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.