Really finding things difficult

[Vik3479]

Good morning all . I'm 2 weeks post viral meningitis and in really struggling with after effects . Are the things I'm going to list common is there anything I should worry about I really dont feel like I'm me at at all

Dizziness

Confusion

Very emotional

Pain in neck and head

Awful vivid dreams when I try to sleep

Accidentally peeing myself

Feeling sick

Theres probs more but i just cant think this morn getting myself really stressed about everything . I know i need to be patient but the improvements seem so small

Sorry for going on

Vikki

[Jonad724]

Hi Vikki, firstly you are not going on, many of us on here have had the same experience, me included. In 2002 I had near fatal VM and suffered the same things you are at the moment, not helped by doctors telling me that I would be better in 'two or three weeks'. First and foremost these are all really common after effects of what is a brain under trauma but I do know they can be scary and for me, without the resources we have now, and very little medical help I just wanted to die rather than keep going not knowing when these effects would end.

The good news is they do subside but the rate of recovery is directly linked to how much you listen to your body and rest. It is the most frustrating illness in the world as you go from being fit and healthy (for me that meant competing in triathlons) to someone hitting the reset button on your fitness and suddenly you can't walk (or talk in my case) or even make basic decisions about whether you want a drink or not. Just being asked that cause my brain to go into overload as I tried to process what I was being asked.

You are very early on in your recovery, whilst the initial attack may only last two or three weeks recovery can take a lot longer but please do rest, rest and rest. When you have done resting then rest some more.

There is light at the end of the tunnel, I have done things since VM that I wouldn't have done before hand like 3 half ironman triathlons, 3 half marathons and Long Course Weekend in Wales (one of the toughest three day events in the UK, if not the world). I am also privileged to now be a volunteer community ambassador for Meningitis Now with a specific interest in VM and so if I can help at all please PM me and I will happily share my email address with you. No question is daft and no one on here is going to be concerned about how many questions you ask or how long your post is. I also wrote a number of blog posts about my recovery which might help, just click on my profile and then click on 'posts' if you'd like to read them.

The key thing is though you are not alone and there is help available. Take care, Jonathan

[menchild in reply to Jonad724]

Ha ha Drs told me I wd be ok in a couple weeks! I found this group in hospital. So grateful as I am five months post bacterial meningitis and still not 100% recovered. To add insult to injury I am now losing massive amounts of my hair - an effect of trauma. I have come a long way and I had to learn to stop resisting the need to rest rest rest. I dont look to Drs anymore, have found a good Bowen therapist whi has helped me so much to get my mojo back.

[Flo1108]

Hi Vikki,

You’re definitely not going on, I’m 4 weeks post VM now and I am still not feeling great too. I don’t have all the same symptoms as you but am feeling extremely emotional, with headaches and bad back and leg pains.

I’ve started to see a psychologist this week, which has helped me to start feeling more positive about things. I would totally recommend that. I’ve also been seeing a naturopath who is amazing, she’s listened to me and made me feel like I’m not crazy, as my gps have been a little dismissive. She’s given me a herbal tonic and immune boosting vitamins to help rebuild my immune system.

Rest is 100% the way forward, I unfortunately had to go back to work 1 week after being released from hospital and have really struggled. If you can take as much time as possible. From everything I’ve read that is the constant piece of advice strongly recommended.

Really hope you start to feel better soon!

Emma

[Eli_Acct in reply to Flo1108]

Emma, I did the same... I saw a counselor. I'm 5 months post VM and just now feeling more normal. I've been doing acupuncture for a month.. going to an appointment once a week and she's changed my life around - has helped with pain, neck stiffness, anxiety, fatigue, bowel movements. She's also recommended vitamins to boost my immune system. Would highly recommend if you are able and your doctor's OK it.

[Bellesmom12]

Well, today is my one year anniversary of my diagnosis and my birthday. Yay! I continue to have symptoms but am much better. Rest, positivity and patience are the key. And do NOT let anyone tell you that you should not be feeling unwell. Even doctors. I went back to work after 5 weeks and that was the best thing for me. Took me out of my head. Everyone's symptoms are different. I continue to have intermittent headaches, numb spots and weakness. My memory is not exactly what it was. But, I am soooo much better. This illness is a head game. The symptoms mimic anxiety at times and they make each other worse. The key for me has been to rest a lot, but also keep moving AND talk about everything other than your illness (once you are able to get back out). This site has helped a lot but don't read it ALL the time. God bless you! We ALL know how you feel. You will get better.

Oh, and I couldn't pee. EVERYTHING was off. I couldn't gain weight and I have been chubby all my life and the hair on my legs got thinner. Good news...I have gained 10 pounds in the last month and getting hairy again. Weird? Heck yes! Am I crazy? Hell no!

[Meningoencephalitis2]

Yes it's normal.

Also anxiety is normal.

Remember self talk. Be kind and gentle with yourself.

Recovery is slow. Breath into the peaceful moments and allow yourself time.

[Vmzoster]

Yes, it is unfortunately completely normal. I’m so sorry you have to go through it, but we on this site understand and are going through or went through the same. Recover is VERY up and down and VERY, VERY long...think many months if not even years. Do not think in terms of days or you will get extremely frustrated. Each month, you’ll be able to look back at the previous month and see some improvement maybe even week over week. But days within those weeks and months will be steps forward and backward. I am nearly exactly a year out and I run, dance, snowboard, etc. Things are so much better!!! However, I am NOT the same. I still have unexpected energy crashes, rare but random bought a of anxiety, trouble following fast and complicated conversations or movies, and other odd sequelae. We have to do our best to stay positive and hopeful but we understanding to ourselves when we aren’t. Big hugs to you!!

[Caroline-T]

Hi Vikki, please try not to be frightened by it all as that can only contribute to your stress levels but instead take your demons and work with them, yes listen to your body if it's tired then rest and you may be doing lots of that in the early days/months, it may disrupt your life for a while but persevere and things do get better. I'm nearly 2 years post BM with sepsis and still not at the level I was, so rather than fight to try to do what I used to do only to disappoint myself with failure I have instead learnt to do things that also accommodate my demons, we get along ok now in fact I pretty much take the lead for example, if I don't feel strong enough to complete a domestic task at a given time then I wait until I am strong enough and so I don't give in to the illness and feel sad about it I just change the schedule, hang in there and keep in touch with us all here.