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Living with Polyneuropathy CIDP, GBS, & CMT

Attitude Adjustment


#1

Before I came down with GBS/CIDP I thought I was a fairly positive, productive, reasonably successfully person.

On Jan 23rd of 2012 I woke up with numb toes.I scheduled a visit to my family doctor and went to work. I found the feeling to be annoying. The next day when I woke up the bottom of my feet were numb as well. The third day I began to lose my balance. I saw my family doctor on day 4 and he perscribed neurontin and scheduled me for an emg. On day 4 I fell climbing up the stairs into my house. I scheduled a visit with a neuro for the day after that.

The rest is history -- hospital (5 weeks), home rehab (6 weeks), outpatient rehab (6 weeks). Self rehab at home (4 weeks).

After almost five months out of the mainstream of life, I went to my neuro and said, "I want to go back to work". He said ok, but remember your GBS has now become CIDP and you will fight the battle daily.

With that "positive" diagnosis, I finally went back to work.

When I rejoined the world, I felt apprehensive - what if I fall? What if I can't really make it through my shift due to exhaustion? What if my driving is impaired? What if, what if, what if?

One day I said to myself, "You just came through a storm and now you can see the sun shining.

Smile, grab your cane and be strong."

What I realized was -- life is precious, life is beautiful, if you want it to be, life needs to be confronted, consumed, used, and enjoyed no matter what happens, how you feel, or what your diagnosis.

I have managed to go to Mazatlan for a lovely week sitting in the sun, sightseeing, and tequila drinking.

I also went to my 55th High School reunion and saw one of my old girlfriends who now is in a wheelchair suffering from MS. She looked radiant and we shared a knowing few minutes while her husband went to refill her wine glass. I missed the 50th reunion because I was too busy. In the 5 years between the two, 30 people had passed and were not present. We made plans for year 60 and decided to get a smaller venue.

I am going to visit my wife's mom in Las Vegas next week. It is her 86th birthday. Can't get more special than that.

My point -- life is wonderful -- live it -- don't worry about how you look, how you feel, or what anyone thinks of your disability.

Have fun with what you have -- because any other option leads to dispair.


#2

beautifully shared, thank you


#3

Thanks for your uplifting comments. I find daily prayer to be an essential part of staying in gratitude and being happy every day. Constant pain is a game changer and without a decision of be joyful no matter what, you can fall victim to sadness and deepression.

I like to remind myself that I am not dying and on my worst day, there are millions of people who would change places with me in a heartbeat and be glad of the chance.

LIfe is wonderful - you are so right.


#4

So absolutely true Robert. Since diagnosis in 2008 I have continued to live a very wonderful life.
Like you I recognised very early on thar things could have been so much worse.
Recently, for the first time since diagnosis, I asked my GP to give me some time off work, I wasn’t depressed just ‘fed up’. That in itself was a revelation, knowing that its acceptable sometimes to be just a little angry.
I am back on top form, ( thanks to 4 weekly ivig’s) and, just like you too, looking forward to travelling to Las Vegas next week with my beautiful sister and friends.
Rod Stewart might notice a few physical changes since I first saw him in 1976 but believe me, I will be rocking with the rest of them at Caesars Palace!
Stay Strong and be Happy.
Jackie. UK.


#5

I was diagnosed with CIDP in Dec. 2002. I’ve had so many emotional issues, especially in the beginning. It can consume you, or you can rise above it and accept this is life, for the moment or years ahead. But life isn’t over yet. Live it to the best of your abilities. Despair, stress, just make the illness worse. On days that you are weak you must not try to overdo. Wait for your stronger days to accomplish more. Make sure to enjoy plenty of sunshine and fresh air and surround yourself with people who love you. The best medicine of all!


#6

Wow, thank you much for getting me out of my pity party. Your story is mine too. I have a few different issues, but the bottom line is I need to claim my life back and get back in the game. It is so easy to give up when nothing is working and the pain keeps coming.

You have inspired me and I want to truly thank you for that! You gave me hope.


#7

Janie reminded me that our spirit is not effected by CIDP.

Prayer is one of the greatest medicines that can be used to fight CIDP.

Although Job was tested, he survived and came out of the fire stronger and a lot more knowing about his "inner strength" given to him by the Lord God.


#8

You are right. Starting right now I am going to be more positive and focus on what I can do!


#9

Very good posting. After I came down with CIDP, I got depressed about all the things I could no longer do - play golf, cut my own grass, etc. Then I gradually realized that there are lots of things I still CAN do. I can still enjoy photography, serving as treasurer for a small non-profit, being active in my church. These are all things that do not involve a lot of standing or physical labor, and they let me exercise my mind.

Now I try to focus on the positives, the things that I still enjoy, and be thankful for those. It has helped my outlook a lot.

Bill


#10

Thanks for such an uplifting message. I agree. Life is what you make it. I listen to my body. If I am tired I rest and relax. I actually have some positive vibes spray that I spray on every morning...LoL. Last summer I drove to Reno to visit my family. I am a 67 year old female and the trip is 9-10 hours. I went on 3 small trips also. One to Crater Lake in Oregon with a friend, 2 times to the Oregon coast. Once alone and the other time with a friend. I refuse to live in fear of what if's.


#11

Beautiful. Especially touching was your encounter with an old girlfriend who you described as "radiant". Still waters of the soul can sure run deep when we learn to suffer with dignity and a grateful heart. And when we remember how many have it so much worse:) Thank you for the great word.


#12

Sorry.I replied to your great post in the wrong place. Please scroll down:)


#13

I was diagnosed with CIDP in January 2012 although I had symptoms for a year prior to that. I can no longer drive the distance I used to, visiting family, but I have started taking the train. It is a beautiful trip(Washington-Oregon) it is still difficult but it allows me to travel. I love listening to music, a little Muddy Waters this am and all is OK. (along with my doe and her yearling making their daily visit for apples) It is hard to stay positive but worth the effort, I give time to being grateful every day. Peace Nancy


#14

Life is good. Thank you.


#15

Gratitude is everything. It is tough sometimes when you can’t do what your mind still thinks you can, but your body doesn’t cooperate! Very heartwarming story! Thanks for sharing! BTW - it’s been almost a year since my CIDP diagnosis…I am at Disney World with the family…walking. One day at a time.


#16

Just keep on walking -- use a cane - a shopping cart, a walker -- whatever you need to keep on going forward - Live Strong - Say hello to Mickey and especially Goofey for me.

Smannakee said:

Gratitude is everything. It is tough sometimes when you can't do what your mind still thinks you can, but your body doesn't cooperate! Very heartwarming story! Thanks for sharing! BTW - it's been almost a year since my CIDP diagnosis....I am at Disney World with the family....walking. One day at a time.

#17

It’s all about adjusting your sails. When I get down I go back to the day that I had to be lifted into the MRI machine, unable to feel or function from the neck down. When you have been there and have improvement there is far more light than dark at the end of the tunnel. Find joy every day!


#18


:):):)
Marfa said:

It's all about adjusting your sails. When I get down I go back to the day that I had to be lifted into the MRI machine, unable to feel or function from the neck down. When you have been there and have improvement there is far more light than dark at the end of the tunnel. Find joy every day!

#19

I am so glad you were diagnosed so quickly. You were so very lucky. I wish so bad I could go back to work. Unless I get a sct or another new procedure, working probably won't be in my future. But I guess that is okay. I can use this time to do some other things... I was dx in 2009 with CIDP, and became paralyzed because I had no treatment due to being misdiagnosed. But I have a lot to be thankful for.

Janie said:

beautifully shared, thank you


#20

You have an amazing attitude, God bless you!!!