recovering from viral meningitis april 2012 - Meningitis Now

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recovering from viral meningitis april 2012

kel80 profile image
15 Replies

hi there i am recovering from it to xx although i was quite luck in terms of care at whipps cross hospital they ave me an eye mask to help as the blinds was nt the best i was in a week although i think they let me out to early i was thankfull for nice bed and quiet, they did have a sign outside my room so everyone came in with masks etc make me feel like an alien ! there was one awful awful nurse who ignored me "forgot"to turn the machine on for my iv drip so i was 2 hours late getting that dose and she would refuse me painkillers and if i said i was in pain she would say just go to sleep .... so i dreaded her coming in .but there was lots of lovely nurses .. so i was lucky and upon being in hospital an hour i had , had chest x ray ct scan and lumbar puncture , then swabs did they take swabs from your mouth nose and groin ? i have to go back 1st may for tests as they found my white cell count extremley low and something about liver function but they didnt explain ... can i ask how long did it take you to recover ? my head and spine is just so painful i need to recover xx the dizzyness is awful ... moody is not the word !! .. feel so alone , bit like a wimp as feel i should get out there and get on with it but it hurts so much, i have not much support from family they are to busy with their own lives i suppose .

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kel80
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15 Replies
Jonad724 profile image
Jonad724

Hi, I had viral meningitis 10 years ago so can speak from experience. How long does it take to recover is very difficult to say but believe me you are not a wimp as this can be a very serious disease (I know it nearly killed me) and you will need time to get over it. I tried to go back to normal as soon as I came out of hospital and was rushed back in the next day with collapsed veins and heart rate/blood pressure at levels which were critical so do listen to your body and rest! Nothing wimp like about recovering from meningitis, really there's not.

Some people recover quite quickly others take a lot longer and can, like me, be left with a variety of after effects so its a bit of a lottery I'm afraid. The good news is you are definitely not alone. For starters there's the 'I had Viral Meningitis' Facebook group here:

jobserve.com/gb/en/FastTrac...

Then there's the Meningitis Trust Helpline 0808 80 10 388 and there's this community as well. I write a regular blog about my experiences of VM here: meningitis.healthunlocked.c...

All resources designed to help you get through this. I had exactly the same experience with a nurse when I was in hospital who left the TV on all night (despite my protestations that it hurt both my eyes and my head) because she had something to watch when she was doing my 10 minute observations.

I know you don't feel like it now but you should complain to Whipps Cross, they'll have a complaint form on their website, because otherwise they'll continue to get away with it.

If you want to contact me through the Facebook group please do if I can help with anything I will but your best bet is to ring the Meningitis Trust helpline first as they really do know what you're going through and understanding what's going on after VM is half the battle in knowing how to cope after it strikes. I wish you well for your recovery. J

SummerJ profile image
SummerJ

Hi Kel80, So sorry that you are also suffering from this horrible disesase. I had viral meningitis 6 months ago. I totally agree with what Jonad has just said, please contact the Meningitis Trust, they are fantastic and so supportive. You are not a wimp, this is a horrible illness, and one that lots of people (including health professional) don't really understand unless they've had 1st hand experience of it.

I'm sorry you feel so alone and you're not getting much support, as far as recovery is concerned, and from experience the recovery in the first few weeks is quite dramatic (in view of how ill we were when in hosp), so after a few weeks you will feel as though day to day functioning at home is ok, as long as you take plenty of rest/ sit downs when you need to, as the fatigue just seems to carry on and on! Unfortunately full recovery can be very slow, it can take many months (years for some) I'm not fully recovered, far from it and It has been 6 months (feel similar now to what I did at the 3 month mark), and have been left with a number of aftereffects, having said that, recovery is different for everyone so hope yours is quicker! With regards to your headaches and spine pain, they will gradually become less intense most of the time, but I still get daily headaches and my neck/spine is still painful. We can be left with many aftereffects, some are more lucky than others, as for the dizzyness, unfortunately I still suffer from it, it's as though you almost get used to it and learn to cope with it as the norm - sorry probably not what you want to hear. You just need to take time, as hard as it is listen to your body, don't push yourself too hard or you'll set yourself back just remember and keep telling yourself you're recovering from a serious illness. Take care of yourself, Rx

Lemie profile image
Lemie

It's seem like everyone in the same boat!! Doc and nurses need training and educating on v/m....

Traceanna profile image
Traceanna

hi kel, i had VM at the end of jan this year and although the initially i felt awful i did seem to recover at home quite quickly, but i didn't take it seriously enough(probably because of the laid back dismissive attitude of the doc's in hospital who told me "it's just like a bad flu you'll be ok in a couple of weeks") and i have pushed myself too hard in the last month and set myself back a long way!

i've gone back to having a near constant headache and 'swimmy' head and arms and legs that feel like they're moving through treacle, really heavy. i've come to realise the seriousness of what's happened and am now learning to accept that it's a slow steady process and hopefully full recovery will come in time.

give yourself plenty of time and rest, catch up with all the movies you've always wanted to see! only do what you feel you can and listen to your body it's early days yet! contact the trust they are great for support. hope you are feeling stronger soon, regards t x

kel80 profile image
kel80

thankyou for all your replies , x it is nice to hear from people that know how i feel ... i will conact the support group on monday xx i feel like i am going backwards today ... the light is killing my head and eyes ! feellike i am learning to walk again i am so wobbley maybe i over did things yesterday ..x

Traceanna profile image
Traceanna in reply tokel80

i felt a bit like that on wednesday ended up watchin a terrible movie with sunglasses on, eating pineapple and icecream! there really is nothing else for it, if you feel like crap put your feet up and be subjected to the terrors of daytime tv :)

What's your own doctor like, helpful? do you have any effective pain relief? you can ring the meningitis trust any time they are so understanding and helpful, their no is 0808 80 10 388, take care, one day at a time :) x x

lmeale profile image
lmeale

I had the same in 2003 and at the moment im having problems at work due to it leaving me with a low immune systems , so get all the colds and bugs that go around its not good .I feel the HR manager at my place of work thinks im pulling the wool over there eyes !!! But when im ill im ill .I didnt want it and wish i hadnt had it !! Its a awfull illness hope you get on better than me with you recovery

kel80 profile image
kel80

thankyou xx i just feel like maybe something i do each day on a good day makes me worse for the bad day and i go over and over things thinking what did i do ... i have to go back to work at some point sicknote runs out monday from hospital.. but how do i know when i can go back ?? i work as a lsa in special needs school .. i am on pain relief three times a day and have to take this awful tablet twice a day for low vit d found at the same time .. it makes me sick etc .. so i have a good day . then a really bad day driving me mad . feel so bad for my 2 children bless them x

sophiesicknote profile image
sophiesicknote

hi kel. I was diagnosed with VM in Jan 2011 and long story short, after 3 lost months (migraines, fatigue, light/noise hyper sensitivity, panic attacks) I thought i could attempt to return to work...i also work in a school.

This was unsuccessful and set my recovery back as school is the worst environment to be in with VM symptoms and it's after effects ( I still have migraines, headaches, fatigue, tinnitus and still sensitive to noise/light).

I actually returned in September but was not really functioning properly (still had bouts of amnesia) until jan this year. (That's if i really am functioning to the same capacity)

Like Imeale, I have been left with an incredibly low resistance to any bug or illness and, as schools are breeding grounds for viruses, am now on my 5th sick leave since Jan this year.

Do not want to alarm you but want to encourage you to make sure you do not rush back to work. Even if you think you are well, take AT LEAST another month to make sure you are beyond fighting fit because once you are back at work you are going to be exposed to all those colds and viruses that are prevalent in school environments.

My doctor was very sympathetic and supportive so supported my absence. You must go to your doctor and explain your symptoms and profession and i am sure they will support you too.

kel80 profile image
kel80

hi thankyou xx

I did go to my doctor yesterday , she said no way can i go back .. she has signed me off for another month ,,, and said if i can let her know if i can do a hased return and amended duties she may consider allowing me back after the month .. if not she will keep me off :-( i am glad you mentioned the sensitiveness to light and noise as i though t i was being a wimp ... but its awful sometimes unbearable the noise is magnified ... and the light is just so painful .. but then another day i can bear a little light .. but the noise level is always the same its awful ... xx hope you ok soon xx

kel80 profile image
kel80

well .... had a good week .. come friday rapidly turned into a bad weekend .. rushed through a and e pian was so intense and had to go through it all over again , this time they had trouble with doing the lumb punc and put it in over 10 times !!!! painfull ... they thought i have got vm again then bleed on the brain but it turns out to be brain inflammed ... which is apparently quite common for vm sufferers ... ?? and did you get told to stay out of the sun ?? i have now been told to xx

Tupshaw profile image
Tupshaw in reply tokel80

Hello. I know it has six years but did you have bleeding on the brain or just inflammation?

cveks profile image
cveks

I contracted viral meningitis in end of June 2012 , I went to hospital in Greece where I was on vacation and they failed to diagnose me VM and released me from hospital. After 4-5 days I got encephalitis was in Hospital 3 weeks and I am now recovering still of everything. I think my condition was meningoencephalitis which means that I got VM and encephalitis in same time. I am lucky not to have any after effects, except still present pressure/little pain in neck spinal area from time to time. I dont have any headaches, or memory problems I just have this still present from time to time, pressure little pain in neck/back of the head area. Probably this needs lot of time up to 12 months to heal.

cveks profile image
cveks in reply tocveks

Does anyone else have same symptoms as I do ?

qhawe profile image
qhawe

My brother is also in hospital and he has meningitis, thank you so much for advice, indeed I was in need of it. As in my mind there was this thing that tells me that he is about to die soon. At least now I have hope that he will comeback thank you so much.

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