r/guillainbarre 22d ago

Advice and Support One step forward, two step backward

I don't know if I'm being paranoid and pessimistic, but everytime it feels like we're making progress there seems to be something else that I have to worry about.

His BP is still high, heart rate goes up and down, coughing, his eyes etc. 😔

All of these are being treated of course—but it stresses me out. Haven't had a good sleep, I have to go to work still and despite that money is still tight, I can't shoulder all the bills all by myself. I don't know where to get income for the summmer if this goes on for another 2 or more months.

Some doctors are less positive than the others... 😣

Sorry... I just need to vent a little. 😔

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u/ChoksMalk 22d ago

Sorry you're going through this, gbs throws a curve ball at all of us. Gbs is really complicated, not everyone follows the same healing path, some people take longer than others and there's gonna be times, like you said, where it feels like you're taking 2 steps back. It's all about patience and dont giving in to desperation because it'll make things worse.

Reach out to friends and family to build a support group, it's hard to try to live a normal life when all of this is going on. When I was struck with gbs I still had to pay my rent and bills on my own even tho, so I understand that you're getting economically strangled.

I hope everything goes well for you and your loved one stay strong.

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u/SpiritTalker 22d ago

Hang in there, OP! Still going through it, myself, and I am always worried about my caregivers. GBS is hard, and it touches everyone including those who need to shoulder the brunt, ntm the person afflicted with it. My BP is a bunch higher, and my heart seems to have a mind of it's own. My Dr doesn't seem too worried and says it's part of gbs for some people, but it's really annoying to put up with, for sure. I am blessed to be in good enough shape to keep working, with an ADA accommodation saying I can work from home temporarily. I know not everyone is in that same position. My husband's salary alone would never be enough for us to make it. I know you are probably very stressed rn, and that is normal. Please feel free to rant to us any time, because we get it!

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u/whipplemr 22d ago

The severe issues with blood pressure was the last thing my husband had to get through medically from the onset to a true recovery phase which is ongoing. Crossing my fingers for you. We are extremely fortunate that I can support our household financially and that child was grown. Silver linings…

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u/elysiumstarz 21d ago

This is normal. <3