Can you ever return to "normal " life after meningitis?

I had Meningitis & Septicemia in 2008. I was hospitalized for 10 weeks and had 4 months off work. To look at I am "normal" although I suffer with poor balance, significant hearing loss, arthritis and awful depression. I know people have said that sometimes they wish their after effects were more visible so people had some sort of understanding of their life. It's seems an awful thing to say because it must be horrendous to lose a limb or limbs but I feel like that so often. People look at me and think I'm normal but the mental and physical pain never goes away. I don't even moan any more because I can see people don't understand. Why should they? I am tired of saying " I can't do that" and sick of having to think about M whenever I plan to do something. I'm so sick of it that I don't do anything anymore apart from work! I don't see my friends much, I lie to them and pretend I'm busy to get out of doing stuff. The thought of meeting a new partner is inconceivable. I really do feel like " damaged goods". I am desperate to get my like back on track but don't know where to begin. I'm afraid to take the plunge. I feel everyone is looking at me and judging me. If this was one of my friends talking I would be able to point out all the positive stuff, achievements and abilities but I can't do that with myself.

Does it ever really go away?

I would love to hear other people's recovery stories. I'm hoping it might be the kick up the ass I need to get my life back on track!!!!!

12 Replies

oldestnewest
  • What is normal ? I wake up every morning and put on my prosthetic legs, get ready for work and off I go. Outwardly people who do not know me cannot see my disability and that is because I do not let it rule my life,I live as normal a life as possible and do not want nor expect to be treat any differently by either strangers, colleagues or family members. Give yourself a pat on the back and remind yourself how lucky you are to be alive and then start living again.

    Regards

    Mick

  • I had M in 2000. 7 weeks in ICU and 4 weeks on ward. I didnt loose any limbs but did loose my eye sight for aprox 12 months. All fine now and take every day as it comes. I dont work stupid hours any more, life is far more important. The best thing i did was The Inca Trail in Peru for Meningitis Trust in 2009, Raised over £7000 with my mate John. Now done 3 Manchester 10k run for Meningitis Research. Giving a little back really helps, and i feel really good. I cry like a baby alot of the time but im soooooo thankful im here and can see the world every day, rain or shine. the world is mighty fine. WELL DONE YOU for surviving. We need to create a group.

    The "M Beaters" look on facefook i will sort it!!!! if you want to talk let me know (i will cry tho heehee)

  • Hello, I have had Meningitis 6 times now and just recently recovered from the last one, still here and still fighting and what really helps is the people around you. Focus on the future and positive things. I have met a great girl and I am marrying her in 2 weeks because life is too short. I too was very depressed but sought help and gave myself a good kick up the arse. Be positive and think of the good things in life, Meningitis needs to be at the back of your mind not the front, easy to say but difficult to do - but it will come. I hope this helps because I know exactly how you are feeling, there is a great life out there, go and get some !

    kind regards

    Ray

  • you say you have depression that is normal, if you had a car crash etc, it would be the same

    Re more visible yes so true, if we had scares etc people would understand, and yes we all feel bad saying that as people have lost limbs etc, but the fact is that we feel lost, as no one can see what happens in side.

    You say "People look at me and think I'm normal but the mental and physical pain never goes away" this is true, but it will get better, thou at the moment it does not feel that way, my case every one thinks how funny, happy person I am, but I am very good at hiding what's going on, but it seems we only get a small window of HOW ARE YOU?? ARE YOU FEELING BETTER? to nothing, but that is not there fault as they cannot see or feel what we do.

    people will not understand same as if you was blind etc, unless they have had it, they will not

    re not seeing your friends much, if you can try and find one you can talk to, ok easy to say, as I have no one to talk to, so I natter on this site, and try and help others and in that can help myself

    You said "you lie to them and pretend I'm busy to get out of doing stuff" thats ok, for a while, when you are ready you will go out again, do not do guilt, be honest to yourself., say you are not ready, thats ok to do that

    you say "the thought of meeting a new partner is inconceivable" let fate take over from there, do you really want someone while you are not well, take time to heal, there will be someone, just do not rush, it mad, new years eve we say things like I will go on a diet and not smoke, then they wonder why they feel so sad and unhappy by FEB, take baby steps

    you say you feel like " damaged goods". think of yourself as a computer, you was windows XP, then your software went hay wire and now you are Window &, you have not got a clue where all the icons are, how to click on things, where to find software things like that. YOUR brain has been re booted and like all software it takes time to find things.

    To get my like back on track , guess what you have just started by been on this site, and as time goes by, you will be able to help others, learn tricks of the trade, like Vits to help with body and mind, Pain in joints, jar of Vic or peppermint can help

    YOU have taken the plunge just by been on this site.

    you feel everyone is looking at you and judging you, thats your computer brain, telling you things that are not true, when we are tired, low and sad, our mind takes us to dark places, me when my mind does that I put on meat loaf and sing my little heart out, till the brain thinks, what the hell is going on.

    you say If this was one of my friends talking I would be able to point out all the positive stuff, ok in time you will and you will then be able to help others, thou are pain and sadness seems so bad, the more you read on this site the more you can help, do not be drawn into the darkens of others, instead bring them light,

    Does it ever really go away? well no one can answer that, with me, maybe, or maybe I have just re thought how I do things, how to re think, when I feel like I want to rip someone's head off, normal in a queue in a shop, I stop and think, ok do you really want this stuff in the basket, if the answer is no I take great joy putting it down and walking away, if I need it, I say ok hon., count to 10, think calm, pay and go home

    kick up the ass I need to get my life back on track!!!!! OK, if you want a kick up the ass, take each day as it comes, look in each room of your house and think what can I give to charity, if you have pictures on your wall, if they do not make you happy remove them, replace them with photos that do.

    Is there a sent that you like (mines vanilla) buy it, sniff it. learn something new, look on u-tube. each day do one thing that will make you think, I did that, from cleaning window, cleaning your shoes, you may think "WHAT THE HELL IS SHE ON ABOUT" but you must train your brain, that you can make a list and work of it, that you will not give in, you must learn to take control of you life back no matter what you have to go threw.

    I now have 3 problems to deal with after my VM, but I am fighting them one at a time, when I am in pain, I stop, rest then carry on, why should VM stop me, hell if it was a person I would say HAY YOU, get out of my way, you will not stop me, ok some days can be hard, like the aa say one day at the time, why not for same goes for us.

    Its been a year for me, i am freelance so blag a lot how happy and fit i am, and while i do my work i am. You will get there!!!!!!!!!

  • I think the oft repeated advice to 'take one day at a time' is probably best and gradually build up to doing the things you used to enjoy. As someone who recovered from bacterial meningitis more than 20 years ago, on a nice sunny day (when we get them!) I think 'thank God I'm alive to enjoy this, Sorba

  • Hi,You had BM and septicaemia same year as I did.Well done for getting to this site-it will help you a lot.Have you contacted MT helpline -they are wonderful and can give you counselling,1-2-1 buddy which would help with the depression?

    Lots of great posts here already -Tiga you have it in a nutshell thnaks-and you will find different people can contribute different advice.

    I undersatand and have felt all the same things you are feeling-it is all quite normal,but you cant let your mind linger in these dark places.Depression is an awful curse and make you incapapable of moving forward.Mental illness is also much misunderstood and people also tell you to give yourself a shake-but you cant.If you feel your depression is holding you back please seek help as sometimes you do need medication.I am lucky that the counselling helped me get my thoughts sorted and I did come out of a very black and suicidal place- i reckon I should have had medication but I was too to go to doctor!

    People just dont understand unless they have gone through exactly the same thing,and even then we all cope with and react to things differently.Thats why these forums can be more helpful than medical treatment,as we have all met with Meningitis.I know that I still suffer from feeling folks dont understand,but it was same with ME/cfs -try sayi ng you are fatigued and they think a wee rest or a nights sleep will cure it!In the end you just get fed up trying to explain how ill you feel.I know at least if I post here that some folks will empathise and some may even be helped with my warblings!it gives a good feeling to give back and thats a real antidote to depression.

    Try not to think of yourself as a victim.Try to give something back-could you support a charity?I write letters ,also email,and blog here and do 1-2-1 vbuddying for 5 people.This I see as my mission now and my way of getting support and also giving some too.

    My main piece of "wisdom" comes from my Gran who always said,howver bad you think your situation is,always looks for the blessings.I know it is sometimes easier to say that than to apply ,but hey you survived M,you are here in this life,Im sure you have family,friends,a home,you are able to work(even if you struggle).Meningitis robbed me of my ability to stand up and walk(bal;ance damage also) ,as well as many inmvisible but disabling symptoms -loss short term and some long term memory,migraines,visual distortions, unsatble moods,aches and pains ,but I try to make the best of what I have now.In a way Im less altered as I have had ME/CFS for 10 years,so was already bed and housebound.I try to improve what I can -see my blogs on memory problems after meningitis.The rest I have to accept that this is me now.It isnt easy as we all must grieve for our lost abilities,but remember we are more than out abilities-we are human souls and we are loved by God for that -even if you dont have a faith,it helps to know that.

    My story is on MT main website ,under Gillian's story if you want to read it.You will see that I have come a long way since then

    Does it ever go away - no I dont think it will,but you will,with time adjust to the new you.I would be lovely to hear of folks who really have made full recovery,but from all the posts here it doesnt seem that way?So just hang in there and take one day at a time,like sorba says.

  • Thank you all so much for taking the time to reply to me. It helps knowing that its OK to feel like this. Even writing my question, I felt like I was being self indulgent and self absorbed in my misery.

    It is definitely true that other people cannot really understand and it's been comforting to hear from fellow survivors.

    I have been in touch with the MT for some time now and this site was recommended. It's taken months to pluck up the courage to post something! I'm glad I did.

    There seems to be a common theme to the replies..to help others/ raise money for the Trust. I have already done this a few times and it does feel good to give something back. Maybe one day I will be strong enough to give others emotional support too. At this time I need to get myself emotionally better.I drank heavily for 4 years to block everything out. I have realised that the booze didn't help and just made things worse. I now take antidepressants and sleeping tablets. I have also had CBT and counselling. I think, ultimately, it's got to come from within yourself. I really admire Mick's attitude to things....that's what I am striving for.

    You are all so brave....Your stories are all so inspiring. I hope you all continue to fight and take comfort from other people on here. I will definitely keep reading on.

    Best wishes for your wedding Ray...hope you have a wonderful day!

    Thanks again

  • I have just read both of your messages and i would just like to say 'ditto'. What you write is so very similar to what happened to me when I had bacterial meningitis in May 2011 and it could be me writing all the things that you now struggle with and experience with people not understanding, social isolation, depressed mood, fear for the future and how you fit now (or don;t). It is encouraging to read the responses from people who have managed to get themselves to a good place further down the line but we all have to go that journey at our own pace. We are all individuals and the impact is on us and our own lives, and so comparing one with another, is not a good thing to do. You have to go through a bereavement process for the old you til you hopefully reach acceptance of the post Meningitis 'new you'. It is a tremendously hard journey and will take each of us different amounts of time. Some cope by getting 'back to as near as normal as they can as soon as possible'. For others it is not so easy as there can be many hurdles to get over along the way. Not all employers are able to adjust work commitments and the type of work may not be conducive to being able to return to the same job because of the residual brain damage and physical damage/effects. Depression is very common and to remind you I started off by saying 'Ditto' to much of what you are experiencing. We have to give ourselves time as it is a long recovery which may not ever be complete. I get the sense that like me - patience is in short supply when it comes to long recovery which is not helped by other peoples attitude that because you look ok on the outside the invisible damage is disregarded. Some Indulgant and self absorbed is ok it is part of recoving. Take care x.

  • hi,

    i feel your pain, but it wasnt me that had meningitis and septicemia- it was my son when he was 16, he survived thankfully, but he was a complete sportsman before, but his fitness is not the same, his moods are not the same, he is not the same (he is now 18), we have to always think how lucky we were, but the effects are still here, but no one ever understands as he is 'normal' now. I am completely thankful to the team who saved him, but since then, i have had to fight to get tests to make sure he is healthy since. He was born with a disabiltiy, which i have to fight for funding for too. Please keep going, i am totally depressed trying to fight the pct, and fighting for my son, the way i cope is to have 'off days' - i keep going, but there are some days I cant face it anymore, - i just wish my son the best life ever, i cant change what has happened, but one day, i believe he will be happy.

    take care and dont stop trying xxx

  • I cant remember or dont know what normal life is as I had meningitis 3 times at the ages of 3, 4 and 9. I suffered from falling asleep and an inability to concentrate all the way through school and university, at the cinema and on planes, trains, buses and even worse whilst driving. I am currently looking into damage of the adrenal gland. But hey I'm 42 and I have had a great, fulfilling life.

  • I agree with everything you say 100% as I contracted Listeria Meningitis in October 2011, spent 4 months in hospital, nearly died with it in November 2011. Did not lose any limbs but my survival was put down to my fitness. I don't drink or smoke and never have. I am 50, but look 35 and was fitter than men half my age. The disease changed my personality, I am now far more tolerant than I used to be. My hearing has been affected, it is considerably reduced.

    I have increased muscletone in my left arm (bicep and pectorial muscle) I also have capsulitis in my left shoulder. My left hand cannot function as well as it did and the fingers always feel stiff. My left Hip is very weak, affecting my walking. Because of the left hip weakness, my right leg is growing weak through having shouldered most of the hard work for a year.

    My legs and spine ache all the time and I get exhausted after walking just 1 mile where prior to LM I could walk 30 miles with no feeling of fatigue. I feel tired all the time and my wife calls me lazy. Our marriage is on the rocks because of this as she has no idea what pain I feel.

    The NHS is pretty useless and you have to fight to get any treatment at all.

    Mostly I feel angry as I am unable to do very much now.

    The ONLY people who understand are those who have been through it.

  • Great site. A lot janicedennison.com/ moriyamaproductions.com/ of useful information here. I’m sending it to some pals ans also sharing in delicious. millerscandy.com/ And of course, thank you for your effort!

You may also like...