Recovering from hib bacterial meningitis an... - Meningitis Now

Meningitis Now

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Recovering from hib bacterial meningitis and feel like my life has been turned upside down.

Vickybell profile image
6 Replies

I am 29 years old, married and have a 15 month old baby girl. One day at the end of June this year I started to feel extremely dizzy, with a stiff neck and felt very weak. I made an emergency doctors appointment and was told I had an inner ear infection. That night, I woke up with a severe headache, which persisted even after taking painkillers. The next day I called the doctor who prescribed stronger painkillers, however these did not work and I started being sick and could not move from my bed. Thankfully my mum called nhs direct who sent an ambulance to my home.

As soon as I was admitted to hospital, the doctors started me on a course of anti-biotics and within a couple of hours I was given a lumbar puncture (not a pleasant experience!). The results came back that I had bacterial meningitis, however, the microbiologists were struggling to find out what type of meningitis I had.

Due to this, my recovery was very slow and I went downhill more than once as my body was not accepting the treatment given. I was given an MRI scan, CT scan, heart ultrascan, a second lumbar puncture, and so many blood tests that I now feel like a walking pin cushion!

Thankfully, I was lucky enough to recover, and after 3 weeks in hospital, I was finally allowed come and got to see my daughter who I missed more than I could say. A couple of weeks later, I then found out that my meningitis was caused by the hib baterial and that only 30 people a year suffer with this!

Now that I am home and 'well', life is carrying on as normal but I seem to be at a standstill, almost like I'm in a state of shock. I keep going over what has happened, how suddenly I became ill, wondering where on earth I caught this, and then pondering on what could of happened to me if I hadn't received such great care.

There have been many after affects of this illness for me....headaches, pressure in my ears and head on standing, severe anxiety, fatigue and muscle weakness. I am self employed, so not only did I lose earnings, but I am unable to return to working yet and have also lost clients. So financially, things have been very hard.

The saddest part of all of this is the impact that this illness has had on the relationship with my husband. He is a recovering alcoholic and after a week of me being in hospital he unfortunately turned to alcohol for solace. This led to me not seeing him for the next two weeks of being in hospital, and not having his support and comfort. My mum, who had been spending a lot of time with me in hospital now was needed to look after my baby girl which left me alone most of the time, struggling to feed and water myself. Me and my husband are now living apart and I am left to care for our daughter on my own whilst I try to recover.

Life after meningitis is very different to the life I left behind when I caught this, and I'm not really sure how to more forward just yet. What I do know though, is that I have been very lucky and that I am very grateful to be here today.

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Vickybell
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6 Replies
daffodil profile image
daffodil

Hi Vicky - welcome to the forum and well done for getting here.Im sure there will be many folks who will come to your aid.You are in very very early days as far as recovery and from what I read you have a huge amount of stress to cope with,in addition to looking after yourself.You need to get as much help as you can?.Contact your Gp and explain the whole situation and see if you can get some help from social services.Could your mum go alomg with you? If you are like me ( I had bacterial meningitis and septicaemia in jan 2008) you will be still feeling so unwell that you need someone to take over and guide you in ways to get help.I didnt even apply for dla till 7 months later and had no home care as husband didnt do anything and I wasnt even well enough to go to Gp .

Do phone MT helpline -they are fabu;ous and can set you up with a 1-2-1 buddy( I do this now as volunteer) -this can be by phone,email,txt,letter ,whatever suits you.You can also access a nurse home visit,counselling and in some aresa family days.

Also see what benefits you can access -dla,esa? Citizens advice or a charity website called benefits and work are brilliant surces of help.Advocacy charities can also help with filling forms if you are unable to do yourself.

Above all be kind to yourself- I also had a huge need to go over and over what happened,to try to work out why I missed totally 9days of life on life support,then another 3weeks on hospital.the counselling service was great for this and my counsellor listened to the same issues over and over again,but after 12 sessions I was finally able to put it behind me and start to try to recover.I also had a huge family trauma and fallout,which was as bad as the meningitis.You have to be totally selfish here -if you dont get all the support you need,you will find it harder recover enough to look after your wee one.Can you enlist help of parents,relatives,friends?Home start charity could help,maybe give you some respite also?Mines wrer 10 and 13 when I had Meningitis,but reading about those with young and completely dependent kids makes me feel grateful.

There are some truly wonderful,caring and inspirational folks on here,so feel free to share your worries and you'll be amazed at what comes back!

Do let us know how you are doing.sending you and all my other forum regulars a big hug!

Soxy profile image
Soxy

Hi Vickbell

I totally understand how you are feeling at the moment (I was diagnosed with Bacterial Meningitis last June) and it is important for you to try and remember that you are not alone (even if it feels like it at times!)

I am still unable to work, have memory problems, still have severe neck and lower back pain and have struggled financially for the last year. The one thing that I have learnt is that it takes time to recover and that life may not ever be the same as it was before you were ill. It's really hard to accept, but you will get there eventually. Give yourself the time you need to rest and recover - take as slowly as you need too and get as much support as you can.

The meningitis trust are available 24/7 and have a variety of ways in which they can support you - give them a ring. I also am very lucky to have the support of my GP (but it has taken a year for him to listen!).

Post on this forum as much as you like - as Daffodil said there are many kind people on here who understand and care. For me it has really helped me to understand what has happened and to reassure me that I am not on my own.

Sending you a huge hug x

kirklington profile image
kirklington

Hi Vickybell

Just wanted to say I am sorry to hear what has happened to you and parts of your story sound very similar to mine, I have Viral Meningitis April last year and I am still suffering from the after effects My advice would be just to try and take it easy and time can be a good healer, as both the previous comments have said contact the Meningitis Trust they are really good and are still giving me advice on my recovery.

Best of luck..

paul1224 profile image
paul1224

hi Vicky very sorry to read your story

i had bac men in late 2003 i can not say i understand how you feel nobody can

here i am 8 years on deaf in one hear 3% hearing in the orther with very bad tinatus as well

i was unconscious for 4 weeks then had another 12 in hospital

i was told at one stage they thought my balance was so bad would not walk again

but i have worked through a chair and simmer frame and i am now on crutches

so please dont give up just work on your self every day and i am sure in time you will feel better

i have been through everything and still try to stay confident

i am 56 now 48 when it got me

ou have to get better for your little girs sake when u look at her take heart and do it for her

good luck for the future

if u ever want to chat more and one to one please get in touch at least i will understand most dont

all the best

Vickybell profile image
Vickybell

Hi everyone

Thank you so so much for your comments, it means so much that you have taken the time to read my story and reply sharing your own experiences.

I can't believe what you have all gone through, and feel very fortunate that I have relatively mild after effects from this illness. Did you notice the side effects straight away or did they develop over time?

My 4 week check up is Monday, and I am hoping to be given an ear test as I feel my hearing isn't as great as it used to be. Also, I still get headaches and this horrible 'pressure' in my head and ears when I bend or turn my head too quickly. I have also noticed that I struggle to remember things as much now where before I had a great memory - for instance, my mum asked me what I got up to last week, and I couldn't remember a single thing!! Is that normal??? I have A LOT of anxiety at the moment too, but thats very hard to pin down as my homelife is still very much up in the air!

Thank you again, it has really helped to read your stories.

Vicky

tinanash14evr profile image
tinanash14evr

I live in the US I got staph on my leg 3 months ago didn't realize what it was for some time I was putting oil of oregano and tea tree oil on it thought I had it cleared up and then it spread elsewhere and I got it cleaned up and started using triple antibiotic as well and then I started feeling weak and tired rundown and then I started getting pain in my back and then a stiff neck and then last week my ear started hurting and pressure in my head and my eyes I went to the ER2 weeks ago but they didn't take me seriously I went maybe four days ago and got a spinal tap and it came back the technician said borderline so the Dr still is not taking this seriously well the Dr that was in the ER I didn't go to a regular doctor I'd ever see a regular doctor I have been taking many natural products many many and that his what his guiding me through this but I'm getting worse and I must see a doctor that will take this seriously and realize that I do have meningitis and I need to be treated ASAP I looked up on the internet what is prescribed I don't know if I have viral or bacterial but I am going to go well I will have to have somebody go I am unable to drive right now I can barely walk around 2 go to the bathroom and what not I'm on the table to work and I too am self employed and this is hurting my business and I am a single mom my son now live with his father he's 17 I have no family to help me I am all alone I've been laying for 2 days suffering and praying that you this with you mean and I pray for everybody that has this said he'll get better quickly and not have any residualeffects

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