Sorry I haven't posted in a while, I fortunately got some really great news and I have gone into remission. So for all of you who are rightly down in heart I assure you there is light at the end of the tunnel and it isn't an on coming train.
Sadly despite this great news my message brings some sadness. Although I am pretty much to full health and the only lasting effect of C.I.D.P appear to be sensation loss in my peripherals my mentality for life isn't great. As Im sure those of you who are fighting the battle realise the importance to little events in life I find myself forgetting them.
When I was ill nothing mattered more to me than just one smile which got me through the day and now I feel resentment towards myself because all of a sudden it is no longer enough.
I do not send this message in pitty or desire to cause a fuss of "boo hoo look at him he is fit and we are not", but more so as a way in which to remind you great people that even though you feel the world is without any hope you probably know more than the average person about the value to which should be placed on simplicity such as walking in a straight line .
so that is my message from the other side, I wish you all the best and as always I am here! And will keep trying my best to come and send messages.
I'm glad you are in remission, Tom. You are right that illness can help us appreciate the bright moments in life just a little bit more. Thanks for checking in!
George Santayana is known for the famous saying, “Those who cannot remember the past are condemned to repeat it.”
I carefully stash away my most painful memories, praying I will need them to keep me humble as my health improves. I can easily, and have, take for granted the simple wonders of life.
Tommo, I hope that you appreciate your good fortune. For me, I treat my current upswing in health with respect, knowing that this is a chronic and recurring disease. Today, I can talk, type, and stand and walk. I don’t know what tomorrow holds, so I live in today and I’m grateful for my good luck.
I can’t let others’ expectations cloud my thoughts and emotions. Just because I no longer look skeletal doesn’t mean I’m not still fighting this thing. Just because I’m back to work doesn’t mean my psyche isn’t scarred. I have a right to my emotions and fears. But it’s up to me to push on through them.
I know we’ll be ok. We’ve come through hell. We understand each other.
Wonderful news! You'll adjust to your new situation before too long. I've been in and out of remission a few times, and both relapse and remission are upsetting in their own ways. What a journey, and aren't we so fortunate to still enjoy life, friends, family, and sometimes just a smile that gets us through the day. All the best to you. Hoping to be there too in the near future...
Remission is a wonderful word and a goal I have for myself. Best wishes to you in the future. This disease is a process for our mind, body and soul. Take care- Marfa
Hi Tom I am very happy for you. My symptoms are still a challenge every day but I have been working very hard at appreciating the beauty that surrounds me. You are so right about how a smile from someone can change your day. I try to offer a smile to strangers, hoping for one moment they don't feel so alone. I would try not to worry about tomorrow or yesterday for that matter, and celebrate your good fortune. Peace Nancy
Hi! I've been in remission since December or so of 2010. Sometimes I feel that my fingers are a little numb but it goes away quickly... I know what you're saying when you say you feel resentment towards yourself... I used to feel that way and I was really depressed last year... (I'm leaving depression behind now... and I'm actually crying right now but it's all part of the process). It's difficult and frustrating because you tend to meet people who hasn't been in our situations... and they don't appreciate what they have... and we do anything in our power to prevent them from suffering and we forget that that's not possible.
My family don't want to hear a single word concerning CIDP... they were so scared back at that time and they don't know how to handle it and I was really mad at them because of it since I was the one with the legs paralized and not them. I don't want anybody to suffer the way I suffered and I felt so alone because of that... because people don't want to be reminded that things like this can happen. So sometimes they just tell you "Don't even talk about it, it won't happen again"... and it's terrible because you really need to talk about it.
I to am in remission.I feel very lucky from barely being able to walk and that was with the aid of a walker to now playing golf every day and can now even run a bit.My doctor is amazed at my recovery.They are going to do a write up in the local paper about me next month.I will be signing autographs afterwards "laughing"
Prednisone is my only drug I`am taking.Started out with 80 mg a day and now I`am at 5 mg a day.I have gained about 20 pounds but I`ll take the trade off for being healthy.
My words of wisdom are just don`t give up hope,if I got better so can you.
Good for you. Perhaps once the inflammation subsides more your thoughts will be clearer. Try to eat all the anti inflammatory foods including deleted all but grass feed meats with hormones or antibiotics. Monitor you glucose levels and thyroid function. These can have a major impact on memory.
Can you expand on the dose and duration along with any other OTC's you took that may have put this into remission? Thanks for sharing!