I’m so ANGRY!

I understand your anger to some degree. Mine is a little different because I watch my 12y/o, 10 at onset, suffer. The way I deal with my anger is volunteering, cleaning and eating. Pillow crying too!! Not many people understand, family included. It is almost 3 years and my anger is getting better. You are still new at this. Eventually you will learn to deal with your new life. It takes time. On a positive note, the weakness you physically suffer will make you 10 times stronger emotionally and in the compassion towards others department. You do not mention your dx., is it gbs or cidp? Are you on any treatment if it is cidp? Good luck to you and be as patient as you can with yourself and others, when your patience runs out, let them know. I tried to keep things bottled up and it didn’t work too well!!
Dawn Kevies mom

Hey Noni-

Thanks for the willingness to be honest! I was diagnosed with GBS in Dec. 2005, and paralysed from the neck down for eight months before beginning rehab. I, too, was very active, playing adult league baseball and practicing yoga four times a week, as well as volunteering, working F/T and having an active social life. Almost four years out from onset, I still have residual problems with my hands and feet. I live independently, and hold down a F/T job. Attitude id 98% of my recovery; its easy to succomb to the feelings of powerlessness and anger can get the best of me at times. But I have surrounded myself with positive, supportive people. I have NO ENERGY for negativity, as I, too, have fatigue issues.

I strongly suggest you cut out the negativity in your life, and get involved in an activity that you are capable of doing, and love. Idle hands (no pun!) is the devil’s work!

I hope you a speedy recoery, and remember to write a list of the things you are grateful for!!!

Peace, Dave

it is normal to feel very angry– embrace it, channel it and make it work for you. your illness is and should be dominate right now– so demand that, of yourself and anyone around you. also, remember, anger and depression are closely linked psychologically. you can move mountains with anger but you cannot get out of bed with depression. so again i say, embrace it and make it work for you, not your husband, [B]you[/B]…

best of luck–

You must realize that anger will not change any of the things you are angry about. I know how difficult GBS can be. I am two years from the onset and spent months before being able to take the first step. I still have problems but do not let them get me down. Any anger I experienced in the whole ordeal was short in duration. What I think about most in relation to the GBS is the many people who helped me come to where I am today–my wife and daughters who willingly gave of themselves to insure that I had constant support; the professionals who worked so hard to fix what could be fixed; old friends who came around to cheer me. I am thankful for each of them and for the abilities I have regained. It is what you have–not what you lost–that should occupy your thoughts.

I would like to add to what the others said that– you feel what you feel. It is nice to say “don’t be angry”, but virtually everyone has to go through that stage of grief sometime. Different people spend a different amount of time there. I hope that it is also clear that underneath people are also saying to you that there are ways to help to make the time in anger be more positive–to channel this anger into being a help to get through this. Depression is anger turned inward and this was also said–that it is often more beneficial to turn anger outward and use it than to lie in bed crying and feeling that nothing is ever going to go right again. Going from before to now after GBS is a huge adjustment and hard because it happens so suddenly and there is so much change all at once.
I would like to say a few other gentle words of advice to think about.
1. This has turned your husband (and foster kids?) life upside down as well and he/they likely have their own anger/issues with it. You all had a way that “worked” as a couple/family before and this “way” changed tremendously when you changed tremendously. You will have to work together to find a new way that works for both/all of you and that feels “proper”. It is sometimes, I think, even harder on people that love you when you get sick because they hate the fact that life has changed so much, but feel like they cannot say this because it is you that had the physical suffering. Foster kids have special challenges with changes in the “family”. Try, as you can, to look beyond relationships in this time still in crisis and be understanding that each person is affected individually and in the relationship, may withdraw or be more needy, and may travel in different path than you. Keep communication channels open and, as much as you can, try to speak in love and in respect for the others individual path through this time of challenges.
2. It is hard, hard, hard to deal with anything when you are terribly tired, in pain, and not sleeping well. As best you can with your doctor, try to see if any of these can be helped. This may be one of the best things to help the anger.
3. One cannot change the past. I am sure that you know this, but we all wish it so. All we can do is change the future and how we approach it and how we live with it.
4. I think that it is also harder for you than it might be for some others because your recovery has plataued and this is scarey. I have found it harder to deal with emotions when there is not progress in recovery. One thing to think about is if the IV IgG is optimal at this time for you–could more or a change in schedule help? I say this because it seemed to help and yet now you are not improving any more.
All these thought are not being negative, nor trying to tell you how to feel. We all just hope for you healing–in body, in mind, in spirit, and in relationships.
WithHope for a cure of these diseases

nonimarie,

I was 19 and pregnant when GBS struck. I was totally paralyzed. At my lowest point, I was hooked to a respirator, had double pneumonia with a fever over 104, my heart rate was erratic and my blood pressure was all over the place. The head of the intensive care came in and said, “You can fight and live or give up and die. It is up to you.” My first thought was, “easy for you to say.” I could not comprehend being that sick and surviving. I truly believe that had I not been carrying my daughter that I might not have cared at that point. My family was supportive but they had no way of comprehending the horrific ordeal I was going through. Unless you have lived it, there is no way to explain the fear, anger and anguish that comes with this insidious disease. Could anyone have conveyed it to you, or me, if we did not have it? I doubt it.

You are still less than a year out, so I wouldn’t get too discouraged yet. It took me years to gain some semblance of normalcy. You survived! Hang onto that and live in the moment.

Hugs, Boomerbabe

Get even! Understand your condition, get the treatments you need even if it takes A DOZEN neuros to do it!
As to the whole “WHY ME?” aspect? To that I can only say WHY NOT? You are alucky one to be chosen with a ‘rare disease’ and well, look at the ODDS of getting this stuff? It is, really, all in the roll of the ‘dice’ of life.

Go take a web ‘gander’ at coping with chronic diseases, and learn about how to turn that anger into a positive thing. I turned it into learning about my CIDP and from that perspective, I have also learned how to deal with ALL the complications of life this imposes on us. From parents to spouses-read a lot of past posts from good folks here who are coping with it all.
Since my own diagnosis of CIDP, I have also been diagnosed with [B]THREE[B][/B][/B] other immune conditions, and I am still around Kicking **** or whatever! Also, you mite take a look at MS support groups? As they are also victims of the dreaded ‘demeyelination’. You can learn a LOT from their strengths and coping mechanisms. The big “D” issue is what we have in common.

And YES! You are allowed to have a multitude of pity parties! Comes with the territory! Life can go totally SOUTH with such medical problems… Let it out and then GET ON WITH WHAT NEEDS TO BE DONE!

Heaps of hope and let us all know how things are going – There are good folks here to help as best we can.

Noni, Welcome to The Family!!! Please feel free to vent anytime you need to, talk to us like long lost friends, or just ask questions. We understand, we’ve been/are there and always will be! Never give up, on any aspect of you or your life. Let us know when you need a boost me up party-we can decorate the tavern up really nice, and All the drinks are on the house!!!!:D
I think you are doing pretty well for only your first year of recovery. Remember recovery can’t be shortened, it has a mind of its own, it is possible to recover for many more years to come, plateau to valleys to mountain tops back down to the valley and the roller coaster never stops.
Positive attitude is a plus! I think you better grab that other bootlace there on the floor-it will even your balance out abit in the future!!:D

If you haven’t already, register with the foundation, get the information and share it with your other half. I totally understand where you are coming from when it comes to marriage issues, jobs, home improvements etc. That alone is alot to deal with even without this crap. Try to get the snowball slowed down to get a grasp on it. It will get better-like we always say-gbs=getting better slowly-that goes for recovery and life.
We have Great laisons here in Ohio. Look them up at the foundation and get them involved, they can offer alot of hope, and great advice.
Please let me know if there is anything I can help with-I’m up here in Northern Ohio.
Hugs!! and Take care!!

just curious, what scares you about cidpers? 🙂

Noni,

Oh how I can relate to you and your anger. I’m post 71/2 years and have run the whole range. I had the most anger the first year, then went to sorrow. I felt so sorry for myself for a long time. I think that I’ve stated to accept the past few years but I still have anger.

What helps me the most is thinking that it could be a lot worse.

As far as your recovery, 8 months is not very long and I believe that there is a good chance that you may still improve. DON”T GIVE UP. Continue with OT and PT. Use what you have learned and work the body. Just be careful not to over do it. I improved for 2 years and even today am finding ways to help my residuals.

Take the rest of the day off,

Rob

Noni,
I smiled when you mentioned about not being able to wear high heels. I had GBS in 1986 and again in 2006. The first was milder than the second…and No, this does not mean you will get it again. Mine was major stress both times…in my humble diagnosis. I still fear high heels because of my unsteadiness. But I do think another year and I shall be wearing them again.
I could not look in the mirror for the first 3 years. I did not know the person who was looking back at me. I had to cut my beautiful long blonde hair off because it got knotted like someone put a blender to it.
There have been helpful comments so far on your thread. Let me add this – the anger is making your body produce harmful chemicals that will slow your healing. I read that anger intensifies Multiple sclerosis symtoms. So when you get angry, perhaps you can think of your body saying to you, ” Please…I am doing my best to recover…help me help us.” Stress is so bad for the body. You are just beginning your recovery even though it has been more than half a year. In GBS terms, that is still the beginning. Those delicate nerve endings only recovery at one millimeter a day..the width of a pin.
It sounds like your life was very busy to begin with. Do you think this might have lowered your immune system to begin with?
I believe that whatever happens brings us a lesson. I had already learned my lesson with GBS in 1986…why again? You sound like you are an exceptional person who helps others. Why did you need to learn this? Perhaps it was to learn what people around you are really like…like your hubby. All of my friends of 20 years abandoned me….and they were on my bank account. Perhaps you need to become more protective of yourself and become more discriminating as to who gets your attention and your energy. You cannot change others, but you can change your reaction to them. I have turned inward since my second bout of GBS. I saw that I was wasting my time with some people…they didn’t appreciate what I was doing for them.

Yeah, you have every right to be angry. I’m pissed about this whole affire from time to time, too. GBS effects all areas of our lives and it sucks!

I am 12 years into the affair, and understand your frustration, how few understand what you are going through, how it is difficult to feel a sense of support, etc. That said, it sounds like you are working a recovery program to the best of your ability, so what more can you do other than to let yourself feel pissed off. I found throwing a phone book against the wall 10 X helpful… at least it helped me relax.

I wish I were better at coping with adversity. I saw Christopher Reeves deal with his issues so gallantly and with such nobility, I feel the slump who has not much to complain about. Others deal with much greater adversity than my own with a grace I envy. Instead, I have to spit and yell and hit trees with sticks in frustration. Damn change in lifestyles forced upon us! It sucks, I tell ya!

One thing that helps me: I have two hobbies to keep my mind in a positive mode : I can still play my Bass guitar and I play Internet computer games with friends… I have an outlet. What is your outlet????? If you do not have one, better start thinking about including something in your recovery plan!

/I can’t walk in heals ether… never did understand how a woman could do such a thing without toppling over 🙂

Hello Noni.
I am on my 2nd year of recovery.As all have said the anger is something we have to deal with. What I did was put my anger into recovery. I made up my mind I was going to get better.
Today with Gods blessings I am walking and almost back to normal. I am one of the few blessed ones that had a mild case.
In you letter and replys I keep seeing your Neuroligist and husband coming up. If you are unhappy with your doctor then get another one. If he has to brag how good he is then I would definatley worry.If a doctor has to brag how great he is then that tells me he is covering something.
In the 1week of finding out you had GBS were you put on five days of IVIG???Most of us were.Therpy was my link to walking and stop useing the walker–cane and start useing my feet. NEVER STOP THERPY as long as it is offered to you.
Your husband. I was so furious at your husband allowing you to do things HE should be doing. Why did you have to sell your car why isn’t he working. Why isn’t he giveing back to you who from what I have read have supported him most of his life.
NONI NOW is the time you put NONI as number ONE. Carolyn said it as I am saying it.Stop trying to save a ship. The wood is rotten and all you are doing is allowing yourself to go down with it.Noni do for your self. Anyone who is not loveing or careing or supportive let them SINK.
You have a loveing–careing family here. They carryed me and now I help them carry others. We will be loveing and careing and supportive and it all comes from the heart.
I have you in my prayers Your unconditional friend (Lakoda)

Hi!

Sorry to hear about the issues this has caused in your marriage. yes, sometimes it takes something big like this to see the real person you are married to….I was married for 1 year when I got GBS back for the 2nd time and I saw the real him…sounds like your husband.

We did the counseling for 1 1/2 years and for us it did nothing to improve our relationship. You have to BOTH be willing to change. My husband would say everything right in the therapy sessions and apply nothing new at home. Ours ended in divorce (by my request).

You need to get out and surround yourself with your volunteer agencies like you have been…the more you are around people and have some sort of social life and support group then the stronger you become.

I have been through it 3 times now…life is too short.

Also, insomnia…this may sound strange, not sure if you are religious…but, I say a prayer every night thanking god for everything I do have…support groups, friends, family and I simply ask God to help direct me to the place he wants me to be or become the person he wants me to become. Also, you just have to ACCEPT that we cannot control this…you have to use your anger to actually force yourself to remain calm and think only good thoughts when you are going to sleep. It’s hard to do but you have to FORCE your mind to only think positive things before you go to sleep. This has worked for me. No sleeping pills were able to put me down for the night…all night. It was only after I was tired of taking sleeping pills and force myself to pray and give it to the higher power and think only positive thoughts.

Now that I am through GBS 3 times I feel it has made me a stronger and better person.

You have to do this for yourself…nobody can do it for you…there is no magic pill. Pick up the phone when you are feeling down and call someone you know with a sense of humor. I know a guy who has now lost both his legs to diabetes and when I called him after his second surgery he was laughing and saying, “weebles wobble but they don’t fall down” What a hysterical man! He has been through so much and still has a sense of humor even right after surgery for removing is last leg! People are amazing when they are down and out and you can learn from them!

I hope you are able to find some peace for yourself and I truley hope your husband is able to adjust.

I do believe everything happens for a reason and you cannot open new doors without closing doors…so, something good will happen to you that is just around the corner…I am sure of it! You will see!

I love the Greek Poet and Philosopher “Heraclitus”. “The Light of Integrity. The soul is dyed the color of its thoughts, think only on those things that are in line with your principles and can bear the full light of day. The content of your character is your choice. Day by day, what you choose, what you think, and what you do is who you become. Your integrity is your destiny….it is the light that guides your way.”

Take care,,,keep in touch…and above all….if it feels good then do it! Get out there and socialize a bit and call up those people who seem to always be able to make you laugh! Tell people you need a good laugh! People do not know how to react with us…do they share in our misery to show their concern? They think that maybe if they make jokes with you that you may see it as disrespect or not caring…I found this out through direct questions to some of my friends. I am very forward with people…and it surprised me to find out that they actually were afraid to joke with me about it for fear of me thinking they don’t care. They were surprised to find out I needed the joking around to get me through it!

Lisa

Hi..hope your day is going well. I remember we (my family) had a decision to make. I could no longer stay in the hospital and was to be moved to a rehab facility. The choices involved facilities that were up to a 1/2 hour away or one across the soybean field, less than 5 minutes away. The caveat was that my father-in-law had died in front of my wife and daughter less than a year earlier at the facility that was closest. I was torn on what to do. On the one hand I didn’t want my family put at risk because of the extra drive time. The other hand said maybe they couldn’t handle the emotional strain of having lost a loved one at the closest facility. What would you do? I did what was best for me and chose the nearest facility. I ended up in the room next to where my father-in-law died. Despite my reservations, it was the best decision for all of us. I received excellent therapy, which I attribute to how well I have come back today. I guess I’m using this story to illustrate that it’s okay to be selfish and treat yourself as #1. When you’re better, you’ll have plenty of time to submit to life’s other demands.

Additionally, I have noticed how we who are recovering measure our progress
by the things we were able to do before GBS. I wrote on another post about how my daughter and I volunteered for a therapeutic riding facility. Trained therapy horses are used to help individuals with special abilities. Participants range from school aged kids with autism to adults from group homes. Some are in wheelchairs. Volunteering has made me realize how small my problems are compared to others. I’m happy to say that I recently was able to return to this program by leading and sidewalking. What a joy!

Don’t be afraid to take care of your needs first. And for those of us who are trying desperately to get our former lives back, continue to be patient. It’s all about staying positive and doing your best to connect the dots…..one day at a time…….good luck!!! Tom