I had bacterial meningococcal meningitis and come through it :-)

I had bacterial meningococcal meningitis and come through it :-)

Steve Hill, Ironman to wobbly jelly

On Saturday 11th of February I was admitted to hospital with bacterial meningococcal meningitis.

It all started on the previous Monday 6th of February when I woke up for work. My joints ached and my knees in particular, they were really hurting when I bent down or twisted. I phoned my boss and took time off work. A few days later I booked an appointment with my doctor as the symptoms were not getting better. I never made it to the appointment.

On Saturday, sometime during the afternoon, I had a really bad headache, so bad that I took 2 Paracetamol, and I never take tablets. These didn’t touch the headache and I went to bed about 5pm. I was shivering and the headache was terrible. When my wife, Sarah, came back from shopping, she came to the bedroom to check on me, I was so cold that I had a hot water bottle and even that would not warm me up. The pain was so bad that I could not sleep and was very restless. Sarah was so concerned that she phoned NHS direct.

The NHS direct nurse would not speak to Sarah and would only speak to me, I didn’t have the energy or inclination to speak to them, I was seriously ill. I was asked how bad the pain was from 1 to 10 and I replied 11. I got out of bed and went to the toilet, it was then that Sarah noticed the rash all over my body. She tried the pressure test and the rash was not blanching. The NHS direct nurse called the ambulance immediately and I got dressed.

When the ambulance arrived about 10 minutes later, I was able to walk to the ambulance and sit down on the bed. I remember them doing some tests while I begged for some strong painkillers, but could not have any until the doctors had seen me. That’s where my memory of events stops until my first memory on the 25th of February, some 2 and bit weeks later. My wife tells me that I woke up 2 days before, but I don’t remember although I have a few misty vague memories of her wiping my head with cold wet towels and putting my oxygen mask back on after I kept pulling it off.

My first real memory after waking up was Sarah and my sister-in-law Karen leaning over my hospital bed, accidentally I kissed my sister-in-law instead of my wife first. I had been taken off the ventilator and all the tubes had been removed. Funny enough it was the day Wales played England in the 6 nations and my English father in law had come down to visit me for the game. Some of my family live far away and they spent a lot of time by my hospital bed. I was sort of slumped, sat-up in bed and my father-in law was holding my hand, not only to show support and love, but to stop me pulling the catheter out. I was a confused and irritable wreck who could hardly keep his eyes open. I couldn’t concentrate on the game as my mind kept wandering back to some of the nightmares, dreams or hallucinations that I had during my coma. I was never one for remembering dreams before my illness, but these were so vivid and I can still recall them now. They were the most frightening, un-nerving recollections I have during my coma and involved all my family who visited, my ears must have still been working.

I stayed on the Intensive Care Ward for 3 days after waking. During that time I was confined to bed for the first day or so, not that I had the strength to get out of bed. On day 2 though, I was allowed to get out of bed and sit in a chair for a short while before I returned to bed. A member of the occupational health team came and visited me with a Zimmer frame in hand and I was invited to stand up to use it, That’s where I found that I had no practical use of my legs, I could hardly stand yet alone walk, I was lowered carefully back onto the chair as the last thing I wanted was to be back laying down. I was advised to exercise my legs by picking them up off the floor and holding them there for a few seconds. God it felt good to be upright!.

I looked forward to visiting times and would be clock watching constantly, I couldn’t wait to see my visitors, but after a while with them, I just wished them to leave, I felt absolutely drained. On a few occasions I actually fell asleep while they were there. When they were gone, I wished them back again.

I remember my last day in ITU due to the embarrassment I suffered when I desperately needed to go to the toilet, The toilet facilities believe it or not were a good 70 yards up a public corridor, I tried my best to hold it in but failed miserably, leaving a trail all the way up the corridor. The 2 nurses that held onto me and the Zimmer spent the next 30 minutes sitting me on the toilet and washing me down. Later that evening a nurse came over to me and said they were transferring me to a normal ward as the ITU was full and they needed the bed. I could hardly walk so a porter sat me in a wheelchair and I was transported to Ward 5, a chest ward.

I arrived on the ward about 8pm and was placed in between two gentlemen who were on oxygen machines that whirred and made some strange noises, I could see and hear that they were both struggling to get breath, it was then that I’d remembered that I had given up smoking in January and vowed to myself that I would never start again.

The following morning I awoke and the nurse was there with my medication, 2 paracetemol and a small tablet, I asked what it was for and she replied that “it’s to calm you down and help you relax” I politely refused it as I didn’t want to be drugged up in bed, I wanted to get stronger and get out of the hospital. I had a Zimmer at the bottom of the bed and was told to try to use it as much as possible, I had a water infection from the catheter, so was going back and fore to the toilet very frequently, I had to pass the nursing station every time where the doctors were sitting.

My last day in hospital started with a doctor telling me that they were still trying to transfer me to my local hospital, but due to an outbreak of a superbug, beds were very scarce. I was asked a few questions by the doctor to see if I was still corpus mentis, such as “what year is it?” and “who’s the prime minister”, I got the year wrong, but I still passed apparently. For the next few hours I wandered about ward, back and fore the toilet, waiting for my wife Sarah to turn up and help me shower, I hadn’t had one for nearly 3 weeks and the nurses were too busy. Sarah had sought permission and had it granted, she was allowed to help me shower and was coming at 3.30pm.

I was sat on the edge of my bed at 2pm when the occupational health lady turned up to ask about my needs back home, such as grab rails etc., before we could finish the questionnaire, the doctor asked politely if she could butt in and calmly said the magical words” Steven, we’re going to send you home”. I broke out in floods of tears and thanked her profusely, I couldn’t wait to get home to see my family and to get some peace. She said “ As you are only having paracetemol and I’ve seen you actively moving about, there’s no need to be here”. I grabbed my phone and called Sarah, “don’t bother bringing the big towel in with you, I’m coming home”.

While I waited for Sarah to turn up, I was taken by wheelchair to the physiotherapy section where they checked I could get off a chair myself and could go up and down stairs. I passed, well, I made sure I wasn’t going to fail. While this was going on, Sarah was with the doctor telling her that I couldn’t come home, I wasn’t ready and she hadn’t done the shopping. I joined the meeting to alley some of her fears and to make sure the doctor was not going to change her mind.

Now yes, it was difficult at first, without the modifications to the house, but we got through it, I had baths instead of showers and Sarah along with my daughter Nicola did all the cooking and looking after me. I didn’t have to raise a finger, they wouldn’t let me anyway. You would think that nothing good could come from having Meningitis, but me catching it has brought my family closer together. The support both my family and friends have given me and the rest of my family has been fantastic. The way I see it, is that I slept through the worse part with all the strain and stress falling on everyone else while I was in a coma.

Back to the night I was admitted,

Sarah was told by the doctors shortly after we arrived in the hospital to call our children and tell them that Daddy was very poorly and they should come and see me at the hospital straight away. It was the early hours of the morning, I can’t imagine what Sarah was going through at that time or what the result of that phonecall did to our children. My wife hardly never left my side and helped the hospital staff while I thrashed about on the bed as well as going back and forth to check that the kids were okay while they were waiting for the doctor to speak to them.

Sarah also told me of the time her and my brother was holding me down while the doctors tried to pull the ventilator pipes out. While in a coma, I contracted Pneumonia and it took the doctors 3 attempts to get me off the ventilator but my stats kept dropping each time. If the next time hadn’t been successful, I would have had a Trachioscapy.

Now I have been out of hospital for just over 3 months and am still finding the going tough, the feeling in my fingers is still numb and the dizziness I feel is getting worse and constant. I can’t remember feeling dizzy when I first came out, although at that time, my brain felt like it was swimming in a sea of treacle, as if constantly inebriated. I have an attention span of a gnat ( That’s why this is taking so long ) and my memory is shot to pieces ( ask my Wife ). I have tingling in all my extremities and have trouble picking things up because my thumbs refuse to work. The worse symptom though is the constant feeling of exhaustion, which never seems to go away, I try to push myself off the setee and that’s me knackered for the day. Just as well I have to sit on the edge for a while to let the dizziness subside!!

I sometimes do get frustrated that little things we all take for granted, are now difficult, putting pants on, picking up a teaspoons etc., but one thing I refuse to loose is my sense of humour. I can always forget about dropping spoons etc.!!!

The Meningitis trust have been fantastic and my family and friends immense, just a few questions god, will the dizziness subside and will I ever get my strength back ? ?

23 Replies

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  • So sorry to see how ill you was, I had VM, so have no clue about your illness, but yes keep your sense of humour, and in time many people who have had BMM will blog you, this site will help you understand, also it will give you an outlet to talk,

    Never loose you sense of humour, me due to my VM, I memory gone to shoot, but love watching films as they are new to me LOL.

    memory loss seems to hit everyone, at the end of the day your poor brain was cooked and so not so well. think of a computer, (LOL) use this saying alot on this site, but you have been rebooted, so will take time for the mind to find files, make notes, keep a book by you, make notes on what you want, how you feel.

    I had dizziness, like you, but in time it will go, if you was in a very and car crash you would not pushing to get well so fast, these illness are hidden and will take time, you may have to change your diet and up your Vits B6 is a good one, will help with memory.

    Take each day as it comes, eat well, and take time to heal, but as i said there will more people adding to this that have had what you had, so will be able to help you alot more than i ever could.

    So good luck

    Tiga

  • Thanks Tiga for your kind words, The blog wasn't kinda what I intended to write, but I kept forgetting lol. I'm going to have to write a part 2 because after I left hospital, there was no follow up and if it hadn't been for my wife Sarah, I wouldn't have had my eyes tested, hearing tested or seen the Physiotherapists. Basicaly, they just said goodbye with nothing else. I had to walk out of the hospital with a skick, not even a wheelchair available. I dont want to knock the nurses, they were all fantastic, but the doctors didn't have a clue, we only get one or two a year we were told by a doctor. My discharge papers were incorrect and said viral although my notes confirmed bacterial with a lubar punch. My wife and I only learned of the Pnumonia on the day I left hospital, originally they just said I had a chest infection.

    I hope the dizziness will go just like your's, I have to see the ENT doctor next week following a MRI scan 3 weeks ago (they forgot to give me one in hospital) due to deafness as well as being dizzy.

    I'll definetly try your suggestion of B6 and I do eat well, too well according to my doctor lol.

    Thanks for your kind words again :-)

  • LOL you are as bad as my blog if you take a look at my profile, it seems to go on and on LOL. re doc it took two day, 4 doc, 12 lumbers before they would treat e, so quite loving where I went for the VM.

    Sarah sounds FAB!!!!!, yes there was no follow up with me, but I had to laugh "goodbye" I had my MIR on ear, they said all came ok, thanks good bye, thou my doc said there was nothing showing that was bad, yes I will feel a slight pressure, funny I could have told them that. having my MIR on the base of spine today.

    one thing that has come to mind, have they suggest vertigo to your doc, ok this may sound 100% of the wall, I had a very bad case of Vertigo I was lucky there was a doc in practise that does vertigo manoeuvres, and with in 24hours it had gone, have a look on Google. i only get the add dizzness now.

    OK this is not a doc reply LOL, all that legal stuff but have a look on u-tube Epley Maneuver read peoples comments on symptoms.

    my doc told me it was due to a really tiny bone that had been moved inside my ear.

    also look up on Google vertigo symptoms uk.

    ok it may not help, but then it may, but you would have to go to your doc, please do not try them at home.

    ReB6 try holland and barette store, also pays to get there free in store card, you can get points, and it pays to wait for offers when you need to buy more LOL its a girl thing

    best of luck

    Tiga

  • Hi Stevie,

    Sorry to hear that you've been so poorly but glad you're coming through the other side. I know you had it far worse, I had a severe case of viral meningitis and encephalitis and not bacterial like you. I just had to reply to this comment as like you the follow up is terrible, once you're discharged that's it, when I left hospital I couldn't even walk I was wheeled to the car and my husband had to help me into the house, but as far as the hospital is concerned once you leave you're forgotten, if it wasn't for the Meningitis Trust I don't know what I would have done.

    It is now 8months since I became ill, I still suffer from dizziness, right sided hearing loss, joint paint, numbness of hands and legs which vary in severity depending on how much I do, headaches, fatigue, memory problems etc.. , after all this time I've tried to get back to as close to normal as possible at home as I have children, but I'm still not back in work and nowhere near ready to do my job.

    Anyway what I wanted to say was that it is only next week I see an ENT consultant, and am still waiting for my appointment with a Neuroligist (which I've heard has a 1yr waiting list in my area as our trust hasn't got their own but "loan" one once a month from a neighbouring health trust!); I only got these appointments through my GP and not the hospital I was in.

    In a good way I'm glad that the number of cases of Meningitis is relatively low compared to other illnesses, but that doesn't excuse the Dr's ignorance and lack of understanding regarding this disease and in particular it's after effects & this is why charities such as the Meningitis Trust are so valuable to us.

    Take care,

    Rhiannon

  • Hi, reading your story brings it all back!! My son had the same dreaded illness when he was 15, very similar circumstances.........he is now 27, fully fit, although the recovery period was very gradual, I know this can be depressing.

    He has since done a sky dive for Meningitis Trust and spent a year travelling round the world.

    If it was February this year that you were ill, its still very early days, you must pace yourself, eat nutritious food and don't expect too much too soon.

    Perhaps you or your wife could keep a diary to record your progress, that way you will note all the gradual improvements.

    Congratulations on beating this illness, it is very tough for the whole family. Be kind to yourselves and do the things you like doing.......you will get there.

    Strength to you all,

    S

  • Hi Steve, So sorry to hear youve had bacterial meningitis and septicaemia,I had same back in jAN 2008 and still am suffering from the side effects,particularly dizziness,which is the most disabling symptom as I cant stand up or walk without crutches.I have a wheelchair for distances.

    Do get checked out for the dizziness/vertigo by a neuro otologist(an ent person is no good unless they are trained to look at balance problems)Like you I was just sent home,cured of the bacteria that nearly killed me,but with lots of hidden effects which only showed up later.The dizziness is the only thing that has been with me 24/7 since the week before my Meningitis( the first sign?).In my case I had to ask Gp to refer me.9 months after as was still stuggling with the constant movement feeling inside my head-its like my brain is wobbling and dragging like a jelly.It turn to tru spinning/vertigo when I am overtired or watch any movement.

    I was given lots of tests which excluded menieres diisease, aucostic neuroma and when theses wrer thankfuly normal they just said that the Meningitis must have damaged my inner ears and cerebellum.I was sent to vestibular reahb for a whole year and given daily exercises -mostly eye exercises and trting to stand up against wall without the crutches ,but with eyes closed.After a whole year of trting my migraines(also a result of M ) got even worse to point that I was vomiting when doing the exercises,so was told tp stop.They then concluded that it should have worked by now -the exercises are to allow your brain,ears and muscles (vestibular system) to re callibrate and built new pathways,so you should gradullty feel less dizzy.I was then discharged and was really on a downer as thought was I going to remain this disabled.I pleased again with GP and this time I was sent to a neurologist whois now looking at the possibility that the vertigo is caused by the migraines!I aqm being trialled on various migrainine preventatives,which so far have vastly helped the migraines but made no difference to the vertigo !

    What is important is that you get seen by the appropriate specilaist -either neuro otologist or neurologist or both.It get so annoyed when I see folk writing again and again or getting no followup after Meningitis.There is one chap on here whose wife seems to have had fabulous after care( what we all should have) but it doesnt seem an overstatement to say that most of us seem to be just discharged and left to it.If it hadnt been for the support of Meningitis Trust I dont think Id have got through the last 4 years.

    For the majority of hidden side effects ,they really should improve over time,but we are all individulas.I have other chronic conditions,so Im never sure what conditions cause eg the fatigue,musc;le pain,temperature control isuues,memory loss,migraines ,so all I can do is try to meidcate those things Icant bear( migraines,severe pain0 and try to work on others like memory - see my blog memory problems after Meningitis.My memory is definitely improving since I stsrted my daily braintraining on lumosity.com and Im really encouraged by this,as I had given up hope of evr retraining/studyin g or even remembereing what the last page on a book said!

    Tiga says it really well when she says our brains have been injured and we need to reboot them.This definitely takes time.

    It also helps to try not to wish ourselves back to pre Meningitis days,capabilities.It is hard as we have to grieve for what we have lost,but with the suppoort of family,friends and us folks who have been through it ,you will get through.

    Hang in there and feel free to get back -it is very theraputic to share with othersand youve taken a brave step to go online,

  • I too had Strep Men and Sep I am off balance and cannot walk without crutches or go out with a pusher in my chair. I have 2 cochlear implants for profound deafness and suffer from tinnitus. The body, leg, arms, feet etc have terrible pains and sometimes I am in agony. I Had to retire from work and my husband now looks after me at home as he has retired. The work he does now looking after me is hard and im so lucky to have him. The virus also affected my heart and im now on 19 tablets a day as well as pain patches. Your message really gave me courage to go on and I thank you for that and this website. Take care.

  • Thanks again Sandybeach,RhiannonJ and Tiga, it's nice to know that you're not alone, but I wouldn't wish this on anyone. I was lucky in a way to be strong before the attack, god only knows how weak I am now, and that takes a while to sink in, I have to ask Sarah to open the jars, rather than the other way around now LOL. I know not to keep beating myself up, as it all takes time, unfortunately patience wasn't a vertue bestowed on me, but I'm finding out that I need to learn it.

    I can laugh now when we pass somewhere that's been there for years, and I turn around and comment "Thats new", I can also claim that I have never met my Daughters in-laws, but I had.

    The advice both my wife and I have had from the Meningitis Trust was invaluable, now all the kind souls on here contribute to my wellbeingness. I know there's light at the end of the tunnel, I just have to find a bigger shovel !! Maybe the ENT doctor will have one. :-}

  • Daffodil, I just read your reply and I trully feel for you. I get to see the Ent doctor on Monday. I will be asking him for some referrals. I will be probably changing my GP as he doesn't seem to understand all of my symptoms, my leg pains he puts down to Sciatica, I've had Sciatica and it's not that. He put me on Amnitryptiline for my jumpy legs, it works, but now he wants me to stop taking them. I complained to him several times about my ears before he referred me to the Ent doctor. I have done the excersises at home, but these just seem to make it worse.

    I'll report back next week :-)

  • Hi Stevie, I am 16 months post streptococcal meningitis with an encephalocele ( brain hemorrhage). I am left with deafness in the right ear, vestibular imbalance in both ears and general neuropathy throughout. I was raising 3 grandsons with issues and have had to place 2 of them into foster care as I was unable to look after them. My husband is brain injured as well from a MVA and the 8 year old grandson that we are still raising is also brain injured from an assault at 7 months of age. Basically we are all a family of challenges. We are very close knit and remain in as close a contact as we can with the 2 other boys. I don't know if you are familiar with the serenity prayer, if not look it up. I think it helps to be aware that some things we just cannot change. These things we learn to cope with and work our lives around it focusing on what we can do and recognize what is to the best of our abilities. Does that make sense? If you need to see the specialists and do the testing that is probably best to do that although that can seem to get out of hand as well. I limit myself to 1 Dr's appointment per week for the whole family. I am attending physio still to rebuild my exercise tolerance. I consult with a dietitian to optimize my nutritional intake. I see a therapist to try and maintain my sanity. I try to go to church to tend my soul. All this without wearing out. Best wishes and Kind Regards. Jeffery

  • Well, I saw the ENT doctor on Monday and he confirmed that there was no physical damage to my brain evident on the MRI scan. We discussed my dizziness and I told him that the exercises he gave me previously didn’t work and that I thought they made me worse. He took me to another room and performed some head movements on a bed that made me feel dizzy, He did say what they were called, but I can’t remember.

    He said to sleep on 3 pillows for the next 3 days and when turning over or getting in and out of bed to focus on one spot on the wall. I can still feel myself getting dizzy but through sheer concentration, I manage to keep my eyes open and the worse aspects away somehow. I really hope it works!!

    I’m still waiting for some elevators to put under my corner settee as getting off it is so difficult, I really struggle to push myself off, and it exhausts me. Sarah is going to bring some bricks home in the meantime. Aftercare is defiantly lacking some ware!!

    There are a lot of people left far worse than me after this dreadful disease, such as Jeffery above, I really don’t know how you cope, my heart goes out to you and your family.

  • Im like you stevie off balance and have 2 cochlear implants because im deaf and have got tinnitus also. My doctor says I will never get my balance back so that is something I didnt realise. If I do ill

    let you know. take care.

  • Hi Stevie,

    Sorry to hear that you had such a bad time. I had the same thing 2 yrs ago plus an infected heart valve. It required major surgery. Which caused what the specialists aren't sure. Unlike you I had no symtoms apart from slight back ache. I thought due to gardening. I collapsed. Fortunately, a friend had forgotten something and came back and found me. I didn't remember anything from then and for the 7 weeks ICU. An induced coma, I think. Was in hospital for just over 3 months. The care I had was amazing according to my husband and son. The London Chest Hospital was brilliant! Had a wheelchair, sticks and all the rest when I was discharged but decided they weren't for me.

    I still have large problems with balance. Not dizziness. I don't know how to explain. Had to give up fencing which was a great pity. Also, I have no hearing at all in my left ear [makes driving a problem as I can't hear the engine!!] and nueropathy in my feet. But apart from that I'm back swimming. Made slow progress getting back. I cried t to start with but things keep improving if somewhat very slowly. Still have to crawl about getting off the floor in the gym. I'm determined to back to what I was before.

    All I can say to you all is just keep at it. Life will never be the same but....................!!!!!

  • Well its been 6 weeks since my last appointment with the ENT consultant, I saw a different one this time and he seemed to be a bit more clued up. He confirmed that I had Benign paroxysmal positional vertigo (BPPV) and although the previous consultant said he would refer me to a neurological consultant, he referred me to a special unit that deals with vertigo. I should get an appointment in the next 3 months.

    I'm tamping with both my G.P. and the department of employment. I applied in May for DLA, stating that I could not work due to the vertigo, muscle pain, tiredness and lack of grip,numbness etc and needed help to do the little things like cooking, dressing and getting about. I was refused as the deciding officer said that I was capable of walking 200 yards and in no danger of dizziness amongst other things!!. I contacted my G.P. and had a copy of the letter he sent to the DLA, on it he said I get dizzy and that it was mild to moderate. I haven't seen him for 3 months, I'll be telling him, I get dizzy standing up, laying down, reaching into cupboards and bending down to look into the fridge as well as many other times.

    The only thing my doctor was really interested in when I left hospital, was the fact that my cholesterol level was way too high and he prescribed Astorvastin to bring it down. he also prescribed Amitriptyline for my painful jumpy legs which he put down to Sciatica. over the next couple of months I felt so so tired and irritable but my legs were a fair bit better, I just didn't have the energy to use them.

    I decided one day that it must be the tablets that are making me feel so week, really week. I stopped the Amitriptyline and the pain got far worse, so started taking them again and the pain eased. I then decided to stop the Astorvastin and within 3 or 4 days felt more awake, but still not anywhere near normal, and the pain in my legs is more of a dull ache, like a dead leg with shooting pains every now and again.

    I have even managed to come off the Amitriptyline. I'd rather feel more awake.

    He's not going to be happy when I see him next week, it may even be the last time I see him if he doesn't pull his finger out and treat me seriously!!

  • hi stevie

    Sorry to hear your experience. to be honest you are quite lucky. i hope you must have recorded some progress by now though. reading all your story and conversation has reminded me of my own situation. I had meningitis and septicaemia last October 2011 and 11months on I am still suffering heavily from the after effects. I loss my hearing on both ears and had to get cochlear implant devices. These devices helped to connect me back to the world of sound after 8 months of complete deafness. My left ear was affected so much that even with the cochlear implant, i could not hear anything. the doctor said that my cochlear and auditory nerves were damaged beyond repair. so now i could hear with my right ear with the cochlear implant device but the sound is so robotic. i 've got no option. i have to live with it. I also loss the soles of my feet and 7 toes in both feet. I underwent very traumatic 13 sessions of operations. I underwent feet reconstruction operations on both,where my two thighs were split open and muscles were taken to replace the dead/necrotic tissues. I also loss my skins on both thighs on different skin grafts. I had pericarditis where a hole was created right through my chest to the heart to drain excessive fluids from around my heart sac. I stayed 9 months all together in hospital and rehab only to come back home and realise that my apartment has been broken into by some burglars. They took away all my electronics and bank cards. They took my car key and opened and ransacked my car. I got told by estate agency that runs my building that I would not be allowed back to the building because of health and safety reasons. I was put in care home since I was discharged. All these coupled with the emotional, and psychological effects. The worst perhaps is the fact that I don't have my family around here. So went through all these on my own save a couple of friends who drop in to say hi. I found this site quite helpful cos here you read stories of people who went through same thing as you.

    Your would be fine with time. Fingers cross

  • you could read about my experience on the blog THE DAY MY WORLD STOOD STILL

  • I will read your Blog in a few mins but have to respond first.

    I know I was extremly lucky that my wife called the emergency services when she did, she saved my life. You suffered much more damage than I did, but like you found this site extremly helpful.

    You have suffered in so many ways and my heart goes out to you. One thing I want to do now is to help the Menengitus trust as they have helped myself and wife so much.

    I hope you take care and get over the worse effects, Off to read your story now!

  • I believe I went through a similar situation I contracted meningococcal septicaemia in March 2006 and spent 2 weeks on a ventilator, my outcome was a bit different I lost both legs below the knee, it will take some time to get back to normal, I was able to walk 1 mile in 28 minutes on prosthetic limbs exactly a year to the day of my amputation. 6 years on and I am now back at work full time still have memory issues but apart from that I would say I am back to my pre illness self.

    take each day as it comes and recognise small things that were unachievable a few days/weeks ago are now done without thinking.

    Small steps build up to a level you are happy at.

    Good Luck for the future.

    Mick

  • It's been nearly a year since I contracted this terrible disease I'm not back to 100% but am hovering at about 80%, I was so lucky.

    I have been back to work since the beginning of November, my boss was kind enough to allow a staged return to work. I have to be honest, it's still a struggle everyday,but worth it to get out of the house. I am still tired and feel exhausted 24/7. My dizzy spells of vertigo are now a rare occurrence but still linger to remind me to be careful. I find my deafness to be a problem now, I'm forever asking people to repeat themselves and you can see in their eyes that it can be annoying.

    As I'm now type 2 diabetic and have high blood pressure, I take many tablets daily. some I have refused to take because of the side effects. I.E. Amitriptyline is great for numbing the pains and jumpy sensations in my legs, but knock me out for a few days.

    I caught a bad case of the flu over the new year, my wife say's it was "man-flu", but that's what she thought last year!!. I was frightened when the symptoms got worse by the hour, I couldn't help thinking about what happened nearly a year ago. I had a bad head, fever then freezing cold, every muscle in my body ached. this time though my nose was streaming as well but the headache wasn't as bad. It was a frightening experience though, I kept measuring how bad the headache was on my own pain scale, I didn't want Meningitis again but you cant help thinking, can you!!

    I don't know if this bout of flu was the worst I have ever had or it was a culmination of the flu mixed with the remnants of the Meningitis but I'm so glad I'm better now.

    I'm going to book the anniversary of my illness off work and maybe I'll treat my wife to a couple of day's away, afterall, we both suffered together as she never left my side and has been a constant supply of support. I owe her and the rest of my family so much.

    I have had so much support here, thank you all for your help

    Regards,

    Steve

  • Wow Steve! That's quite a story, very similar to mine, not exact as I don't think any 2cases are alike. It's interesting to hear people talk about the lack of follow up care. I too could not walk without a walker when I left the hospital. They wheeled me out in a wheel chair and my husband Paul (who like your wife saved my life) helped me in the car. I feel that BM ate up my muscles during my coma as I could barely raise my hand, and I was in excellent condition when I got sick. I started walking with my walker at 2 weeks, the following week I began using a walking stick, now I can walk without any aid but I have to take my time due to dizziness and balance issues. I walk like a drunkin sailor:)

    How was your hearing when you left the hospital? And you say the deafness bothers you now, are you totally deaf or can you hear a little?

    It's good to hear the vertigo is mostly gone, that really messes me up.

    Thank you for sharing your story, it has enlightened me and has given me hope about my situation. Best Regards, Dynomite

  • hi steve

    i have just read your message on her and if i did not know better i would say u where writing about me.

    I was the same as you got up for work on the friday mornig and legs hurt thought i had the flu which i would have expected as the week end before i had done a out door first aid course bring people off the hills in pouring rain and at night , then i had been quad bikeing 3 times that week again in thee pouring rain

    so the flu was good bet

    My wife called 999 at about 1am a medic car turned up and he could not find any thing wronge Lucky for me a 2 man ambulance turned up and took me to hospital it was 11am next morning they worked out i had bm with sep i have seen the pics they took and i could not see it was me i was black

    any way i had a month in ic then 3 weeks cridical support team

    then i had a doctor come to see me i new and he had me moved to his ward at another hospital where i spent 3 months

    i was told i would never walk again but with stupid at times pushing mt self i am now on crutches but there fun have broken bones and ribs with them

    all this took place in nov 2003 and i still suffer with a list off things

    no body can really know what it is like unless they have been there and same goes for your close family i am sure at times with out my wife i would have taken the cowards way out but thanks to them i am still here

    all i can say is i still take it a day at a time

    all the best keep going i wll not say it gets better because in my case it has not

    but keep going and all the best to your wife she sounds like mine a real angel

    all the best

    ps

    you say about rugby england won the world cup the first week end i was in and i missed it and it was ove 2 months before i new i still have the video off it to watch but i have not has it makes me think off that weekend but one day i have the courage to

    all the very best

    ps

    if u are on crutches do what i do and decorate them up with tinsel and lights at xmass a great way to start talking to people about bm and its good fun to please try it

    paul

  • Hello Stevie1961, I also had bacterial meningitis back in 1983 and I also am deaf in my right ear due to the high fever caused by meningitis.. I was reading your story and the doctors also told my family I probably wouldn't make it but here I am. Anyway, to awnser your question about the dizziness ever going away, I'm sorry to say that it won't. It's been over thirty years since my diagnosis and I still get it. It's definitely not like it was but still comes and goes. I would say it's more like Vertigo now. It only effect me when I'm doing alot of bending over or when I travel via aircraft. Everytime I travel aircraft it puts me down for a couple of days. I hope this message finds you well because I see your post was four years ago. My diagnosis was so long ago that I was one of the first test subjects you use the cure drug still used today to treat bacterial meningitis. The good news is that other than having slight Vertigo and deafness in my right ear it hasn't effected my life otherwise so I'm sure you'll be back to normal with time. Your story is the very first story I've read with the exact same diagnosis and exact same long term effects as me so I wanted to give you my experience and let you know that as long as you don't do alot of bending over and avoid airplanes then you'll be fine and shouldn't have day to day long term effects from this. I would like to hear back from you if you get this message. My email is BrandonWill29@gmail.com. Thanks. I would love to see what effects you have from this, if any.

  • Hi my name is Miriam and I am from GA

    I had a case of Spinal Bacterial Meningitis this past Jan. and was never confirmed what type it was. The ID doctor says it was due to Prednisone but they never agreed with a DX and after I was done with the IV therapy the ID dr. left me to figure life out. I have a very positional head and stay dizzy all the time. I am searching for what to do. I have a neurologist but that is it. I too as i have read on here left the hospital with no instructions and attempted to go back to work and did more damage. My head feels like a ping pong ball and you are just done for. Can someone pls help me even tell me which way to go or who to go see. I have to not must need to do it before the end of the yr. PLEASE HELP ME AND TELL ME WHAT TO DO, THANK YOU

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