all talk about how this affects the whole family. I think we forget sometimes that this illness not only affects us but also those that we love the most…our families.

I will pray that you find some peace and comfort.

Kinney,
You almost made me cry with your post because I have struggled with those same emotions myself. I don’t know whether GBS/CIDP directly effects your emotional and cognitive status as in demyelination of your brain, however, I think it’s become pretty clear to me, to everyone around me, and to those unfortunate to meet me on a bad day – that my emotions and cognitive abilities wax and wane with my symptoms. If I am having a good day, little pain, little tripping etc. then I am able to deal with what is going on with me and keep a good attitude. But when I am feeling pretty cruddy I can’t help getting depressed – I’m too tired to muster happy thoughts, I can only think of the burden I’ve become, how I’m not the same person I used to be, I can’t do the things I used to be able to do, and my memory resembles Lorraine Swiss Cheese. And yes, my emotions can change at the drop of a hat – happy one minute, frustrated and pissy the next – however, I’ve had the advantage of going through that once a month since I was 14 so I’m used to the emotional rollercoaster. 😮

Don’t worry too much about the memory problems… after 26 months mine is FINALLY starting to get better. Before people started talking about it on the forum though I was pretty worried – couldn’t remember conversations with people I’d had an hour before, couldn’t remember phone numbers, addresses, faces, names – so many things I was starting to get into a panic. My husband and I were both very concerned that I might have been left permanently impaired (emotionally and cognitively) but it is FINALLY starting to come back. Slowly. I completely understand how frustrating it is to have a faulty memory – there were times when I would just cry because it seemed like my life wasn’t really worth much when I couldn’t do anything and couldn’t remember what I could do, or did. I tried all kinds of things to help with this – little notes, voice recorders, my husband calling to remind me to eat etc. but nothing really helped until my health improved as well. It has taken much longer than I think it should have but I am FINALLY starting to think more clearly and remember more things. I even reminded my husband of something he forgot this weekend. It’s tough, I had to work at it by writing lists and memorizing them, by putting myself in charge of things like making appointments, grocery lists, etc. to force myself to use my memory etc. I worked at it all the time – I’d read a paragraph, close my eyes and try to remember what I read. I have no idea whether actively trying to get my memory back really helped or not but it helped me emotionally to feel that I was doing something to help my situation. It really helped me a great deal to confess these memory problems to my husband and close family members – it was embarrassing but it was also a great relief to be able to say “oops – I don’t remember what we talked about last week, were we going to do…” and you would be surprised at how accepting they were. My husband already knew of course, but the rest of them were relieved that I had a bad memory and not that I didn’t care about them.

As for doing things with your kids, I don’t have kids but I love my nieces and nephews and it does depress me that I can’t run around and do things with them that I used to be able to do. I hate sitting on the sidelines while they are out playing soccer… so I had to look for other ways to interact with them, ways that didn’t require too much energy or strength. So while they are running around like nuts throwing marshmallows at each other I’m on the sidelines capturing all on digital film, and when they come in tired, dirty and sticky I’m ready with warm washclothes and a comfortable lap to sit in.

Yeah, I understand the sex thing too – I feel horribly guilty that my body won’t cooperate with my mind – and/or that I’m too sick/tired to even think about sex. I’m gonna go out on a limb and suggest you get creative here, there are important parts to intimacy here that have little to do with the “ups and downs” of your sex life. 😉

I understand that violent rejection of your life as it is – the moments of wanting to kill yourself and end what you’ve become – it’s so hard to get perspective when you are depressed but it’s not really my LIFE I want to end, it’s my LIFESTYLE – the way I am living right now. I love LIVING and I love the people in my life but the way I’m living right now can be unbearable at times. Once I understood that the ball came back into my court again, what don’t I like about my life right now and what can I do about it. Granted I can’t wish myself into winning the lottery and solving our money problems but I can take other steps in that direction to reduce our cash outflow (like ironing my husband’s shirts which I find strangely relaxing???) The most difficult thing about depression is that it’s so very difficult to get perspective when you are depressed. I liken it to being face down at the bottom of a well, it’s dark and all you can see is the muddy bottom and darkness. Sometimes you need help from family, friends and professionals to be able to turn over and see that there is a light at the top of the well that you can reach if you climb up one step at a time. I encourage you to find someone to talk to, to help you flip over and see there is light for you to reach for and to give you a boost when you slip a little on your climb out of the well of depression. This forum can be a wonderful place for support, most especially because many of us have been through these emotions and struggles, however if you find yourself seriously considering suicide and it’s not just one of those “I can’t take this anymore” frustration-type moments then you should most definately seek out professional help. As Jan says, depression is a chemical imbalance and there are many medications out there to help balance things out. You said you have been on a lot of different drugs for depression… are they all the same type? as in are they all MAO inhibitors or SSRIs? because maybe you need a different type of drug. Also, these drugs take a long time to kick in, like weeks to a month. So if you are switching drugs around monthly because it’s “not working” or due to side effects then you might not be giving them enough time to settle down in your body.

Hang in there Kinney, I know it’s tough but come post on the forum when you feel like you are drowning – we’ll all toss you a lifejacket and pull you back to the Neuropathy cruiseship where the music is good, my singing is bad, and virtual margaritas are free. 😀

Julie

P.S. Wow, sorry this was so long ya’ll. too much coffee 😉

Julie,

Well said! You made some great comments and Kinney, please, listen to Julie. It does get better. It takes time and when you are depressed time seems to slow down but as Julie said there is a light. Reach out to it!

Hi Kinney,
Kevin has issues with his memory and bouts of depression. I wonder if mood swings and depression are one in the same. I have observed that Kevin’s memory issues seem to be heightened when he is depressed or in pain. When he has pain, he is also tired, I think they all contribute to each other. I guess I am starting to think that the cidp/gbs itself is not causing the memory, mood, depression, but its side affects induce these symptoms. Kevin and I are working on calming techniques if you will. When I see an episode coming on I sit down next to him and try to teach him to take deep breaths and get the feeling to pass. A bunch of crap? Who knows, sometimes it works, sometimes he is so far down he just gets mad. He often says he does not want to live anymore, especially a day after intense play and pain follows. Currently we are on several up days, but as treatments approach next week, the mood will change.

Some medications for depression are dangerous to take with the feelings you are having. Have you discussed this with your doc? Woould it be possible to get off of them for a while and see where you are (with the docs approval of course) My heart goes out to you, although I am not ill, I feel despondent as well, sometimes it is so hard thinking about what the future holds for Kevin. I can only imagine the pain you must be in. I am thinking of you and hoping peace will come your way.
Best wishes,
Dawn Kevies mom

kinney, i’ve been dealing with the issues you have listed for seven months now.
Been told that the prednisone i’m on can contribute to the mood swings. am also on an anti-depressant.
it is hell, each minute of some days are different. keep telling my husband to get rid of me. he does almost everything for me. i feel guilty that all of his dreams have went down the tube due to this illness. we are older and he had plans of taking a trip to canada this year. there is no way i can go.
i had the best 15 days after my last phresis than i have had since being dx in nov 2007. actually got to a store in my power chair with dave’s help and in the community pool.
this week i’m starting to relapse and will call md tomorrow or wed to see about more phresis.
hang in there, keep the faith, and julie was right on.
saying a prayer for you.

a good deal about how each of us feels and identifies with what you are going through.
Think back [altho a bit unpleasant] about all you have experienced coming down with the GBS and all it has done to you! You have had major insults to your body in many ways. Of course it’s going to affect you mentally, emotionally as well as physically. Then there is the overall stress of just getting ‘by’ day to day. On top of that many of the medications used for helping our pain can make us moody, forgetful and crabby on top of the pain itself.
Right now, you are NOT your OLD SELF. Possibly you might never be. But, with lots of patience and stubborness you can get back a lot you never thought you could. But it is up to you how you approach it all and deal with it all.
Sounds silly on the face of it, but a positive attitude really works for YOU! By that I mean, that your doctors might just work harder to help you. Your family and friends will want to be around and nearer to you as your are now. It’s kind of a humbling experience this stuff. But, you have to find and take the best of what is within you and use it to the limits.
Medications such as Neurontin and Prednisones can affect moods – web up and read the ‘prescribing information’ of those you are on. If you are on multiple meds some negative aspects of one can be ‘enhanced’ by another. Speak up to your docs about the memory and mood issues and the particular meds. Maybe a med change can help.
In my own case, neurotin was my mind dissolver. A change to another med really made a difference and I was able to complete whole complex sentences without forgetting what I was saying half way through. Yes! You are and should be frustrated! That is what all the good people here are for. We’ve been there.
Julile, and everyone has given you wise advice. Use it well.

Hello Kinney,
First off, I just want to say “welcome to your new family where we feel what you feel”. And yes, we can have mood swings, anger and depression, because after all, our whole world has turned up-side down and we must learn to live as a different person. Just remember that those who have GBS gave it a new name, Get Better SLOWLYYYYYYYYYYYYY.