10 things I wish I knew about life after Guillain-Barre Syndrome.

When I was diagnosed with Guillain-Barre Syndrome back in 2016 I’d never even heard of it. I asked the doctor to provide me with some information I could read and I was promptly provided with a print out from the internet about the condition. Paralysis, difficulty breathing, loss of bladder function, severe pain, possible death….it was scary reading.

Thankfully I managed to get through my relatively short stay in hospital and was discharged with my walking frame and commode (sorry for the over share) and left to get on with it. No medical support, counselling or physiotherapy. I wrongly assumed that I must not need it.

Fast forward almost 3 years later and I’m still struggling every day not just physically but mentally as well. I have however learnt by trial and error, a few things that I wish I’d known earlier and in a later blog post I’ll share a few products I’ve tried along the way that have helped with daily life.

I must stress that everyone is different and my journey will not be the same as the next person’s. There are lots of cases much worse than my own and some who have fully recovered. I think I fall somewhere in the middle of those two extremes. Some of what I speak about may not be familiar or helpful to you, but I’m sharing it in hope it might help someone who might be struggling and feeling alone as I was.

My new reality:

1. Recovery is a VERY slow process.

When I was in hospital I was given absolutely no information about how long it would take for me to get back to “normal.” I now know that my recovery will take years. I may never get back to the old me and I may have to accept a new normality. This in itself is a huge thing to get your head around. So be kind to yourself and try to be patient (pardon the pun!).

2. I need to plan out my day and spend my time wisely.

Gone are the days when I could get all the housework done on my day off, when I could get up early to go off somewhere for the day or when I could socialise after work instead of going straight home. My energy drains really quickly. Anything physical needs preplanned and spaced out with time to rest in between. My blog post on spoon theory will explain what I mean.

3. My legs cannot be trusted to hold me up for any decent length of time.

Anything that involves standing or walking for a significant amount of time now needs to be carefully considered beforehand. Anything from a lengthy post office queue to a pop concert will require some prior planning. Don’t get me wrong, I’m extremely glad that my legs can hold me up at all but unfortunately there will be times when my legs simply won’t allow me to do the things I’d like to do. At the very least I’ll need to make some adjustments before I can continue. That might mean going to the post office at a time that’s less convenient but less likely to be busy or acquiring seated tickets at a concert and just accepting that some of the time you’ll need to sit down when those around you are standing and blocking your view.

4. I need to be mindful of the weather.

I learnt this the hard way. My body doesn’t like the cold or anything that comes with it. Stay outside too long and the cold temperatures will lock up my joints and it’ll be impossible to walk. Any wind over and above a breeze will mean extra muscle power to walk and that’s something I don’t have. Icy and snowy pavements are definitely a no go with my bambi legs! Thankfully I’ve had Dads cabs working overtime since my diagnosis but the doctor has just declared me fit to start my driving lessons so that should really help.

5. Fatigue is a constant battle.

Nana naps are now a regular part of my day. Sometimes I feel like im 67 not 37! Starting work at 9am now means I have to be home by 2pm and into my bed ready for a nap. Days off work mean I sleep until mid-day and that’s only because my alarm is set to wake me. It feels like my body would literally sleep 24/7.

6. There is no magic pill to make the days pain free.

My first year after diagnosis was spent trying out the numerous medications given to me by my doctor to try and combat the constant searing back pain and fatigue. Sadly they either made no difference at all or made me feel like a walking zombie so attending work was impossible. I made the choice to stop using prescription meds and instead to remain in work and focus on trying more natural remedies such as daily vitamins, heat patches or hot water bottles, Bachs Flower Remedies and over the counter pain killers when needed. The pain and fatigue has stayed with me but unfortunately living alone with a mortgage to pay means being able to work is a necessity.

7. That irritating ringing in my ears isn’t going to go away.

Yep, still there, 3 years on. That annoying ringing like you’ve been listening to loud music for too long. During the day it’s bearable but at nightimes it’s incredibly annoying. It’s just something you learn to live with.

8. I’m going to be super anxious about catching any bugs.

The slightest sign of a sniffle or a tummy upset and I’m avoiding that person like the plague! The smallest of bugs will have me stuck at home for weeks. My immune system can’t be relied upon to save me. I now carry a nasal spray in my bag just in case I need to flush out those germs I might have caught from sitting on the bus or standing too close to a sickly colleague. It’s also an absolute necessity when I’m flying, as are antiseptic wipes to scrub down everything in sight and hand sanitiser gel so I can clean my hands every 2 seconds. You can never be too careful.

9. Brain fog can be super frustrating.

Guillain-Barre Syndrome seems to have killed off more than a few of my brain cells. Sometimes it can be hard to concentrate especially at work. I often forget the word for what I want to say or I’ll use the wrong one. Entering the room and forgetting why I went there, putting water in the kettle but forgetting to switch it on, losing things in strange places around the house are all regular occurrences. I even ran the bath water once and didn’t put the plug in!

10. I am stronger than I think.

I need to tell myself this every day. I’ve survived an incredibly rare and powerful illness. I’m continuing to live my life despite all the daily difficulties. I dealt with my first and (fingers crossed) only stay in hospital, I’ve survived the most excruciating pain I’ve ever felt and I’m continuing to battle the mental demons that come after such a traumatic life experience. We are all stronger than we think.

You can find my other posts about Guillain-Barre syndrome here.

Photo by Aron Visuals on Unsplash the tortoise has become a symbol of Guillain-Barre Syndrome because it signifies the slow progress towards recovery.