i am both comforted to have found this place but also scared about the future

i am 42 and was diagnosed with Viral Meningitis in jan 2012, i spent 6 days in hospital, given anti virals, morphine and antiemetics. when the doctor came to discharge me from hospital he advised that what i'd had was like a bad flu and i'd be ok in a couple of weeks. my own doctor has been less dismissive and said to give it three months. four months later i am still overwhelmingly tired, some days it feels like my bones are soft and i'm wading through treacle. i get horrible dizzy spells and have a near constant head and neck ache. i'm a mum of 2 teenagers, have a smallholding to run and am a student nurse. i want so desperately to feel better i'm getting really down with the constant struggle,on days like today i just cant stop crying, it is good to know i'm not alone but scary that the effects of this may last so long,

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  • Hiya,

    I had bacterial meningitis when I was 5 years old. I am now 22 and still attend regular hospital appointments dealing with the after-effects. Something doctors don't say is that it will effect you for the rest of your life unfortunately. I also get headaches, which if not dealt with soon enough, will swiftly turn into migraines and I had my meningitis 18 years ago.

    Some days it is very hard and is very depressing, but the tiredness will go. If you are unhappy and feel like you are not being listened to by your doctor (a frustration I know all too well) ask to speak to a different doctor if possible. If it is really getting on top of you perhaps ask to be referred to a counselor. Even now I get depressed for days on end dealing with the after-effects and I would find it really comforting to have someone impartial to talk to about it.

    I hope i've been helpful

  • Traceanna, I'm so sorry to hear that you are feeling so poorly and have been victim to this awful disease. I am not going to patronise you by saying " there there , soon be all better " because the truth is that the symptoms can last for years, first thing..rest rest and then more rest. your body needs time to recover, don't be hard on yourself if jobs don't get done. That was the hardest part for me, I had run my own business before I had VM. Now I have to leave things undone, and it still don't come easy. Mood swings ,short term memory loss, tiredness and headaches are all part of the after effects. Some people recover quicker than others, some symptoms remain forever. Don't spend your precious life worrying about what you can't do, concentrate on what you can do, and the fact that you are recovering, and have survived, Medical staff don't seem to know a lot about the after effects of VM, in fact some say there are none. I think you will find some support on here, I know I did when I first posted here. Speak to the Meningitis Trust, they are amazing, knowledgeable and will listen for as long as you need to talk.Or there is also a group on facebook called " I had viral meningitis ", you may find some help there too. I hope you feel better really soon, take care . Polly

  • thank you both, i will ring the meningitis trust when the house is quiet! it has been very hard to ask for help when i've always been so in control and capable and i think that's what people expect of me, so i just feel like i'm letting everyone down all the time. i think thats what i find so depressing. i do have good support at home i just need to adjust my attitude at least for the time being , but thats not easy, life time of habits to break! i think talking to someone independent may really help, thanks again regards T x

  • I had Bacterial meningitus in september 2012, I spent three weeks in hospital. I still find in difficult to talk about and my health issues still continue. I seem to have a constant round of both Hospital and Doctors appointments with still no clues has to when i'm going to be able to walk normaly again, i have more or less constant pains, memory loss and at times depression. The hardest thing i have found is coming to terms with the effect it has on my family and what i put them through and still do. We all laugh about being pushed around in a wheelchair and how they push me so fast i'm either gonna be pushed off the road or get a speeding fine, Everyone has been brilliant. But what i am confidant about is that one day i will be chasing them all around, My Son calls me little Miss Chatterbox, I never shut up and i do love to giggle. What i really wish to say is... Yes we all get the aches and pains, but we still all have the ability to laugh at what life throws at us.

  • Hi, I had VM 10 years ago this year and I periodically write a blog post here for others who have been through the experience of this terrible disease. If you want to have a look they're here: meningitis.healthunlocked.c...

    Like the other respondees I cannot stress enough that you need to listen to your body, if you're tired don't fight as you will just feel worse the next day. Bear in mind also that the vast majority of GP's know absolutely cack all about VM, in the end with mine I had to take the Meningitis Trust leaflet on Viral Meningitis and he finally admitted that he knew absolutely nothing about it. It took some persistence and a lot of nagging because he wanted to send me back to work as 'people are better from meningitis in 3-4 weeks' but I could barely walk let alone go back to work.

    If, and it's a big if, you are left with side effects believe me after a while you get used to them and learn to work around them but for the moment I would suggest you need to rest.

    I wish you all the best in your recovery and don't be afraid to challenge your doctor if they don't understand your symptoms and side effects. Good luck. J

  • thanks jonad have contacted the trust today and even though i feel a bit wrecked by talking about it all out loud for the first time i do feel a bit more positive, it's a relief to be taken seriously and not just feel like it's all in my head.

  • Well done, you'd be amazed the difference it makes to talk to people who actually understand what you're going through and that its quite normal to be feeling the way you do. I remember when I first came out of hospital I just wanted everything to normal straight away, I wanted to just resume my life as before and for it all to fall in to place. I did try but was then rushed back in three days later under blues and twos with collapsed veins and BP/HR dropping to lower levels than they had been when I was first admitted and they didn't I was going to make it through the night.

    As I say, Doctors don't understand unless you spell it out to them, its almost part of the professional mystique they feel they need to maintain that they know more than you do and can therefore dismiss how you're feeling because they think they're right. The MT helpline is brilliant and will make a huge difference in these first few weeks and months as you get used to what has happened. They also understand that you will be angry (not just eternally grateful, see my blog post 'Oh No It's Angry Dad') about what has happened and they take it in their stride.

    I think you've already discovered the I had VM Facebook page which I also contribute to so there's oodles of support if you need it even if it is just to rant. Everyone will know exactly how you're feeling when you do!

  • have just read angry dad :) made me smile, i'm trying so hard to be grateful all the time that i dont feel like i have the right to be fed up. i'm a long distance walker in my spare time hadrians wall, the brecon beacons,coast paths etc and now i'm lucky to do more than a mile and only on good days! it's so frustrating being told rest, take it easy, dont do to much when there's so much i want to get on with!

    the more i think and talk about it maybe i am a bit angry too!

  • I'm glad you enjoyed it. My neurologist said it was my fitness that saved me but it was five long years before I could compete in triathlons again although I did do some short runs and a bit of sailing. I know the frustration well but this year I'm doing a half ironman triathlon this year so if you give it time then more is possible than you may think now. As I've discovered it is OK to be angry and fed up. I'm not a saint and I have feelings as well and as I said in my blog post, am I supposed to be grateful to viral meningitis that it didn't kill me? Well I'm not and there are times when I'm bloody angry!

    Do keep in touch, if you want to message me through the I had VM Facebook page I'm happy to offer any support and help I can as and when you need it.

    Take care. J

  • Hello Traceanna,So sorry to hear you have suffered VM,but glad you have found this site and sources of support on facebook too.I suffered bacterial meningitis and septicaemia in Jan 2008 and have also been left with hidden side effects ,which I have struggled with and still do -worst thing is loss of balance and vertigo 24/7 meaning I need crutches and wheelchair;short and long term memory loss;mood changes(up and down),migraineand visual distortions;fatigue and it now appear damage to thyroid ,adrenal and pituitary glands.I was never given any follow up after the Meningitis as they basically said I was cured as I had survived life support.I look a picture of health now!

    Know you are not alone and make use of all the support you can get,whatever will help you in your journey to recovery and in yopur life ahead.The MT has been a lifeline to me -I contacted the helpline and then they put me in touch with a counsellor and also a 1-2-1 buddy -without the counselling I would have fallen into a deep depression.It was the single most helpful thing I did and am so grateful to the MT -I now volunteer myself as a 1-2-1 buddy,fundraise and spread awareness.If you wanted to get in touch with a 1-2-1 buddy,the trust will match you up with someone of similar age,and similar MT experience.

    Be kind to your body -rest if you feel fatigued or ill,seek help if symptoms dont go away -I got put on migraine preventatives which really have reduced my migarines from daily to very very few.Try to take one day at a time,any more and we just get anxious and this slows recovery.Accept and delegate all you can -you have two teenagers.Work wise - training can be restrted when you are well enough -dont push yourself to rush back,you will only end up worse and possibly with post viral syndrome.

    Your mood will be liable to go up and down -I spent one minute feeling soo lucky to be alive -was not expected to live- then the next wishing Id just slept away as living with theses side effects is so hard to do.Then Id feel guilty that I did livce and am not grateful when other die or are left with horrific side effects.Counselling really helped me talk through al my feelings and gave me permission to grieve my lost abilities,then move on to a chaged lifestyle,but one which is still full of blessings.

    I do wish you all the best and let us know how things go.

  • thanks daffodil, i have been feeling a lot of the same sort of things, very guilty that i'm not more grateful, being constantly told just rest it'll be ok makes me feel really down because it's not ok and i really thought it would be by now.

    i probably have pushed myself to get back to normal as fast as possible partly because i'm a kind of 'walk it off, you'll be fine' sort of person but also because of the attitudes of people/doctors i've met, it's like recovering from flu was the most common response. not that i haven't had some wonderful caring people helping me but after 3 & 1/2 months i just feel like a burden and i feel they expect me to buck up and carry on

    i'm really struggling to see the light at the end of the tunnel, i know it could have been a lot worse but that doesn't stop me being fed up with the limitations i am currently living with and i dont seem to be able to find the silver lining just yet!!

    i have contacted the helpline today and had a good long blub and someones coming to see me thursday, i feel a bit of wreck now to be honest but better in some ways, it's been good to talk about stuff and know that it's ok to be feeling what i'm feeling.

  • I want to reiterate to you please dont push yourself... I really wanted to go back to work in a very busy hospital as a physiotherapist... thankfully my GP said no, I am so glad, whenI did go back (after nine months off) I went back 2 days a week andwas totally wiped out and slept all the time I didnt work. I so wish I hadnt gone back at all, or when I was completely well, as I felt so well back then, and feel now as though I have just a small amout of energy per day and I have to eek it out to make it last. Rest and dont feel a burden, I did and sometimes still do.. but my husband has been marvellous and after all I would have done exactly the same for him, and I am sure so would you. Afterall you are still the same person just injured. Be well and blub too, its healing. I think!!!

  • thanks canada, i have taken another six months off from my nursing course and am feeling the benefit. i cant yet imagine having the energy levels i'm going to need to get through this degree but i get quite depressed thinking about that so i'm just taking it one day at a time. i have now started a very gentle exercise program and am taking antidepresants as i was left with an anxiety disorder. the headaches are really calming down and i'm managing to get a bit more regular sleep so am starting to feel like myself much of the time. there are still bad days but i've joined a movie club and so always have a good movie to watch if i dont feel like doing anything else. things are generally on the up :) thanks for taking the time to write to me regards T x

  • Hi Traceanna, I'm so sorry you are also suffering like this. Your story sounds so similar to mine - reading all your comments in this blog sounded as if I could have written them all!! (If you want to read my story it is a comment in the blog on here "Why does my doctor tell me there are no after effects from viral meningitis?").

    I have just reached the 6 month mark and to be honest my after effects are the same now as they were at the 3 month mark - maybe a slight improvement & I have to believe that this time next month there will be more of an improvement otherwise it will all really get me down. I can completely sympathise with you as I normally just push myself to get over things & I've really tried with this but the more I do so the more it pushes me back. The last week or so I've decided enough is enough and have really tried to push myself then I just realise how far I still have to go and to be honest I just feel worse and have picked up another cold/virus to pull me down further - my immune system has gone to pot! So as hard as it is please listen to your body and don't push it!

    I read that you are a student nurse, I hope they are being sympathetic with you, please don't go back too soon as you'll make yourself worse & your immune system won't be ready for the battering from all the bugs there (which is probably where we caught this from in the first place), I also work in the health service; they are really understanding with me, but I've just gone onto half pay which means things will be a struggle at home as we have 4 children.

    I am glad you have found the Meningitis trust helpful they have been great with me, I too found them when I was 3 & 1/2 months into this. Just as a matter of interest do you live in south wales? as you mentioned walking in the Brecon Beacons (which I used to do before this), and that someone from the trust is coming to see you on thurs, as someone from the m.trust is popping to see me again on thurs after visiting someone else, might just be a coincedence!

    Take care of yourself,

    R x

  • i do, i live north of carmarthen, uni have been great, work is a bit different i was on a community placement most recently and they were ok but it was quite intense so i forced myself on and that's really all i managed as soon as i got home i ate and went to bed, slept all weekend etc.

    i do think i've set myself back quite a bit but i really dont want to miss to much of my training, it all has to be made back at some point, and at my age i dont really feel like i can spare the time!!! logically i know this is probably the wrong attitude, i may have to rethink i guess, we'll have to see how the next couple of months go.

    3 &1/2 months must be melt down time, i wish i'd been given even a leaflet by someone in the medical profession maybe i'd have reigned myself in a bit more but who knows??

    am looking forward to thursday(sort of) as i've felt better, mentally at least, in the last 48 hours just getting all this stuff off my mind. regards t x

  • Hi, I did put 2 + 2 together and made 4 for a change!!

    Ffion (Meningitis trust) is calling to see me on her way back from yours, I also live in Carmarthenshire. She really is lovely and so understanding and supportive, I saw her the once at my 3 1/2 month stage, she's phoned a couple of times to see how I'm doing and it will be good to see her again on Thurs.

    Be careful with work, have you considered defering a year so that you'll be that much stronger next year, the last thing you want or need to do is push yourself too hard, to make yourself worse - easier said than done!! If you fancy a chat you're welcome to message me for my number, as we're in a similar situation and live fairly local to each other, we could compare notes so to speak!

    Regards, Rx

  • Just wonderinghow things are going with you Traceanna?Hope the MT nurse was helpful for you?Bestr wishes,daffodil

  • been a pretty tough time of late, am just trying to take one day at a time. i haven't really been back to MT support, have been a bit withdrawn but have rung again today. how are things with you?

  • i am just getting over vm ... out of hospital 3 weeks now .. when will i start being able to do normal things please ?? the pain is awful head spine lower back eyes dizzy some days is unbearable ..... not sure how long to have off work as cant see when i am going to be able feels like this is never ending the doctrs did say vm is the one they know least about , but that does nt really help us lot ..

  • i'm 4 months post vm and i do function, but in a limited way, i cant imagine getting back to work yet as just the fatigue knocks me out let alone the headaches and dizziness. one day at a time is what i've come to accept, but it's not been easy. dont push yourself to hard at this stage, listen to your body, these things, i know, are easier said than done, all the best t x x

  • If you was in a car crash, and broke every bone in your body, you would still cry, feel tired etc because of the VM, people look normal, so we think we should act and be normal but we are not.

    VM to me is like a re boot on a computer, and the brain cannot work out what is going on, we cry because we are poorly but when we look in the mirror we look ok, so we think what is wrong, if you had a scare, you would not be as upset as you could see what went wrong, out scares are in side of us, so if you wish to cry, then have a bloody good cry

    the neck pain is from the stress we hold inside, which then causes headaches

    I found tub of vic hidden in my bag is a life saver, ok you will sink but this will help with neck pain, and with head aches use ice stick (£1 shop) try and cut out pain killers as in fact they will cause more headaches, when you eat and you get headache make a note, you may have become sensitive to some foods

    so hon., CRY!!!!!!!!!!!! when you want to, its your body saying, look I was ill I am scared

  • thanks tiga, have been doing that a lot lately, will definately try the vics and the ice sticks.

  • Sounds very similar to me. I am 55 yrs old...diagnosed with Viral men. on June 12, had all the symptoms, headache, vomiting etc. Now 4 months later, just so so tired all the time. It takes effort for everything...Walking 10 min exhausts me. I have dizziness when I turn my head from side to side which I have had actually for over a year (before the viral Menig) but has gotten worse. It is 4 months and I was told a couple of weeks I would be as good as new. I also feel out of breath. I am also wondering how long this is going to last.. sometimes I feel that this is going to last forever.

  • hi haywood, i'm 8 months post vm and i think there was a definate turning point at 6 'ish' months for me.

    i still get tired, headaches and dizziness but only when i've over done it and i can feel it coming so make myself stop, i f i dont i also get terrible anxiety symptoms and breathlessness. i'm now taking antidepressant which have helped hugely with the headaches, anxiety and sleeping pattern. my doctor has been amazingly supportive as have my family which certainly helps.

    the 2 week thing has haunted me, i spent many months thinking "i should be ok by now" and beating myself up because i couldn't do more than the basics. i'm still not back up to full speed but i do now have good days that are follwed by good days instead of one good day followed by several bad.

    we're all individuals and seem to mend at different rates but i think the key is to use all the support you can and be kind to yourself, rest when you need to and dont feel guilty about it. if 10 mins walking is too exhausting do five and build on that.

    someone once told me there's nothing so important about tomorrows dust that it needs a clean surface to settle on! i think about that a lot when i'm to tired to push the hoover about, i also have a house rule for the teenagers, whoever makes marks in the dust has to clean it up as they used to like writing in the dust... :D

    i hope you are feeling better soon, you can pm me if you want to chat more i would also recommend call the councillors at the MT...they've been a life saver for me more than once. kind regards t x

  • im really worried about it

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