AnonymousMarch 21, 2011 at 1:56 pm
I have been on and off the site since i came home from the hospital in may 2010.
I have found such good insights, information and support here. HOWEVER, i can’t get passed the depression of it all. sometimes i come here and read the posts and i get so depressed. it could even be the most positive uplifting post out there! i don’t know if it’s fear or if it’s just the reminder that i have this condition, i don’t know but it feels like i am drowning sometimes. it takes my breath away.
i am so scared that in a few years i will have a relapse or what happens when i am older and i can’t take care of myself? will i be taken care of as well as i was taken care of just recently?
i was paralyzed from march 29, 2010-august 2010. i am now back to work and walking with aircasts.
i don’t mean to be a downer and i don ‘t want to stop coming here…i just can’t get past the fear of thinking that i have this forever. it was such a horrible experience and i don’t ever want to go through it again. i don ‘t think i would survive it.
AnonymousMarch 21, 2011 at 2:22 pm
So sorry you have been through all that you have. I hear what you are saying but think to myself where would I be without the knowledge and support of those on this forum in only a few short weeks for me. This is a lonely disease in that most in our worlds don’t understand it but just knowing that others like you have gotten so much better keeps my spirits up. Hope you keep sharing and posting but do understand that sometimes a break is needed as well and that we all have to do what keeps us feeling our best. Many hugs being sent your way.
AnonymousMarch 21, 2011 at 3:10 pm
[QUOTE=micahsmom]… HOWEVER, i can’t get passed the depression of it all. … i don’t know if it’s fear or if it’s just the reminder that i have this condition…
i am so scared that in a few years i will have a relapse or what happens when i am older and i can’t take care of myself?…
… [COLOR=”Green”][B][U]i am now back to work and walking[/U][/B][/COLOR]…
…i just can’t get past the fear of thinking that i have this forever…[/QUOTE]
It is probably quite normal to experience the full range of feelings with this, or any illness, or death in the family. This is sometimes referred to as the grieving process.
There are probably lots of ways to say it, and live it. Here are 4 ways:
2. Searching and Yearning
3. Disorganization and Despair
4. Reorganization and Recovery
Some people get lost in the despair (depression) part of it. I did.
Recovery will gradually take place when you begin to cut out those negative thoughts I’ve quoted above and focus, instead, on the positive- You do have one. I highlighted it!
Notice, and immediately let go of, your negativity so you can replace it with positivity.
It takes hard work. You can do it. It’s called having fun. Ignore what you cannot do. Forget all about the glory days, focus on little successes you have now.
good luck. do what it takes.
AnonymousMarch 21, 2011 at 3:26 pm
Yes, it can be depressing when we read so many sad cases, improper treatment, wrong diagnosis, residuals and challenges. I have the same fears and I’m almost 20 years post GBS.
When it’s too much to deal with, I take a break from the forums for a few days and typically respond when I have information to share or if it’s a newly diagnosed person or caregiver struggling for answers.
We all have good and bad days, but you know what? So does everyone, not just CIDP’ers and GBS’ers. Take a break. Do what you can to feel more positive and not let fear win.
Take care of yourself and stay strong.
March 21, 2011 at 8:47 pm
I think depression is an actual part of having a disease that does goofy things to your nerves. I felt like my brain was drowning in black ink.
My neurologist prescribed nortryptalin which is an anti depressant AND a pain medication in addition to my Lyrica. It took a couple of weeks to make a difference – but now my emotions are much more even. I am still angry and unhappy to be sick but there are no more wild dips down into the ink.
Please talk to one of your medical team and see if they think an anti depressant would help you.
Take gentle care of yourself,
AnonymousMarch 22, 2011 at 12:24 am
I was pretty depressed about my CIDP diagnosis in Oct. 09. But when the IVIG made me feel stronger and I was able to work again and be useful, I felt somewhat better. But now, I am worried about the future and how I will be when I get older. Always worried if someday my medical insurance may deny my coverage of IVIG. I guess I can say my life is pretty stuck because of my lifeline of IVIG of every ten days. Can’t really travel.
AnonymousMarch 22, 2011 at 12:47 am
I sometimes think about the future and get worried. My CIDP seems stable now, but I am concerned that it will flare and perhaps disable or even paralyze me. Or I worry that IVIG will stop working and the terrible pain will return. Then I think about the prospect that medical science will come up with new and better medications, or perhaps even a cure. I think about the possibility that I will go into an indefinite remission. There is at least as much to be positive about in the future as negative.
March 22, 2011 at 9:26 am
Thinking and pondering about what if is what feeds the depression in my opinion. We were only 9, now 14. Currently things are not going well, but there can be months at a time that it is. I TRY, not always successfully to always keep a picture of someone who has it worse in the back of my head. Sometimes it works, sometimes it doesn’t. All I can do is try and just keep praying ivig and insurance keep working. One positive outcome from all of this crap, it truly has made both of us stronger as individuals, it is as if we are able to get through things other people find horrendous with relative ease by comparison. It also has helped us to realize that there are kind people willing to help. So, some good has come out of this. Just try as best as you can to be strong. I did notice that you mention that when you come here, no matter how positive the post, you get depressed and reminded of the disease. Maybe the site is not helpful to you in a positive way in the times you forget about your illness. If you are able to forget about it at times and feel like normal, maybe those times would be a good time to forget about this site too!! Try to just come when an actual problem arrises so you can get help and info and then just continue on. Everyone here understands your pain and depression and would be happy to help at the times you need it. Good luck to you!
AnonymousMarch 22, 2011 at 5:37 pm
Emily was 4 years old when she was dx’d. I remember sitting in the hospital room watching her sleep while she was getting an IVIG treatment, shortly after relapsing & being dx’d with CIDP (original dx was GBS).
I decided in that moment that we have CIDP, CIDP does NOT have us. Meaning, this disease cannot dictate our lives…we are in charge. Of course, we have to make adjustments here & there though.
It sucks to be sick, it sucks to not feel well & it certainly sucks to hurt. But it’s important to look at the things in your life that don’t suck. Even if it’s the sun shining or the birds chirping (as long as it’s not too early, LOL).
Emily has some bad moments but I try to remind her what good things we’ve learned about ourselves in the last 5 years & how much we’ve grown.
I hope you are feel better soon.
AnonymousMarch 22, 2011 at 7:32 pm
Depression really affected me before my diagnosis of CIDP in Feb 2010 but hasn’t been an issue for me since because I haven’t had any regressions or setbacks once I received plasmapheresis treatments.
I told my doctor that I wasn’t going to take anti-depressants once I came home from the hospital and that was it. I haven’t taken any for a year now.
But having CIDP unquestionably changed the lifestyle I live now and I take out all of my aggression at the gym 5 days a week.
My CIDP is now in full remission and I also dropped 130 lbs to boot. I’m physically able to do things that I haven’t done since high school (I’m now 37).
This enormous change has me feeling just as strong mentally as I do physically.
To be frank, and people may think this is rather selfish, but the mindset that “others have it worse than I do” was never something that worked for me.
Sure, I realize some people have it worse, but how the hell does that help me? I was a 35 yr old man who almost died in a nursing home! At that point, I didn’t care who had what worse than I did. I just wanted someone to figure out why my condition continued to plummet.
Once that predicament changed and my neuro finally figured out what was wrong, everything else changed – both physically and mentally.
I didn’t have many positive thoughts until I had positive [B]results[/B]. In my opinion, it didn’t work the other way around.
But I’m a rather unconventional kind of guy, so I don’t expect others to follow in my footsteps.
AnonymousMarch 22, 2011 at 8:02 pm
all your words are helpful reminder that i am not alone. it has been overwhelming at times. i am coming up on a year that i went into the hospital and didn’t come out for two months (with a new baby). i was 30 weeks pregnant when i was diagnosed.
i think it’s the year anniversary that is bringing up all these negative thoughts. i have truly been blessed in this year and believe me…not all has been awful. it has been the hardest fight i have ever and will ever endure. my body rejected me and wasn’t listening to my directions. now i am getting stronger every day and i can take care of my baby. i know that with everything bad comes something good and i know with strength, fight and the never give up attitude i will only overcome. my family has only grown stronger and without them i know i would not have made it through.
i am on cybalta and i am sure that has helped as well.
i know i am a fighter and i am stronger today then i was a year ago..emotionally. physically…eh..i got a ways to go.
it doesn’t make me feel better to think other’s have it worse only because i don’t like to think of others suffering. i don’t know how to get rid of the anxiety that this ‘condition’ might come back with vengence…i have been trying to put it in my head that the stress is what might lead to a relapse.
sorry i am venting and my thoughts are all over the place. sometimes it’s more than i can handle being a single mother, working full time and having a condition that limits what i can do. ihave learned that everything takes longer, i need to have a plan in place before i do anything…think everything through for all possible issues that might come up physically but in the end i try and i can only do that.
thanks again for all your thoughts i do really appreciate having a place where i can vent without having to worry about making sense while i am doing it.
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