[hautemess]

18 months ago I got Guillain Barré Syndrome and 3 months ago I had lumbar spinal fusion. The GBS neuropathy and fatigue is constant. My back pain was gone one month after surgery but then I went and moved to a new apartment and my back has been hurting, almost to the level of pre surgery.

I had anxiety and depression before GBS that has come back. The pain and fatigue make it difficult to focus at work. I constantly wonder how long I will have to live with this pain. When can I have my pre GBS life back? I'm trying to remain optimistic but it's hard. I wish I could take a year off of work (and still get paid lol) and focus on my health. I think I'm going to start going back to a chronic pain support group and stop feeling guilty about leaving work for it.

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[jaynedough]

Honestly, I'm amazed that you've been able to do any work. You are such a strong person.

Have you spoken with the doctor who did the surgery? It might be a good idea to get your back checked out. The chronic pain support group sounds good.

Did the doctor who treated the Guillain Barré Syndrome give you any idea about what to expect? Hopefully s/he is doing follow-up appointments with you.

Hopefully you'll get your mojo back soon!

[Skeezyks]

Hello hautemess: The Skeezyks would simply like to send some healing thoughts your way with the hope that you will be able to get your pre-GBS life back... or under any circumstances... at least find deep peace within...

[hautemess]

Originally Posted by jaynedough

Honestly, I'm amazed that you've been able to do any work. You are such a strong person.

Have you spoken with the doctor who did the surgery? It might be a good idea to get your back checked out. The chronic pain support group sounds good.

Did the doctor who treated the Guillain Barré Syndrome give you any idea about what to expect? Hopefully s/he is doing follow-up appointments with you.

Hopefully you'll get your mojo back soon!

Tomorrow is my 3 month follow up with my spine surgeon and next week I see my neurologist. I constantly worry that I'm having a GBS relapse and should I go to the ER (but I don't want to run into that weird Dr I was stationed with in GTMO, lol).

It's difficult having an invisible illness because hey, I managed to put pants on today and drive in to work so I must not be feeling that bad, right?

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[PandorasAquarium]

Hi Hautemess, My grandmother had Guillain barré and it was such a struggle for her. I'm so so sorry that you've faced this difficult disease. You are most definitely a strong person!

I have a slew of "invisible" chronic issues, including back issues (though I've managed to avoid surgery so far). I can't entirely relate or know what all you've been through, but I do understand that pervasive guilt when I can't do the things I want to and meet responsibilities like I used to. I also know that feeling when you just keep wondering if your life will ever be like it was. It's horrible. It's exhausting and frustrating. On top of the health struggles, it can feel so defeating. But you're obviously not defeated yet. You're still trying to work and get better. That's difficult and admirable, and it takes backbone. People tend to empathize when they can see your illness, like a cold that gives you a stuffy nose or a broken bone in a cast. But when you're on your feet, holding yourswlf up with as much dignity as you can muster, they don't see just how much strength and determination that takes. They don't realize how much pain you are in and they often expect you to perform as well as you once did. Then if you tell them that you are in pain or tired, then you're whining. It feels like a no-win.

I admit I still struggle with this, but I resolved to not make excuses or apologies anymore about my physical limitations. If people think I should do more, well, that's too bad for them. I can only do what I can do. I'm working on rebuilding my strength and stamina, but that means some days I make it a little further than the day before and other days I have to call in and just rest and recupe, whether I like it or not. The guilt still hangs on, because that's how I'm wired, but when I start feeling hopeless or 'not enough', I try to remind myself just how strong I really am for all the pain and hard work I've gone thru to be doing as well as I am.

I am still trying to accept that 'chronic' means I'm in this battle for the long haul. This is me now. Not as I was yesterday, but hopefully not as good as I'll be tomorrow when I have a better handle on things.

Anyway, I hope that you can get a lottle something from all that. If nothing else, I hope it assuages your guilt somewhat. Just know that you're my hero. Still working with health issues like you have is SO hard. You are amazing!