Recovery is hard

[KND23]

I am 6 days post hospital trip where I was diagnosed with viral meningitis. I have been on bed rest & attempted to go back to work yesterday. Bad idea, I almost passed out. I am now finding that I get lightheaded even talking to people. If I don’t stop then I feel that I will faint. I also have difficulty processing things. I usually love to read but it’s almost like my brain can’t keep up. I get somewhat confused or overwhelmed when reading. Even writing this post is difficult. Did anyone else have these problems? How do I get myself back on track? I really need to go back to work but I’m exhausted.

[jenny2448]

I am sorry you are going through this hideous disease.

i am 2 years post v encephalitis and meningitis.i am so much better now then when I first came home.

i am still dealing with headaches, a brain that cant take anything stressfu.

I had been an avid reader and just now I have been able to listen to audio books. i am still very weak and have to use a walker. i wear sunglasses all the time when outside.

Sometimes when i have been out and come home I have to lay down . That is for a short nap otherwise I cant talk properly or cope with the headache that worsens the longer I am out. My eyes have changed in focus and i quite often see things that arent there. i have cataracts so i need to get them off.

[MooreJH]

Well done for sharing your story and asking for help. The simple answer is recovery will not happen over night. One thing I have found from this page is that Doctors, although they do an amazing job, do not fully know the impact of the VM. I got told recovery would 2-3 weeks but 22 months later I am still recovering. I would recommend lots and lots of rest. I would also be prepared to take a good amount of time off work too. You’re brain has in a sense had an injury and it will take time. Over the past 2 years I have completely changed my lifestyle and diet to try and help my symptoms. I have since suffered with severe headaches and migraines in the original place where my pain and swelling started on my brain. Certain food contain inflammatory properties and when eaten that can cause the original pain to become inflamed so I follow a very anti-inflammatory food diet as well as taken magnesium and zinc for recovery and a Vitamin B complex. It has taken me 18 months to return to the gym and it’s taken 4 months since going to finally be able to not lose my balance on my treadmill. A lot of people talk about brain fog, which I still have daily. I forget words, sentence structure, I repeat words in a sentence, struggle to process things, I can’t really pay at a till with money anymore because I struggle to add coins and understand the total amount I need to cover the cost, I get extremely tired! I have had to go from full time to part time and even now after working 2 and half days I then I have to spend most of the next day in bed. Listen to your body and give in when you need to. I still suffer with photophobia - flashing Christmas lights are an absolute no go, driving in dark is hard and having an emergency vehicle with flashing lights in the dark I virtually end up closing my eyes because I can’t take the pain of it.

This site a good source of help and even just to read other people’s stories and know that you’re not alone.

Please keep your chin up and listen to your body - it’s been through an ordeal and needs time. Please tell the people around you how you’re feeling and get them to research to so that can understand and support you.

Good luck with your recovery and if you need anything don’t hesitate to post or message.

Heather

[KTebay]

You need to rest, hydrate, sleep and let your brain heal from trauma. It's alarming , but rushing doesn't help, it hinders.

Take it easy for as long as you can...it will pay off

[rohitcontra]

Most important is to take a lot of rest and highly avoid working too early or recovery will get worse. Listen to your body. Returning to work after 6 days is too early. I did that and paid later. Initially rest is the key. Than you can start supplements etc. It will take time but how much nobody can tell.

[Hidden]

I was in your shoes in Aug 18 except I was told I couldn't go back to work until I was evaluated in 2wks post. You are still contagious up to 14 days once your symptoms set in per my doctor. By the way..i still haven't been cleared to work. I have congnitive impairment and speech problems from vm.

It is a long recovery. Don't rush it..you will hurt yourself if you do. I know you gotta make some $ but look.at it this way...You're no good to anybody if you don't heal.

My advice: Rest, Rest, Sleep,.Sleep,.eat healthy.

One day at a time.

[Barbaustralia]

I have all these symptoms though australia system terrible as no diagnosis despite 11 trips to emergency with vertigo and photophobia and eye ache and stiff neck and now migraine original dr tried to say it was a panic attack I now after 3 months every night walk and swim in cool but glare strong light Australian heat horrible how can u get pps to take you seriously and not just say oh agecrekated migraine I had a swelling of my head like after an allergic episode in hospital and walked out different person now all lights so bright and brain can't cope with uneven light and even the moon 🌙 gives me photophobia

[KND23]

Thank you for your words. I have returned to work, I know you all said wait, but I really couldn’t. I am getting better but I do still see a difference in my body and mind. I have been cautious in my return to work. I try not to run around as much (I bartend) and when I have my days off I sleep the majority of the day. I find that my body doesn’t respond to certain food well. I tried to eat French fries and my stomach did not like that. I also have noticed I get very dizzy and nauseous when I am in the car now. It is wild to me how much VM takes from a person. I look forward to feeling back like my normal self, this has not been easy. I pray for everyone else to get better too. This site has been very eye opening & I appreciate the time you guys took to respond to me.

[IRHONDA in reply to KND23]

good luck in your journey ... take it easy take it slow, hopefully it will never return again ...

[Hidden]

Recovery varies from person to person. Overall, it takes time. Listen to your body. Do not push yourself. REST!!!! Your brain needs time to heal.

[IRHONDA in reply to Hidden]

after having it 4 times I find it usually takes around 12/15mths to recover each bout, but theres more than one type of v.m. which I didn't know before ... mine is reoccurring and unfortunately it can kill me if I don't get to hospital quick enough, but each time I have been admitted they work pretty quick on me as it comes on so dam hard and so dam fast .... good luck with yours

[Barbaustralia]

Yep no interest in usual passions awful

[KND23]

Has anyone ever had a issue with meningitis relapse? I have been sick constantly since having it. Always have a cold or the flu. Yesterday I got a bad migraine again like I had when I first got meningitis and it scared me. I find that I am out of it today and absolutely exhausted. This is how I felt the last time.

[IRHONDA in reply to KND23]

yep 4 dam times ... but I swear ive had minny bouts of it as well .. I read in one of the other posts that its good to take magnesium and zinc im going to start doing that now, I don't want another bout as 7/10 days in hospital away from my doggies I cant afford to do ... I am sure I had a mini bout on the 16th Feb, just gone im 100% sure it was I am still trying to get thru it now the terrible head pressure/pain has gone its uncomfortable and I am quite giddy and I get exhausted very quickly, and seem to be picking up everything anyone has around me at the moment, so keep well and no stress is what im trying at the moment and keeping away from the shops unless necessary, hope you never get another bout , but I say that every time I get it goodluck in your journey

[MooreJH in reply to KND23]

I find I have a relapse of symptoms if I’ve been poorly. For instance, over Christmas I had gastroenteritis and following this I had a massive relapse. I was back sleeping for 5 hours during the day, my brain was in a fog, I was dizzy, sever pain in my head where my initial swelling was when I was diagnosed with meningitis. I get like this after I have been ill with a cold or flu or like this in this instance or if I have been doing too much. I moved house this week and the past two days have been a right off with sever migraine and just being zombified and out of it. With regards to your recent post about being ill in the car this is how I am and I get a sense a motion sickness with lots of things now like being on a treadmill or walking round a supermarket and people walking in front of me, around me etc.