Do people successfully return to work following Bacterial Meningitis?

[StrawberryCream]

It is a tough world out there to find work. And I guess for us with residual damage from the meningitis to return to employment is also limited or not possible. I am wondering if many people post Bacterial Meningitis successfully return to work or find alternative employment and successfully manage to stay employed. At the moment I have not worked for a year but dearly hope I will start my job again and be able to cope with it.

[Tiga]

Hi hon, I had VM, so not sure about BM, but after 10 days, had to go back to work, ok hide what i was feeling, and held on to doors and tables LOL, but got there, i found fear was my worst thing xx

[StrawberryCream]

Hi Tiga. Thanks for your reply. I had viral meningitis in the mid 90's, I think, and after a brief period off sick managed to return to a senior nursing post in the NHS without any problems. This time things are very different post Bacterial Meningitis as I have sustained a more extensive brain injury and am now possibly epileptic, plus a year on still have balance and memory problems, difficulties organising myself to do things, understanding information etc etc . I have always been a 'worker' and although I no longer work in the NHS I am currently unsure whether I will be able to return to my job I did before my illness or manage another type of job. Meningitis has certainly turned my life upside down and continues to leave me with a life full of uncertainties.

[Tiga in reply to StrawberryCream]

starwberryCream ( love that name) As you worked in the NHS do you think they may give you a post (part time) to talk to people, and explain what happens after?? I know the place I was in, no one had a clue, it was a daily fight with staff to stop them putting lights on, and making so much noise around me, they would not allow a poster to go on my door to say what I had (which to be honest I am still very angry with)

re Brain injury, balance and memory, is there a way your doc can send you to a Brain consultant, as if it was a car crash (to be honest I bet it feels like you was hit by a car)

I feel for you so much, I think you are been very brave, you said you had VM in 90's and now you have had Bacterial Meningitis was this caught while you was it at work?

But again, I hope your doctor can help you, if not I would advise to move doctors, I was very lucky with mine, he was on the ball after I left the hospital, and helped me with all the damaged the staff caused to me ( collapsed canal veins etc, and the 12 holes lefts in my back after it took 2 days, four doctors and 12 spinal tapes, before they got it right) sorry making this all about me (anger issue me thinks LOL)

please let me know how you get on. And you are a very brave person x

warmest wishes Tiga

[StrawberryCream in reply to Tiga]

Hi Tiga. Thanks so very much for all you helpful suggestions. Fortunately in my area there is a Community Brain Injury Team from which I am seen by a Neuro Psychologist, Physio and more recently the OT. The Physio also referred me to the Neuro Otology Clinic (Balance Clinic). I am also followed up by a Neurologist because of the problem of subclinical fits when I was in a coma now meaning I would be at high risk of epilepsy if I stop the anticonvulsants. Oh and I nearly forgot - I also see a Psychiatrist because of the extemely low moods I have suffered since the Bacterial Meningitis. Fortunately I do have an excellant GP and as you can see my life seems to revolve around appointments. Think I might be quite lucky in my area as I know for a lot of people the follow up is absolutely naf. I don't want to sound ungrateful but it took me quite a while to take up the help on offer as having been a nurse for many years, it was not easy to accept suddenly being the patient! Don't think that is unique to me but is an issue for most in caring professions. Gosh I am sorry to hear you had such an awful awful time in hospital and did not recieve considerate and understanding care. No wonder you feel so distressed and angry. Think that was why I left the NHS after 28 yrs because the increasing documentation that needed to be completed seemed to take over from the good ol' patient care. Take care Tiga.

[Tiga in reply to StrawberryCream]

I do feel for you so much and all you are going threw.

daft if you was in a car crash and had scars, then people would see what you are going threw, it seems all the scares are well hidden.

You are such a trooper, and wish you all the strength you have and will need to get threw all this.

maybe one day there will be a TV show, where people can see the hidden side effects and also the good that comes out (like this blog where people can talk open and honest)

LOL been a nurse for so long (my mom was one) you must have been a right pain in the butt to look after LOL, they say doc and nurses are the worst haaaaa

re Psychiatrist bloody hell they would need at least six months just to hear me moan, but reading about you I will never do that again I am the lucky one, my mood swings and deep moments, I am now going to put down to been 47 and getting old haaaaaaaaaaa, thou thank god I live alone, sometimes even I get bored with my moods haaaaaaaaaa, but my sense of humour gets me threw most things, I think I am funny, not sure if all my mates do

well honey, lets hope this will be the year you KICK ASSS!!!

big hug

Tiga AKA Mandy

[StrawberryCream in reply to Tiga]

Hi Mandy

You know I don't believe that we should judge anyones illness to be better or worse than our own. Yours is equally as valid as mine and you went through a nightmare when you were in hospital. Regardless of how bad the illness was it is the impact on our individual lives which is often awful regardless. You are right though it is the hidden illness particularly because I have not ended up severely physically disabled (although do have physical problems as well as extensive damage to my frontal lobes). Many a time when I have been very low in mood I have wished that I did have a disability that was more obvious to others. But I know for those of you who perhaps have been affected in that way it is an awful thing to be thinking. I hasten to add most of the time I do not think this way and feel thankful that I can still walk and talk and still have all my limbs and digits. It is just when i go to that dark dark place and all the negativity runs riot. I also strive to carry on because I have an absolutely gorgeous 6yr old son whom I feel remarkably lucky to have as I adopted him 2 and a half years ago having fostered him since he was 17 months old. I am an older parent as now 53 yrs old and never dreamed that I would ever have a child of my own. My son is what fuels my determination and strength. And, Yes! - I probably was a right pain up the butt when in hospital and even now for the medical people who follow me up!!

[Tiga in reply to StrawberryCream]

thank you for sharing more about you, WOW your son is very lucky, that he found you, he was put on this earth so you could find him, how cool is that!!!

re your comment: "It is just when I go to that dark dark place and all the negativity runs riot" when I get that I put on the music sound track(everyone dance now) , you can find it on u-tube, something about this song that just makes me smile inside, and not to say get the old hips bogie around, god if anyone saw me, i think they would put me away LOL, this is one of my tags to stop me, going onto a Mandy dark path LOL. LOL you say you are 53, you kow thats the new 35 year old, wish i could do that with my age, but if i did i would be 74 haaaaaaaa mind you some days feel like it haaaaaaaa

so give it a go EVERY ONE DANCE NOW!!!! may be you wonderful son can dance with you

Mandy x

[kel80]

I have been recovering from vm since bge april 2012, i am desperate to get back to work .... but have been unable the head pains are the worse..... i just want to "be normal" go back to work as usual etc i was readmitted last weekend and now back to square one where recovery is concerned ... so i hope there is light at the end of this painful dark tunnel for us all

[Tiga in reply to kel80]

Kel80, you will get there, never give up hon :))))

[StrawberryCream in reply to kel80]

Hi Kel80. Sorry to hear that you were readmitted and that you feel your recovery has been so set back. I can empathize a bit with how you feel as I am in that dark gloomy place at the moment too. I feel like I've gone from a successful professional person and mum to a miserable, tearful, cross, inadequate mum who has also lost her work direction and purpose in life (and financial income and security). If only we could turn the clock back and get our old lives back but I guess we have to go through all the anger and grieving for own old selves and lives to then hopefully (???) start to move on and forge ourselves a new reasonable life which we have to hope will turn out to be equally satisfying and good. Hang in there Kel80. Umm think I need to listen to my own encouragement!!!!

[kel80]

Tiga xxx i hope so xxxxxx

i dont suppose anyone is n the essex area that goes to an event day for vm sufferes ??

[daffodil]

Tiga,Kel and strawberry cream- hang in in there all of you!There is light at the end of the tunnel.As S trawberry cream says post Meningitis may not be the life we hoped for and may for many of us be radically altered,but you do adapt to the physical after effects/injuries over time.The mental and emotional after effects also lessen,,especially with counselling and support from forums,1-2-1 etc.

Like any form of grief we have to go through the stages which are different for everyone - anger,denial,bargaining and there is another which my brain forgets,before the final stage of acceptance.I am nearly 5 yrs post BM and I dont think I am quite at full acceptance,as I still get very frustrated at my limitations.Maybe I am fortunate in that my life hasd been radically changed before Meningitis, when I was struck down with M.E in 2001,so it was then that I had to adjust to loosing my teaching job,fanancialsecurity,self esteem.

One thing I have learned from not being able to work is how much our self esteem is linked with our jobs and also with what we do as parents???We are more than our jobs and if we are parents,just being there is all your kids need.When I mourn myself not being able to do what I want with my kids -drive them about,walk with them,even prepare meals,I just remember my two dear pals who have passed away through cancer or the many who loose their fight with Meningitis.

You have to grieve what you have lost,but take it from someone who has been in your dark places also( at several points I wished I hadnt lived as living like this is so very hard,especailly since I had very little empathy from my husband and our marriage has fallen apart.) as the months and years pass the emotional burden will lessen.It may never completely go, even when folk die you always will mourn and be sad on birthdays,anniversaries etc-but it does get better.

Depression,anxiety are also very normal results of brain trauma,so perhaps if you feel its unbearable then antidepressants might help -though I tend to think they just cover up,what needs to be dealt with and confronted.

Reading these posts ,my heart goes out to you as I have been there.It makes me realises though that I have come a long way since Jan 2008,when the doctors said I may not make it through the night.You are all doing so well-to have confided your worries,fears through this forum and for contacting the MT.Even if we feel totally alone in our sufferings we can confide in others and can also hopefully get the right specialist help -though this seems a lottery as to whrer you live.

Strawberry cream -I agree with Tiga -your gp should send you for further tests ,though they will often delay saying the effects are normal unless you push.I was a whole year on anti nausea/anti vertigo tablets before my GP sent me to a balance specialist,3 yerars before I was sent to a neurologist re migraines.

[StrawberryCream in reply to daffodil]

Hi Daffodil. Have replied to you as a Blogg as having posted a question I am now getting rather confused as to what I've written, what other have replied and who I have responded too!!!!

[daffodil in reply to StrawberryCream]

Wow -thanks for blog post -I feel humbled to have been helpful!I have exactlky same problem,especially whern really fatrigued -this is not the easiest website/forum to navigate.I am same in that Im sure Ive repeated things in answer to diferent questions!No worries as we all need reminding what we have/havent read and there are always new veiwers/posters looking for 1st time.

Yes ,you remembered correctly -have M.E as well,and also endometriosis and osteoporosis!!If I let myself feel too sorry for myself Id just curl up and give up!But my God gave me another chance for my children and to use my experiences for good and through my ramblings on this forum I am now seeing that by being a little further down the post M line,I can pass on a few tips.Even if these are not appropriate for everyone,my empathy for you all is here -compassion and love can conquer so much!

Sorry am too tired to correct spelling!x

[kel80]

its great to hear from everybody ..x more so the ones that have had it a while back to hear how they are coping xxx i agree about the parent part ..x i just dont feel like i am playing any part in my 2 childrens lives at all ..... we was an active family never really stuck indoors ... love theme parks .. legoland was our place to go when bored .. but again its the school holidays and they cant go anywhere , i dont have any help from family they are not taking this illness seriously now i am home from hospital and are to busy with their own lives (even when in hospital they didnt visit in fear of them catching it !!!! lovely !! a !!) i am lucky enough to have some amazing friends one has looked after them and another is taking them out wednesday ... but i feel like a massive faliure to them parents should be there for their children not the other way around !!

[StrawberryCream in reply to kel80]

Hi Kel80. Yes it sure is difficult when you have been used to being an active outdoor person with your children. That was how I was too and like you feel that I am failing as a single parent of a very active 6yr old boy. I expect that like me you find the school holidays exceptionally exhausting although when my son is at school just trying to do a food shop etc tires me incredibly too. It then takes me days to recover. LIke you I do not have the support of my family but as I say 'you can choose your friends and not your family'. I have had amazing support from a few very close, understanding and supportive friends. Although as time has gone on it is me that struggles to accept their help as I don't want to destroy our friendships by making them feel that their kindness is being taken for granted - but that's just my hangup not their issue and because I am used to being in the caring role for others and not on the receiving end. Kel80 what you have to think is that they still have you and there is lots you can do with them being in each others company at home rather than at theme parks etc. It is a different way of life but equally as special.

[legless7397]

I suffered from meningococcal septicaemia in 2006 and as a result lost both legs below the knee I was back at work after 11 months and am still doing the same job back on full time hours, I think a lot depends on the employer but also on the individual's motivation to not let this horrendous disease further impact on our lives

[Jeffery in reply to legless7397]

Inspirational!!!!! Thank you for sharing your success Obviously you are a cup half full person. Kind Regards, Jeffery

[legless7397 in reply to Jeffery]

Definitely cup half full and live each day to the max as have already had a brush with death. Real eye opener going from able bodied to disabled in a flash need to fight for everything and luckily I am strong enough to do this, some are not

[StrawberryCream in reply to legless7397]

Hi. Apologies for taking a while to respond to your message but I took my son away to stay in a Static Caravan nr Hastings for a long weekend and the whole thing of planning, packing, driving, entertaining and looking after a 6 yr old and myself, absolutely exhausted me. But the greatest pleasure was seeing him happy and having oodles of fun for the 1st time in just over a year. I do consider myself to be a determined soul and had expected to be back to work by now as I have always been a worker not a shirker. For 28 yrs I work as a nurse in the NHS up to a Senior Sister Grade but 6 years ago with all the changes that 'come and go around again' I decided to follow my heart and to leave and foster. I was so happy and things were going so well ....but then I was struck by Bacterial Meningitis. To return to fostering I have to be reassessed and pass a medical. At the moment I know I would not be successful because of the issue of epilepsy, balance problems, brain damage and the other residual effects I still significantly suffer from. I still very much hope I will be able to resume being a foster carer but I know I would not be approved yet and don't want to loss that possibility. I have very much lost my direction and purpose in life. my confidence and socialability, my cheerfulness, and struggle to manage organising simple things at home because of the brain injury I have suffered. People tell me it was my determined, fighting spirit that got to survive the Meningitis as it wasn't expected that I would survive. Believe me I am not going to give in to this at all but I am going to give myself a bit more time for recovery.

By the way, I think your amazing to have lost both your lower limbs and to have got back to work in 11 months. We all have our different ways of coping and I guess yours was to get as much in your life back to normal as possible dispite your limb loss. I admire you and highly praise your achievements. Were you lucky to have come through with minimal brain damage or have you suffered in other ways too??

[shrestha12 in reply to StrawberryCream]

Hello StrawberryCream!

I was also affected by BM when i was 5. After 18 years also.... i do have the after effects of it... I have never visited a doc or a neurologist to checkup for my after effects. Do the check up or any test can show... how much brain injury have the BM made on my brain. I meant do the tests of hospitals can show which part of my brain is damaged by BM ?

I do have after effects as Mood Swings, Emotional Instability, Little Clumsiness, Slurry speech. Are these results of the brain injury due to BM ?

Do you also have the problem of fear.... is in common after BM. Coz it is one the many problems.

As you said also have lost my confidence and lost the purpose of my life.

I also get tired very easily and i am nt so confident any thing,,,due to my low mood...I get depreesed very easily ... and it takes a whole lot of time for me to come out from it. My thinking is nt clear... i do have problem managing simple tasks.

What can be done to manage it...or cope with it.

Regards Shrestha!!

[Misslouise in reply to shrestha12]

Omg, I feel exactly the same. It was probably a whole ago you posted that but that's me now. Life is terribly hard and oh so depressing. Sarah x