Brain Stem Encephalitis Survivor

[J7580]

I fell very poorly just before the end of last year. With eneumonia and brain stem encephalitis. Thankfully I am back home and on the long road to recovery. I’ve been back home for just over 2 weeks. I’d be grateful to share experiences with someone. As I’ve come to understand brain stem encephalitis is a very rare condition.

[VickyC1982]

Hello!

Welcome to the crap Christmas and New Year club of 2019! I was also on ITU in an induced coma and yesterday was my one month anniversary of being extubated. I had type one respiratory failure and acute respiratory distress syndrome and wasn’t expected to survive my hospital admission which was a shock to find out as I’m only 37.

I don’t know a great deal about brain stem encephalitis but I am a radiographer and know that it is a very serious, life threatening and rare condition. Everyone here will help in any way they can so feel free to share your experiences.

I’m so pleased you are home and on the mend!

Vicky xx

[J7580 in reply to VickyC1982]

Hi Vicky. Seems like we’re both survivors!

My experiences during my recovery read like the aftercare leaflet ICU gave us. Extreme fatigue, memory loss, anxiety etc etc. The most frustrating for me is the swelling and my balance! It feels like my head and throat are in a vice. Because I was bed bound for so long I literally feel like a baby chicken. Add to that the brain stem controls our balance- I’m fighting hard to get my legs back again. My throat is swollen because I was intubated twice and it’s played havoc with my throat and ability to swallow.

Docs tell me I’ve made excellent progress already considering I’m only 2 weeks out. And expect full recovery in 2-3 months time. I’ve gained weight, I can walk if only a little, my husband tells me I’m sounding and looking more like my normal self, I’ve started physio, my swallow is starting to come back. When I write it out like this I think I’ve got nothing to complain about. That said it’s a roller coaster and any ‘bump’ I encounter really upsets me because I don’t have anything to compare it to or at least reassure me it’s normal.

[VickyC1982 in reply to J7580]

I had the same issues with balance, I felt like bambi for a few weeks! I was dragging my feet and using a Zimmer frame to walk. It was one of the worst thing as I felt like my feet weren’t following the commands of my brain. I also had numbness and a weird sensation in my left foot which has gradually improved.

What I really found helped is getting proper rest and starting to get proper nutrition again. It took me a long time to get my appetite back and I refused to eat any hospital food! I did a little bit everyday and when I think about how weak and useless I was when I first got home, I have come along way. I couldn’t even stand up from our bed and walk three steps to the en suite to go to the toilet!

I still struggle with stairs, inclines and I walk like a snail. I often feel dizzy and unbalanced when walking if I’m tired and I think I am guilty of doing too much too soon. My throat has got better over time but it gets worse as the day goes on and I feel like I’m growling a bit by the evening.

I know it’s hard but we just need to give ourselves time to heal. I was told a good six months before I’m back to the same level I was. We have survived a critical illness and my experience has helped me understand why ITU isn’t the place for everyone l. You have to be bloody strong to survive 💪🏼😊

[J7580 in reply to VickyC1982]

My husband has been feeding me lots of good food. I know what you mean about hospital food. Shocking! I was given couple new potatoes and gravy and just told to mash them up. How on earth is that considered good nutrition! Anyway thankfully my husband, Tom, has sorted that out. At first I could only eat puréed foods, now I can eat pretty much as normal but have to be careful with swallowing. It’s better but not back to normal yet.

Much like you I’m one for expecting and doing too much too soon. I think it’s because of the rapid progress I made in just 2 weeks I expected to keep just getting better. Now I know it doesn’t work like that. Today, though I had a decent sleep, my balance is off again. Yesterday I was having a good day until I over exerted myself and had an anxiety attack. Not the first one. Do you have any advice for anxiety attacks?

[VickyC1982 in reply to J7580]

Sorry for the late reply. I’ve had years of panic attacks and I honestly found the best thing is talking about the things the trigger them. It kind of takes the power out of them? I’m reading quite a good book called Overcoming Traumatic Stress by Claudia Herbert which I would recommend. How are you getting on now? X

[J7580 in reply to VickyC1982]

Hi Vicky. I’m doing better. My physical recovery is coming back rapidly. Walked over 2 miles today, my stamina is coming back and I don’t seem to need to nap anymore.

Mentally I’m feeling a bit stronger. Like you said talking about it normalises it, making it a bit easier to take. I haven’t had any ‘bumps’ for 4 days now. In the back of my mind I’m waiting for it...found meditating everyday, first thing, is really helpful along with exercise and getting out of the house.

One thing I have found since venturing out again is what I’m calling social anxiety. Walking in the park, down the street I am fine. But soon as I stop and sit in a cafe or pub, places which are familiar to me, I almost instantly feel anxious and very uneasy.

Has anyone else experienced this ‘social anxiety’?

[VickyC1982 in reply to J7580]

I’ve had social anxiety in the past but not experienced it directly as a result of my ITU admission. I had to push myself to do little trips everyday (walk to the post box, go to the local shop and buy something etc).

The physical side of things has probably been the easiest for me. I’ve been struggling recently after being told I was expected to die during my admission. I don’t think I realised how sick I was XX

[Mijmijkey74 in reply to J7580]

What you said about familiar places & feeling anxious & uneasy I can really relate to. Now just gone 2 years since waking from coma in Jan 2018 & early discharge Feb 2018 I've been ill at ease, uneasy. And still I'm in recovery & frequently unwell too.

[Mijmijkey74 in reply to VickyC1982]

25th of January 2020 was my 2 year anniversary of being extubated. I'm still in recovery of sorts health wise. It's a long road, my walking has gradually got better in the past 4 months, but still can't walk far and get exhausted very quickly.

[VickyC1982 in reply to Mijmijkey74]

Yay another survivor ☺️ I have been extremely lucky with my recovery. In five weeks I’m pretty much back to normal physically. I was like bambi to begin with, no balance, dragging my left foot, numbness. My main issues have been psychological due to the delusions and hallucinations I’ve experienced.

[Mijmijkey74 in reply to VickyC1982]

Bambi I can relate to.

[Sepsur]

Look for the 3 dots at the bottom of your post - right hand side. Edit post to show ‘locked’ - this means only people in this community can read your post. Write what you feel comfortable with - ICU is a bit of a head melt.

[J7580 in reply to Sepsur]

Hi. That’s good to know, thank you. I just joined last night and feel like this is a bit of a lifeline. Besides for the physical symptoms, it’s being able to talk about it which I’d been struggling with. All my friends and family are wonderful but it feels better to be able to share with others who have been through it to.

[Sepsur]

Are you in UK? Do you know about drop-in meetings of icusteps.org ?

[J7580 in reply to Sepsur]

Yes. I’m in Cardiff, Wales. I’ll have a look at the icusteps.org

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Hello J7580, sorry to hear that you have been through a really tough time. But glad to hear that you are home now and I will be with you every step of the way and will help in any way I can.