Meningitis Now

One month into recovery and it’s so overwhelming

Hello,

I have never written on a forum before but right now I feel I need to ‘talk’ to people who will understand . I had Bacterial meningitis admitted to hospital a month ago, two weeks of iv antibiotics and then discharged (by phone) with just being told ‘it will take time for you to feel well again’ no one prepared me for, or even seemed well informed about, the reality of how I now feel.

I naively thought after a month or 6 weeks I would feel ok but I feel no different now to 3 weeks ago and I am coming to the realisation that I may feel like this for some time and it’s very scary.

I feel permanently dizzy, woozy and unbalanced, with headaches and fatigue.

I have four children and I was working and studying before this happened and I feel so far from that life now. All I can manage is to potter around at home very slowly, sitting down and very still often. I can’t do the school run, I can’t drive because the movement of my head makes the dizziness worse and I feel terrible for a long time afterwards. I can’t walk far at all which depresses me as taking my dog for long walks was one of things I loved to do. I just feel stuck. And very lonely with it. My husband works long hours and I have my children to care for and I am trying my best but I am very scared these after effects won’t go and I will have to manage them somehow. There has been no improvement at all.

I then feel terribly guilty for writing this because I am so painfully aware that the outcomes are so much worse for some people and could have been so much worse for me. I should feel lucky. And I am grateful don’t get me wrong. But this has stopped me functioning and living my life and I don’t know where to go with the jumble of feelings and worries I have.

I appreciate now that it is ‘early days’ but it would be wonderful to hear from others who understand

Keely x

37 Replies
oldestnewest

Oh my I feel almost the same some of our symptoms are close I was diagnosed with bacterial meningitis in November of 2017 and I still have a picc line in but no longer do iv antibiotics I take pill antibiotics right now but car rides make me dizzy too. Other things are daily headaches, my hearing has changed one ear I probably have about 50% of my hearing and the other one is probably 75% when before it was 75% in one ear and the other was perfect. In some ways this is my new normal and I keep thinking it could’ve been worse. I mean a lot of people have died of this so we are still here so that is a plus. Other areas I’m affected is my hip has gone numb I pray it is not permanent but I guess it’s good I can still walk. I’m trying to be positive sometimes it’s hard. Did you experience hallucinations at all? I had a few of those... I also did not know who anyone was ... this was probably the scariest experience of my life

I’m glad to know I’m not alone and pray to find someone to speak to about our experiences a lot of people do not understand what we have gone through

2 likes
Reply

Thank you for your reply, am sorry to hear you’ve been having a tough time of it too. It really is hard to get your head round isn’t it.

I didn’t experience any hallucinations but I had horrendous photosensitivity for days and days. I still have some visual disturbances and can’t read for very long. I haven’t yet had a hearing test. But the problems with balance dizziness and headaches are dreadful.

I have been trying to be positive but struggling with that now as each day is the same as the one before.

My fear is that this won’t get better and how on earth will I function again but only time will tell with it I guess.

2 likes
Reply

I understand that I have an ent appointment the beginning of February so I’ll know more than as well as scheduling a surgery to repeat a fracture that let my spinal fluid get to my brain and cause all this terrible stuff to begin with. Yes if I look at my phone to long I get terrible headaches or if I read too much words will start to run together the first few days after coma I could only read if I shut one eye and even then it wasn’t easy.

1 like
Reply

Hi. Just reading your story. I was in an accident and broke my back around 15 yrs ago. I have heard that fluid can leak. How did the find that with you? I was diagnosed with meningitis and encephalitis last May. They couldn’t find the cause. I have a scan at the end of this month but I’ve been told they may not find anything.

I’m getting so much information I’m getting a bit lost.

Reply

I also have extreme photosensitivity and headaches.

Reply

Hey britosborn

I had a lot of horrid hallucinations

The hospital staff after telling them said its called hospital syndrome... a mixture of all the drugs and the people constantly in and out***

2 likes
Reply

I’ve never heard of that but yes it was terrible hallucinations it couldn’t be fun things no it had to be enough to freak me out I can’t tell what was real and what wasn’t.

2 likes
Reply

Hello, This is referring to post viral meningitis, but you never know it could help you. Some of your symptoms are similar.

You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck

2 likes
Reply

Thank you for your message it’s certainly something I will bear in mind. I have had acupuncture in the past and found it to be very beneficial although it was for a different health concern.

So nice to read some positive, best wishes for you and your daughter

1 like
Reply

Hi keely.

I completely understand how you feel. I got vm last May. 6 weeks in hospital and going through this long recovery. I have terrible balance issues and can’t drive, it feels like im on a boat on really rough sea. Like you I have 2 children and my husband works away Monday to Friday. I find I can manage the dizziness at home but when I leave the house it’s really awful. Going for an mri at the end of February, not sure what that will show up? Every day I hope when I wake up it will be better. It’s a lonely recovery and a long one.

One consultant told me I should have turned a corner by now and as determined you are if the wires are broken they can’t be fixed. I’m not thinking that way.

If you want to ask me anything please do.

Joanne

Reply

Hello Joanne,

Your experience sounds very similar to mine and although it’s awful to hear of people struggling I take a strange comfort too that I’m not alone. Because like you say it is a lonely recovery, even people who try to understand just can’t.

Have you found anything that helps you or have you just learnt to do things whilst experiencing the symptoms? Have you noticed any improvements at all?

I do something then have to stop for hours and be still but it’s so hard, the children still need their dinner and all the other usual things. I have a bit of family and friends help sometimes with the children but they can’t be here all the time or for too long. They have to help me with the school run.

I was supposed to have an mri before I left hospital but they discharged me quicker than planned to continue treatment at home (I think they needed the bed) then they discharged me over the phone and it never got done. I have spoken to my GP about that. He prescribed me Stemetil for dizziness but it doesn’t seem to make any difference

Keely

Reply

I have spoken to people about alternative options but unfortunately they won’t do anything until I see my nuro consultant and have my mri. I do the same as you, do things at home and rest in between. It did get easier to manage the dizziness but it is still there constantly. I find it makes me very tired and my patience is very slim.

What gets me is when everyone says that I’m on the right side of my illness and going in the right direction! I know they mean well ... but.

My physiotherapist gave me breathing exercises and told me to relax Mt body, especially my shoulder when I walk. It has helped.

Did you have lumber puncture? I had 4. A person on this site said they found she had spinal fluid leaking. I will let you know how my appointment goes at the end of feb. any medicine they have given me does not work.

take care. Children will be home soon. Hungry creatures 😃.

1 like
Reply

Hello Joconn

I have read from a few people about physio and it’s something I may look into, I will try anything that may help even just a little.

As you say medication doesn’t seem to help.

Thanks again for your replies, it’s pretty lonely this recovery. I kind of feel like everyone else is carrying on with life and I was forced to stop and can’t join in with it anymore, like I’m on the sidelines. I was working a little bit before and studying reflexology my course was due to finish next month but that is all on hold now but it’s so indefinite isn’t it? How long will it b on hold for and will I b able to return to the work I loved doing? Then I think don’t think like that just go one day at a time and that’s all I can do. And things like taking my boys to their clubs and football matches I can’t do, I miss my life, it wasn’t anything fancy and mind blowing but I miss it a lot.

Keely

Reply

My gosh I just continue to get shocked when I read all of your stories and realize I'm not alone. Because I was totally alone for 6 years before I found this group. Don't wish it on anyone but it's good to have an understanding ear.

Reply

Hi what was your sx when u had the meningitis? I have HA for almost a year now , went to many doctors , did mri and showed nothing.

Reply

Your situation sounds familiar, although I had bacterial meningitis the lasting effects are very similar.

I'd strongly recommend getting some counselling.

You can contact meningitis now, its a UK charity tho, so these services only apply if your in the UK

meningitisnow.org/how-we-he...

Reply

Thank you for that suggestion I will definitely look into that,

Hope you are recovering ok

Reply

Thanks its been several years now. I suffered from memory loss, depression, mood swings (which weren't explained by the medics as a known after effect), and flashbacks (similar perhaps to post traumatic stress)

I think the memory loss was the worst, there are still some things I cannot remember.

The counsellor from Meningitis Now was willing to offer support to me and the family members as well if needed. Having someone neutral and confidential l really helped,

1 like
Reply

I can't imagine having to care for four children and suffering through the after effects of meningitis! Don't feel sorry or ashamed for feeling the ways you do. You are not alone! In one way or another those of us who had this terrible disease still suffer. I don't think any of us were prepared to resume life as normal. There are different treatment options. Let your doctor know about balance, hearing & emotional issues. Also this board offers a lot of support which sounds like you really need! Prayers for you

3 likes
Reply

You are so right we pretty much all will have last I g effects from this. But we are still here with our loved ones. I will never be the same and have a hard time reconciling with that but I decide if I can't get back to the way I was that a will create a new me.

Reply

Thank you for your message, it does give some comfort hearing people who understand. It’s all been a lot to get my head round and waking every day feeling the same as the day before is getting harder. Some days I feel more hopeful than others and I guess that must be the same for anyone facing and recovering from a major illness.

1 like
Reply

Hi Keely

Don’t feel guilty at all, everyone is different. And all of the diseases are horrid and leave us all with some sort of impairment now.

From reading that its how i felt for at least 4months after hospital, its hard but keep going! I dont think anyone is ever the same but i think there will come a time where things lessen and you start to manage things, its not a quick fix! Give yourself a break! Talk when you feel like it! Potter about and take your time! Ask for help and support and communicate your feelings! When i came out of hospital i was 7stone, couldnt hear, couldnt sit without pain, couldnt walk, couldnt wash, couldnt potter about, couldnt write, read, draw or watch tv. I too thought i’d never come out of that but now i am at a different stage and a different bunch of frustrations. . .

Always progress! Take care!!! 🤗

1 like
Reply

Thank you for your reply. It sounds like you have had a really difficult time and still are I guess but as you say and as I am realising now, I need to give myself much more time.

Life has changed for me and i need to get my head around it and manage it. Getting through the acute phase of meningitis is one step but what comes next is something else and you’re kind of left on your own to get on with it.

Look after yourself and I hope you continue to move forwards slowly and steadily

Keely

1 like
Reply

Hi Keely

Yea exactly, you think you get over the intial part of coming out of hospital and get better thats depressing and frustrating and then you see another journey you have to be on but as you say you don’t see it till you overcome the step before.

I suppose its just doing the best you can each day at a time***

Reply

Hello

I do feel for you, I had bacterial meninigitis back in August and nearly 5 months on I am not 'me'. I was discharged without any help at all really. I still have balance issues, my head is permanently woozy, I have lost hearing in one ear and have about 50% in the other, it has affected my eye sight and joint problems. I have the same problem as you when driving. I am very tired all the time, but I have found out it is due to my immune system. When I had my follow up appointment I said to the Doctor no one knows what recovery will be and she agreed, we are all different. Keep pushing your Doctors for follow ups with the issues you have, that is the only way I really got any help. Try physiotherapy for your balance, it helps. The Doctor said you have to re-train your brain. I walk everyday (with a stick) but to try and focus. It must be extremely difficult looking after 4 children. I did have hallucinations when I first got the disease, imagined yellow paint running down the wall! Never feel guilty, this is a long hard road we are on, but it will get better, try and stay positive. Keep banging on your Doctors door and insist on help, I wish you luck

Sue

2 likes
Reply

Hello Sue,

Thank you for your reply, your experience sounds very similar to mine indeed. I didn’t have a positive experience from hospital and was clearly discharged home way too soon, GP was very shocked to hear how things were. Once the antibiotics were finally finished and picc line removed they discharged me with no idea or information about how I felt or continue to feel, have had to experience it and research myself. It’s very scary at times to feel like I may never be ‘me’ again.

My balance, the woozy dizziness and headaches, vision and possibly hearing are all affected, tho I am still waiting to have a hearing test.

Did your gp refer you for physio or did you arrange that yourself? I had thought a couple of days ago perhaps I should get a stick to help with my balance when walking I may try that.

Thanks again for sharing your experience I hope you continue to make progress

Keely

Reply

Hi Keely, I still feel like I will never be 'me' but I am staying positive and hopeful! When I went into hospital I could hardly walk with the disease, I just kept thinking I'll be OK tomorrow and should have gone to the hospital earlier! So when I was in hospital I asked for a 'frame' and briefly saw a physiotherapist in hospital, they gave me the frame and a stick to come home with. They did refer me to physio locally but it takes so long. I am fortunate I work and have the benefit of BUPA, but your Doctor should be able to refer you, it will help. I have just got hearing aids and am trying to adjust to them. I cannot believe you have not had a hearing test after all this time.

Try and stay positive, I know its hard, but it does get better. I'm here anytime you want to talk or rant! It does help sometimes.

Best wishes

Sue

Reply

Thank you so much Sue, very kind of you.

And thanks for sharing about physio too, I think I will get myself a stick for now just to help me feel a bit more steady.

I find that mornings are v difficult at the moment, afternoons slightly better but then by the evening my vision is blurry and I feel worse again.

I am taking one day at a time more now rather than trying to push through recovery as that didn’t work at all, of course.

Keely

Reply

Hi there, I had bacterial meningitis April 2017. I was 12 weeks Pregnant at the time. My husband found me on the floor unconscious. My doctors said it would take 6 months to a year to recover from it. Plus, I had a very healthy baby boy during recovery and the exhaustion from a newborn as you know is already a lot! I had major complications after having the baby due to the Lovenox (blood thinner medication). Baby is 2 months and I’m still recovering but healing quickly. I believe because my hematologist took me off the blood thinners right before Christmas. I could not care for myself after being doscharged from Hospital after a ten day stay. My 3.5yr old daughter stayed with my Mom for a month. Transitioning her back home was tough bc she regressed. It was tough on all of us. I had little to no energy. I had family help wash my hair for me, family and friends made us meals. I don’t know what I would have done without them.

My vision in my right eye has been partially blurry since I experienced menigitis. But this week I have noticed my vision improving - still blurry but clearing up a bit. If my blurry vision is the only thing I walked away alive from this horrible infection and with a healthy baby boy. I count my blessings everyday. Be hopeful. It is difficult but you can get through this. And don’t beat yourself up about it. I feel like it will just take time.

Reply

Thank you so much for sharing your story goodness you went through a terrible time and pregnant too I can only imagine how difficult! So pleased to read that you have a healthy baby and you are making progress.

Yes I definitely count my blessings in terms of knowing very well things could have been a lot worse for me. It’s just been a big adjustment to make mentally as much as anything. Accepting my limitations and having to ask for lots of help.

It’s good to hear your vision is hopefully improving that’s positive.

I really hope you continue to get better and congratulations on your new addition to the family

Reply

Oh Keely! How I empathised with your post. This was the first site I ever joined a forum for and it arose out of exactly the same symptoms and emotions that you tell us you are experiencing. I too have four children (all grown up now but I remember so well what it was like when they were younger) and up to February 1 last year when I contracted bacterial meningitis I was sailing happily through life. On a practical front, you WILL get better: but it will take time. I remember a doctor telling me that it was a bit like having a stroke - i.e. a major trauma to your brain - and the only thing that helps with that is REST. Impossible, I hear you say, and I felt just the same, but a year on I still have to rest far more than I ever used to, I go to bed earlier, and I try and listen to my body as like you I am determined to keep improving. The dizziness and headaches were the most distressing thing for me and the thing that gave me almost instant relief were three or four sessions of acupuncture. You need to find a good practicioner but my experience was overwhelmingly positive. One year on I still have slight problems with my eyes and left ear (I have a sort of 'blocked' ear all the time). But best of all my brain is back functioning normally - I can recall information, add up and subtract and I generally no longer feel like I was getting Alzheimers! So be strong, ask for help, explain to your children why mummy is no longer able to do all she used to and be kind to yourself. Rest when you can: the washing will still be there tomorrow whereas an hour's nap will set you up for several hours. You will have so much sympathy and support from this forum. Do use all the help available! Heather

2 likes
Reply

Thank you for your lovely message Heather, it does help to hear from others who have been to this place I am in right now and know there can be improvements hopefully. This forum has been so helpful . I am trying my best but there’s only so much I can do before my body and head forces me to stop at the moment.

Someone else had mentioned acupuncture on here and I did have a course of it before for a different reason of course but it helped me lots then. The lady was brilliant who I went to so in time I may speak to her again. Thank you.

I hope you continue to be well and managing, best wishes

Keely

Reply

I will say the same thing that others have said. The best medicine for your brain is REST! Almost impossible with 4 children at home, but you must insist on help when you can get it. My doc said the first TWO years post diagnosis is when your brain does the most healing. He advised me to get as much rest as possible during those first 2 years. I literally slept between 10-12 hours each night, and took naps during the day if I could. This was after I took early retirement from my job. I went back to work after 6 months off, but was only able to withstand the job environment for an additional 9 months, before I had to quit. My headaches were just too frequent and violent for me to be able to stay employed. Meningitis changes your life, no doubt about it. Be kind to yourself. You've been through a traumatic illness and survived it! Susan

Reply

Honey I know just how you feel. This will take some time. Some do better than others. There is no way to tell how lasting the effects are. My doctors told me that what didn't go away in 4 years would probably stay with me. I can tell you that everything you described is pretty much a mirror of my symptoms. Its been 10 years for me. But don't let that scare you. I've read stories where people come out of it and are able to run marathons. And yes their are others who didn't fare as well as ourselves but that doesn't mean your life hasn't been changed or disrupted. It's so confusing to be aware of all the things you should be doing but either can't or the fatigue makes it feel impossible. I had bacterial meningitis as well. 1 week in icu and 2 weeks additional on the floor. I wasn't able to even step up on a curb afterwards. I experienced fainting spells in public. I say on the sidelines and watched while my husband took walks and otherwise spent time with my grandchildren. They never knew the real me. Only a sick tired and extremely emotional grandma. I haven't been able to cook a meal and clean up aftetwards since that happened. But...I'm walking talking and I get to watch my babies grow up. In so thankful for that. Emotional health is so very key. And in that department I was already suffering from anxiety and major depression. The meningitis only made that more severe and unmanageable. I'm still dizzy all the time. My hearing is impaired but only slightly. In the beginning I didn't recognize most people but that has gotten much better. I've forgotten so much of my life. I have no sense of time. The sequencing is all out of order for me. I'm babbling which is something else I tend to do. I get started and just can't stop. My family pretty much doesn't understand. They think I'm just dwelling needlessly on things. But it is a daily struggle. I was a practici g nurse when this happened to me. Haven't worked since. And yes it is very difficult to find a healthcare professional who know much of anything about this.aBout they are out there. Have one of your doctor's read some of these case histories. That tends to open their eyes some. I will follow your story and please feel free to message me personally if you need an actual human to speak with who understands. Many blessings.

Reply

Hi Keely, as the others have said it's a long waiting game. I had bacterial meningitis and septicaemia last May and spent 1 week in HDU and 2 further weeks on various wards. I've lost all hearing in my right ear and had a seizure. Still suffer from dizziness and fatigue and have had 5 MRI s over the past 8 months and there is still something suspicious showing but no idea what ? But I keep reminding myself how lucky I am to be here and how far I have come, when like you and many others I couldn't walk, dress or wash myself. I am still on a high dose of antibiotics and anti epilepsy tablets, am not allowed to drive yet and still have no idea whether my hearing will return. I've just resigned from a teaching assistant job that I enjoyed and have 3 teenage children and (2 dogs that don't get anything like the walks they used to !). And to add insult to injury half my hair fell out ! My husband and family have been so supportive but I feel that they are all getting as fed up with me lolling around all day, as I am. I think the best advise I was given was to compare yourself on a monthly basis and, even though it maybe a small improvement some months, you will see an improvement. Good luck and be kind to yourself.

Reply

Thank you for your message. Funnily (though not really) you mention it but after I came home from hospital I lost a lot of my hair too it was coming out in bundles. I wondered what was going on. The illness really does affect people in such a myriad of ways doesn’t it. And thanks for the advice of checking in on myself monthly, that seems wise as I was waking each day thinking ‘I feel just the same as yesterday’ and that wasn’t helping my mental well being at all. I still feel that but I have adjusted my original hopes and expectations for recovery.

Sounds like our dogs are in the same boat too, I manage a few hundred metres up the road and back very slowly and my dog looks at me as if to say we’re going back already? But at least I am getting out with him and that is an improvement as I couldn’t have done that a month ago or even two weeks ago.

Hope you continue to feel better slowly and steadily all the best

Keely

Reply

Hello Keely-S, my son Gary's story is on this site, if you read it you know what we went through as a family.however Gary is now doing well. We have had 2 set backs with him, this is because he is a very stubborn, strong young man, who was very impatient an tried to rush his recovery. You must take good care of yourself,doing a little often is better than not being able to do anything. Yes it takes time, but with love an support you will get there. Xx

Reply

You may also like...