Recovery frustration and general struggles

General General GBS Discussion
#1

Hello. I just found this site and actually started crying with relief, there are no support groups where I live since it’s a relatively small town (32k people in the north of Sweden) so not many people here have ever heard of GBS, not even the doctors could figure out what it was, they had to send me to a bigger hospital.

Anway. I’ve been at home for about three weeks now. I live alone after separating in october, so it’s been a real struggle. It wasn’t until last week that I was able to get around without my wheelchair. I can’t walk very well, inside it’s pretty doable for short periods of time, but outside with shoes on I fall over after only like 20 feet. My ankles just buckle without warning and into the pavement I go. Even with a cane or crutches or even a walker it’s very hard for me to stay upright on uneven surfaces so, outside is still wheelchair territory. Regarding getting around inside I stumble around like a drunk person, losing my balance and leg control every other step. I live in a one bedroom appartment so that’s actually been helpfull since the limited space offers more things to grab onto, I lean on the walls and furniture quite a lot. I cook sitting down by the stove, shower sitting down and if I have to lift something I use my wheelchair so I don’t fall over. The pain is durable as long as I don’t over do it, just s few minutes too much and I’m in bed the entire next day. I used to have a friend who came over to help me but she has work and I don’t want to be a bother so I’m alone 80-90% of the time.

The most frustrating part are the weekends. I have a son who turns two in december and from friday afternoon to monday morning it’s just me and him. I can’t carry him obviously and just getting him in and out of his bed is hard enough. I live on the second floor, so going outside is outside is out of the question since I can’t help him down the stairs, I don’t dare to. When he falls over or bumps something I can’t pick him up to comfort him and getting to him takes much longer than I can handle emotionally, not being able to help my child just breaks my heart.

I have a dog whom I can’t take outside (100lb one year old great dane mix) so I pay a girl to care for him during the day, I meet with a Physical therapist every other week for twenty minutes but other than that I’m on my own. I don’t mind, I do okay, but sometimes I just feel so forgotten and alone.

On top of the guillian barre and transverse myelitis I also have ehlers danlos and have struggled with aspergers and severe anxiety since I was very small. I don’t know who to turn to, my family tries but they don’t understand how hard it is and I don’t wanna whine constantly to remind them how much I’m struggling. I don’t have many friends.

Today is a bad day pain and energy wise, I slept until 4pm for 13 hours straight in spite of several alarms, and all the other symptoms are also worse, sore throat, throbbing sinuses, neck pain, and difficulty breathing to name a few. On days like this I feel like everything is just for nought and I’m so scared of getting worse again even though I know it’s highly unlikely and I just overdid it yesterday.

How long did it take for you to start to feel relief from the general symptoms? Not the I know I’m just in the beginning of my recovery and I try not to rush but at the same time it’s just so damn unfair, I’m only 25 for goodness sake.

Thanks for reading, I needed to get all that off my chest.

Edit: just wanted to add that the doctors suspect I’ve had the transverse myelitis since I had my son almost two years ago. I have during these last couple of years been in and out of the ER too many times to count, each time being sent home after being told it was just anxiety. I was admitted for two months to a psych ward when my son was 7 weeks due to symptoms I now after reading up on my diseases probably were caused by the TM.

#2

My goodness, you really do have it tough. It sounds like you have more going on than the GB. I am glad you were able to vent on this site - that is probably theraputic in itself. Well, you have a 2 year old. Many people would give a lot to have a healthy child like you have. A friend of mine just adopted a child from Africa that was 3 years old. It was a long and expensive process for them. Things will get better for you - it just takes time. Since you are pretty confined to your home, you may try some chat rooms to get a little contact with people. Blessings to you !!

#3

Hi Cecilia. I think you have been very brave enduring GB & other conditions at the same time, especially when you don't have a lot of supports. I hope you can find support in this site. You are only 25 & should be able to recovered well, but it takes time. At the moment focus on small step at a time, don't push too hard. I know it's not easy when you have a 2 yrs old. At 2 yrs of age he should be able to understand simple instruction. Instead of carrying him, ask him to come to you, climb to your lap & give him a cuddle. You can still play with him when you are sitting on the wheel chair, read stories, sing songs, throw a ball. Focus on what you can do, don't focus on what you can't. And eventually you will be able to do all you wanted to do, it just need time. In the mean time, take things slowly, take it as a break from busy life schedule.You are young & a bright future is just waiting for you. God bless!

#4

I pray for your strength Cecilia, thank god you're so young. You will get better and this will be in the past. I'm lucky, I was hospitalized 8 days after my symptoms first appeared. Things were bad, they got worse, and now they are better every day. You will get better too, day-by-day.

#5

GBS stands for get better slowly, and you will. Day by day. I too felt so lucky, when I first got sick, to have found a place like this to land. Now 13 yrs. later, I am happy to give back some of what I received. Keep smiling, but it is also ok to cry.

#6

Praying for you Cecilia, wow,you are amazing, the courage and strength you have already shown blow me away, your son is so blessed to have such a strong Mommy. You will beat this and I pray for a complete recovery for you sooner rather than later. Enough already of this GBS etc. and so I’m glad you shared, you are an inspiration for all of us to keep on going on this return journey to wellness. Bless you!

#7

Thank you for your kind words! I am feeling a bit better again today, life will go on.



Nebretta said:

My goodness, you really do have it tough. It sounds like you have more going on than the GB. I am glad you were able to vent on this site - that is probably theraputic in itself. Well, you have a 2 year old. Many people would give a lot to have a healthy child like you have. A friend of mine just adopted a child from Africa that was 3 years old. It was a long and expensive process for them. Things will get better for you - it just takes time. Since you are pretty confined to your home, you may try some chat rooms to get a little contact with people. Blessings to you !!

#8

He is very good at doing things himself, he even puts his dishes on the counter after eating and he loves helping with eveything he can, he’s the sweetest child I could ever have dreames of.

I remember when I was still in the ICU, the first time they let me leave the ward in a wheelchair I felt so free! It was amazing. I only got down the hall and back but it was so much more than what I had done in a long time. I’m gonna try and find that feeling again.



Evalyn said:

Hi Cecilia. I think you have been very brave enduring GB & other conditions at the same time, especially when you don’t have a lot of supports. I hope you can find support in this site. You are only 25 & should be able to recovered well, but it takes time. At the moment focus on small step at a time, don’t push too hard. I know it’s not easy when you have a 2 yrs old. At 2 yrs of age he should be able to understand simple instruction. Instead of carrying him, ask him to come to you, climb to your lap & give him a cuddle. You can still play with him when you are sitting on the wheel chair, read stories, sing songs, throw a ball. Focus on what you can do, don’t focus on what you can’t. And eventually you will be able to do all you wanted to do, it just need time. In the mean time, take things slowly, take it as a break from busy life schedule.You are young & a bright future is just waiting for you. God bless!

#9

It’s painfully slow sometimes but I know deep down that I am getting better even though it might not show immediately. Some days are harder than others, as we all know too well, ans yesterday was a struggle, but reading all the replies here and other discussions has helped me feel less alone and more hopefull. One day at a time, one teeny tiny step at a time. Just hard to remember sometimes.



Lily said:

I pray for your strength Cecilia, thank god you’re so young. You will get better and this will be in the past. I’m lucky, I was hospitalized 8 days after my symptoms first appeared. Things were bad, they got worse, and now they are better every day. You will get better too, day-by-day.

#10

Thank you. I whole heartedly agree though, enough with GBS and doctors and hospitals. I hope we all get better asap!



Gayleen said:

Praying for you Cecilia, wow,you are amazing, the courage and strength you have already shown blow me away, your son is so blessed to have such a strong Mommy. You will beat this and I pray for a complete recovery for you sooner rather than later. Enough already of this GBS etc. and so I’m glad you shared, you are an inspiration for all of us to keep on going on this return journey to wellness. Bless you!
#11

Thank you for your reply. It’s easy to miss the small things some days, one has to fight to remember to look.



Jennifer said:

GBS stands for get better slowly, and you will. Day by day. I too felt so lucky, when I first got sick, to have found a place like this to land. Now 13 yrs. later, I am happy to give back some of what I received. Keep smiling, but it is also ok to cry.
#12

Hi Cecilia,

We have a great-granddaughter named Cecilia. We call her Ceci. So sorry that you are having such a difficult time, but glad you discovered this site. I remember how elated I was to find it. Your condition with the GBS sounds a lot like mine. But I was in hospital/rehab 4 1/2 months. My ankles also kept turning over so my therapist wrapped my feet and ankles in ace bandages and then put me in laced up hiking boots for support. I was finally able to get up on my feet and slowly start walking between the bars. Then on a walker. I am 73 years old and it has been 2 yrs since I came home. I have good and bad days. I too walk like a drunk duck and hold on to things. When I go out I use a cane or my walker. GBS recovery is very slow, but you are young and probably will make a complete recovery. You should try to do therapy exercises even without your therapist. Learn to pace yourself and do not get overtired. I get fatigued quite easily. You are so blessed to have your son. My 29 yr old granddaughter just adopted 5 yr old twins. Hang tough and continue to visit this site. We will all be glad to answer your questions. Hugs & Blessings.