AnonymousOctober 26, 2006 at 5:10 pm
Yes I know how you feel and have down days also. I am now past 6 months and do not seem to be improving at all. Still very weak legs and I loved hiking in these beautiful mountains in North Ga. It has been the most color I have ever seen and I am thankful I live right in the middle of it. I think the depression caused by remembering what you can no longer do is the toughest part of going through this. When I get really down, I visit a friend who is in the nursing home with a broken arm and a broken foot. She is in her 80’s and probably will never come out, but she is determined. When I limp down the hall, I realize how blessed I am to be able to do that.
Yesterday, I missed taking my neurotin and was hurting really bad at nightfall. I have done that a couple of times and its dumb. It doesn’t seem to do any good until you miss the dose.
I don’t know if this picks you up or not but if you will e-mail me at [email]firstname.lastname@example.org[/email] I will forward an e-mail I got from a friend today that really picked me up. I think it will help. Hang in there. osborn.
AnonymousOctober 26, 2006 at 5:27 pm
Ah yes, the dreaded blues 🙁 They do come but don’t forget that they also go again, if only for a moment. It is called grieving ~ a necessary part of moving forward. You lost the life that was familiar to you and now you must embrace ‘the new’. And that’s not easy! ~ especially some days more than others. So, thanks for sharing with us the ‘tough’ of today and know that somebody really does care ~ your GBS family 🙂 hugs
AnonymousOctober 26, 2006 at 7:16 pm
Personally, I think that sometimes when you feel bad, you need to do just that – feel bad. Like grieving, you try and try to feel alright but sooner or later it is going to hurt and you are going to have to let it.
Like a tunnel, the hurt that is not gone through, awaits you.
When somethng that is shocking to us happens, we often cannot deal with it immediately, our bodies kind of shut off some feelings – because it cannot cope with them. It’s a safety valve. I found this, not because of GBS, although I had it, but because of something else. I could not let go, I was terrified to do so.
There came a time when I thought “if only I could” but I couldn’t. And then came a time when I figured it was let go or continue down an unknown and frightening path.
Eventually I decided that if I let go, or let loose, it might have terrible consequences but so be it because where I was was leading to terrible consequences. So when the time was right – I let go.
And now, I am here. It has taken a while, everything is not hunky dory, but it is sooo different to where it used to be.
When you are ready you will grieve if that is what you need to do.
The only thing I would say is that – if you ever think you are hitting depression, (and it can sneak up on you), make the huge effort that it takes, when depressed, to get help. I got treated for depression, even though I rather suspected it was nonsense. But it wasn’t.
What I am getting at is, sometimes you cannot keep from feeling bad. And if you need to feel that way that so be it. Sometimes you have to go through it to come out of it. But make sure you have – someone to recognise when it goes beyond going through it, in case you hit depression. Not only that, we all need help at times, even when it is someone somewhere to let you sit on the floor and cry and be there when you need a hand to get up afterwards. Please keep it mind, that if and when you go down, there is an up waiting. I do not know if I have put this clearly, it was my young daughter who explained to me what she saw happen to me and she said that eventually I went up – beyond where I used to be.
And that is the hope I offer you.
AnonymousOctober 26, 2006 at 7:53 pm
Tammie- Thank you for your courage in this post. I have had a pretty bad week and havn’t had the gut’s to ask for support from our freinds here.
I found just the pick-me-up I needed in reading the responces to your post. I have to keep reminding myself that I am no longer superman. That I have a family that loves me and needs me, not for the phyisical things I do (or did), but for still being a supportive father,husband and confidant. I have a four year old son that just loves having his dad home all day long with him. Unfourtunatly, my endurance is only good for a couple of hours then I have to go sleep for awhile. I marvel at how positive he is every time he wakes me up and asks “so dad, what do you want to do?” Inside I want to tell him to go away, but I somehow find the strength to get up and go play. These are the times when we are making happy memories. Not only for us, but for the people around us.
Be strong and be ready for the good days when they come around.
And remember “Don’t count the days, Make the days count!”
Thank you for your post,
AnonymousOctober 27, 2006 at 8:39 am
Tammie, I think Teresa has hit the nail on the head! It is a good thing to keep your spirits up, but I don’t believe in what I call forced optimism. It is important to allow yourself to feel miserable sometimes and share it with others. Otherwise you could end up very lonely. We know you are a strong person, and to acknowledge you feel down now and again only makes you more human and even stronger, because it means you are not running away from your own feelings.
AnonymousOctober 27, 2006 at 10:09 am
I am usually very optimisitic and even when I was in the hospital I was pretty positive. Sure I had about one meltdown day a week where I just broke down and worried about what if it isnt GBS and its something worse like ALS or what if I really dont get better and the facial paralysis is permanent? What if I get worse and die? But even through all that I was always hoping for the best… yesterday I seemed to have hit my first brick wall post GBS… I was tired and fatigued from overdoing it the day before, I had to work and go to rehab and I had my first day where I just felt like giving up. Today I am back to normal and being positive again.
So we all understand how it feels to feel down and yeah I think we just need those days to let ourselves feel blue and not be cheered up!
AnonymousOctober 27, 2006 at 10:29 am
I normally feel pretty positive but I have a couple days a month when I just get down in the dumps and depressed. I used to try to pretend that everything was okay but it just caused the stress to build up and then things got worse. Now I let myself cry about my frustration and then I am able to get back to feeling good about the things I can do.
It is important to let yourself feel both the good and the bad – but don’t let yourself get bogged down in the depression because that isn’t healthy either. If you start to feel that you can’t break that blue feeling then please get some help. There is nothing wrong with seeking advice or treatment.
In fact, many things can prompt these feelings and it is not just the frustration of GBS/CIDP. When things started to get really bad for me (and I knew that it was not normal for me to feel that way for so long) I asked my doctor about what I was feeling and found that I was starting to have an adverse reaction to my latest med. He changed my med and those feelings went away.
Remember, we are always here to listen and sometimes offer advice if needed. Hugs from me and all your GBS family — I hope you are feeling better!
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