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Meningitis Now
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Bacterial meningites

I have my boyfriend in the hospital with bacterial meningites. . The first 13 days he was sedated and on the ventilator.

He is now off intensive care in a ward. But he is still confused and hallucinating . I know it's early days. But these 16 days have been the longest days of my life.

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I had listeria listeria in 2005, and was sedated/induced coma for about 2 weeks.

I initially lost my memory, and couldn't even remember my parents when I regained consciousness .

The worst thing when I was recovering were the mood swings and flashbacks. Thats where the followup care is so important and Meningitis now helped me with counselling. I also spent a short time in a wheelchair (from being in hospital for so long)

Hang in there, give the meningitis trust (Meningitis Now a call) if you need someone neutral to talk to.

meningitisnow.org

Stay strong.

J

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Should have read Listeria meningitis above. typo.

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Thanks. I will.

How are you now? I am really scared thinking about after effects. ..

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I'm.. Not who I used to be, and it does affect everyone differently.

My hospital promised me full rehab, which never happened, just a letter 6 months after discharge from the ICU asking me if I 'wanted to make a followup appointment.

I still have issues with anxiety (but I have another long term med condition that was long before the meningitis).

It was weird tho. Because I spent 10 weeks in hospital, I got a bit institutionalised. First time out with a wheelchair and oxygen and a feral pigeon was the MOST AMAZING THING EVER!

It took me a while to adjust and my parents weren't informed at all about side effects, mood swings, flashbacks.. We only found out about Meningitis Now from the local butcher.

I never got all my memory back, but I'm walking, and functioning.

I made myself a motto to get out of the house everyday, and do something fun once a week!

I didn't really think about it much at the time, but so many people were in touch with my family, and posting on the internet.

You can THIS, is basically my story, told from my gf at the time on a forum:

kidneypatientguide.org.uk/f...

Try to get past each day as it comes. Hopefully your boyfriend won't be in for as long as I was, but its better the doctors keep a close eye on them.

Keep asking the doctors and nurses questions, and posting here.

All things considered, I'm pretty good. Since 2005 I've been to Spain, Germany, Rhodes (twice). Some things I'm still not confident (I've never really got back to driving, despite having a full licence. But I wouldn't have recovered quite so well if it wasn't for friends and family.

Hang in their and remember to look after yourself as well.

J

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Thank you for your words. Could never ever imagined that meningites could be this bad.. wish you all the best .

I will keep posting in here.

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I'm sorry to hear your boyfriend contracted BM. BM is a much more serious illness than viral meningitis. I do hope that he recovers fully. It is good news that he is out of ICU. You can phone meningitis now who will be able to speak with you to give you support and answer any questions you may have. It is also my advice to ask hospital Drs as many questions as you like, if you like. If you don't ask, the Drs won't share much information about your boyfriend. They tend to keep you in the dark. Recovery after hospital release may take some time. Your Boyfriend may not be able to return to his normal job for some time. Good luck.

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Thank for your reply.

The doctors don't tell me anything, they just talk to his mum. I have never ever felt so sad in my life.

I know i need to be strong and I will but somedays it's just too much.

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Has his mum authorised Drs to speak with you also? That may help. (Doesn't mean that his mum will be giving you authority to make medical decisions but that you are kept informed of the progress). It's hard not to feel guilty. My mum had BM in May last year & the out of hours GP sent her home with an ear infection diagnoses. Unfortunately for the timing it was late evening on the return from GP so mum went to sleep. Less than 8 hrs later she was completely paralysed, collapsed on her bedroom floor. She died two days later. As her daughter I feel responsible as I trusted the dr and left her to sleep. I hope you don't mind me saying, your boyfriend has survived and you should be thankful and know that this is not your fault. You will have a chance to talk with him about it when he is better and I am positive he will tell you, you are crazy to be thinking like that because he wouldn't have known how sick he was himself at the time. Be strong, the worst has passed. The road to recovery is slow but will get better day by day.

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Thank you. So sorry about your mum... we always think that if we had done things in other way the outcome would be different. Just thankful that he has survived this. And I am sure that the rest we can deal with it when the time comes. Thanks it's been really helpfull talking with people with similar experiences.

All the best for all of you.

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Hi Pcris

Welcome to this forum which I am sure you will find lots of help whether it is information, support or understanding of what you and your boyfriend are going through. It is I think initially more difficult for those at our bedside if we are in a coma. The induced coma is to help the body put its energy into fighting the nasty illness rather than struggling to keep the vital organs going. Am pleased to hear that after 2 weeks your boyfriend has been brought out of the coma. However, you are right and it is early days with his recovery. The confusion is normal as coming out of a coma is not like they show on TV programmes where people are suddenly completely awake, lucid, comprehending, remembering and chatting freely. Your boyfriends situation is how it usually is having had bacterial meningitis and been in a 2 week coma. It is possible some of the side effects of the medications he will still be on could also be contributing to his confusion. What you need to focus on is the progress he has already made as BM is life threatening and as he is now no longer on ICU he is currently on the road of recovery. However, BM is far more serious than illness such as the flu and even when he is discharged he is still going to be 'recovering' and that is going to take months rather than days or weeks. He will be very fatigued and will need plenty of rest and naps each day's and it is to be expected that any small activity of doing something will exhaust him. He will be physically week from the time in his coma. Everyone's recovery is different and it won't be apparent yet whether or not he is going to have any longer term after effects.

Please do continue to post on here to let us know how things are progressing for your boyfriend and you. Am pleased you have found this site early on because I know myself how isolating it can be because we don't know anyone else who has been through meningitis. Reading others posts, asking questions, the useful ideas and information made me know I wasn't alone and similar experiences happened to others too.

I would also suggest, if you haven't already, that you ring the Meningitis Now helpline as they will send you relevant information about BM but they also are great at understanding and support. They offer other services that can be accessed as well. Give them a call and spill out all your worries, fears and emotions from that roller coaster you are on. The helpline no - 0808 80 10 388 is freephone from landlines and is fre from some mobile networks, 9 a.m - 10 p.m x 365 days. Their website is great too so do take a look.

Best wishes

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Thanks for your reply.

I think you are right. It's really hard to see someone you love so ill.

He was living with me and i feel so guilty that I didn't take him to the doctors early. ...

When I was calling 111 he was so confused that he ran away. He was missing for 2 days. He was found in a ditch unconscious. Doctors said he had 2 infections, pneumonia and meningites.

I really blame myself because he was with hallucinating for 2 days.

I trusted his word that he was fine.. i should have seen that something was really wrong..

I know that if he had treatment earlier maybe things would be different. This is so difficult. ..

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Please don't beat yourself us because in hindsight we can always look back and realize there were some indications that we perhaps could have realized were suggesting something more serious. But at the time they didn't and there would have been many other possible explanations for the symptoms he was experiencing. Even GP's and A&E's will often initially send us home to take paracetamol as it appears to just be flu! Taking on the guilt is not going to help you or your boyfriend and it wasn't your fault. The good thing is that although he ran off in a confused state and was found in a ditch he has now survived the life threatening period and the coma. I can relate to your boyfriends deteriorating condition and confusion and him thinking and saying he was 'fine' because I did that too! I had no awareness of how seriously ill I actually was, refused for an ambulance to be called until I was actually going into unconsciousness and a coma (not sedated) and someone else who knew me and was concerned about me turned up and intervened over the people where I was as recognized I was seriously ill and called an ambulance. That is why BM can often be a killer because it is hard to diagnose initially as many of the initial symptoms are similar to other minor illnesses. Plus not everyone gets the rash that makes meningitis more apparent and perhaps more diagnosable. Even if you had got him to be treated earlier the outcome may not be any different. Some people one here went to GP's or A&E and got sent back home. Others received treatment more quickly but the seriousness of Bacterial Meningitis still resulted in them deteriorating to a serious condition before the medications started to work because treatment doesn't work instantly and investigation have to be done and infections analysed to identify the right antibiotics. The ones started initially, like for me, often have to be changed as not effective agaisnt the diagnosed bug. It is early days and actually he is doing very well so far. You have to take each day at a time because no one, not even the doctors, can predict how he will be and they will usually give the worse case scenario. He is a very lucky man to have you loving and caring about him so much.

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Thanks for your kind words. I guess we never really expect that something like this will happen to us.. so when it does is always try and find a reason. . And there isn't one. Just life. But he is strong and sure is gonna come through it.

You seem like a strong person..wish you all the best.

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Your boyfriend is lucky having you beside him. Often doctors will only talk to the "official" next of kin ie his mother. Hopefully you can get him to say to the medics that he's fine with you having discussions with them. It might need your prompting, but please do try. And then make sure it's written in his notes so you will be kept fully informed. I always put my boyfriend as next of kin, and this is one of the for reasons. Good luck and look after yourself too.

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Thank you for your reply. Yeah , it's difficult when you don't know much. His does keep me updated.. but because he is still hallucinating I don't think doctors will take his word.. I will try tough..

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Hes going to be ok. I had the hallucinations as well for about 4 days. And i had a really high temp for 3 days. The best advice that i can give you is to stay by his side and be strong for him. He still as a good 4 weeks to go before it would be out of his system. Tell him relaxing is the best thing to do and listen to his body and to not over tire his self. I wish you the best of luck and you both will come out stronger together.

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Thank you for your reply. I am going now to see him now. Will updated later.

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My mum was admitted boxing day 2014 with bacterial meningitis. Apart from the sedation the hallucinations were the worst part. She was convinced she was in my friends flat not hospital and said the nurses made everyone climb the walls at night before the hospital folded up. I was very scared she would never be normal again but each day she said more normal things and less wierd stuff. My mum spent 12 weeks in hospital mainly as they found she had no spleen so took longer to fight the infection. She has more or less made a full recovery. She has slight trouble with her leg but mentally back to normal. We laugh about the stuff she used to say. It is a horrendous time but hopefully he will get better each day with you by his side.

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Thank you. He was admitted on the 1st of January. .I was in the hospital just now and he seemed better today. He was not hallucinating and he even had a shower. So I guess it's good news.

Now we just have to wait and see.

All the best for you and your mum.too.

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That sounds really good progress. You just being there will really help him. I am sure he is over the worst. Don't feel guilty either. We thought my mum had the flu. Even when she had a stiff neck. Meningitis never crossed our minds. Even the paramedics didnt know what was wrong when she collapsed. Like you say it always happens to someone else. Try and rest as much as possible.

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Yes I think its good progress. I feel a bit more positive today. I guess time will bring everything. Thank you so much for all your replies, It really helped. Wish a nice week for all of you.

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My dads been through the exact same condition except he was in critical care for 6 weeks, it's been 3 weeks since he has been home. Do send me a private message I will go through everything with you.

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Thank you for replying. Did pm you.

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I feel for your boyfriend. I also contracted bacterial meningitis. I think the confusion and hallucinations are part of it as i had something similar in the early stages but did not get sedated. I just seemed to get better with the medication. It has been 5 months since i was in hospital. I know hard to visualize the future and i had the same thoughts. Best advice is take each day as it comes because every day is different. Try and remain strong for your boyfriend as that is what he needs positive people in his life. Sounds like he is doing really well. My thoughts and prayers are with you all x

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Thank you.

Yes I think time will bring everything.

He is ok, still week and with headaches all the time. But he is strong and I will be here for him every step of the way!

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So sorry to hear about your boyfriend and hope he is recovering well. I had bacterial meningitis 7 years ago now. I am not the same but do ok and nobody else would notice unless they got to know me well. I had a lot of confusion and hallucinating in hospital and some of that was down to the drugs I was given. I still remember them now as they were so vivid. One plus after recovering from meningitis is that you appreciate things in life more. The small but important things we tend to forget when we are rushing around and taking things for granted. You learn to take each day as it comes and realise some days are better than others. I was lucky and had help from Headway and counselling from them. My husband was offered the same but declined although he later wished he had taken them up on that offer.

I do hope things have improved now but everything takes time and patience with this recovery.

Good luck and best wishes

Claire

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Thanks, things are better now. but he is still suffering from memory loss and he has mood swings very often.

I did call meningites now and we both are gonna have counselling. I hope it helps.. I need to learn how to deal with this, and sometimes its really hard

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