Bacterial meningitis

[Stace30]

Hi everyone

Im a hardworking 30yr old who seems to pick up a lot of stuff but the doctors always say my immune system is fine hmmmm

25th sep 2015

Night out with girls but as soon as i woke up the next day i had full blown flu; thought it was a bit strange as i dont usually get flu; just colds and bad temps around winter.

So this flu was two weeks in and i had tried everything;

Cold and flu capsules

Head over a bowl of hot water and vic

Paracetamol

Cough and throat medicine

Head cold medicine etc etc

Nothing changed; usually something will supress it or make it feel slightly better but nothing changed, the rubbish behind my nose felt like it wasnt moving at all and so i thought maybe ill try swallow stuff get rid of it out of my sinuses (bad mistake now)

So going back the first week i went to my GP who said i need to have three or at least one day off take paracetamol or lemsips, plenty of fluids and rest, i thought this was stupid as its what im already doing bar the resting hmmmm

(So looking back i remember my forehead heard but i thought i was just stressed at work; constantly rubbing my forehead, i also kept thinking my eyes were sensitive but blamed this on my headaches and i had a stiff neck mainly the back right side which i blamed on not sleeping right and i also looked at my right arm one day and thought it looked yellow but i shrugged it off probly thinking it was because my eyes were funny etc) .....

These symptoms went on into the second week and on the monday i came home from work falling asleep on the bus feeling really ill; all over ill and a bad temp

this temperature got worse and followed into tuesday i never have time off work but it felt that bad my whole body ached so i rang in sick and just slept.

I got up on the wednesday and offered to go in work on my day off as i felt bad for not going in the day before...

I worked hard, as best i could and my temperature started to come on, my headaches and everything else as mentioned before.... But i plodded on as there was a lot do and ended up doing a 13hr shift (not knowing how ill i was)

After the shift i was completely exhausted and felt really weak, i got a lift home and went straight to sleep.

I then woke up the next day at 3:30am with the most excruiating pain i have ever felt in my right ear; i literally cried from the moment i woke up!

I rang 111 to see what they thought and they said to go the walk in centre.

At that point any technology; tv, phones, radios.... Echoed through my ear, the voices would go through my ear twice and the background noise would be peircing; it really hurt and couldnt cope with it, i rang in sick as much as i could bare to be on the phone and got a taxi to the walk in centre (of which the radio in the taxi was excruiating to my ear). I sat holding/covering my ear and to cut a long story a little shorter the guy nurse in the walk in centre said my throat looked saw and my right ear looked very red and angry and inflamed and sent me on with drops....

(Of which i now no were anti-fungal and as the hospital doctor said "absoloutly rediculous and were doing nowt for you".

Great so no painkillers the wrong medicine and im literally constantly in tears with the pain, we wont go into the attitude of work of me having to have three days rest etc

Anyway i get back home and im still taking paracetamol which i already had it slightly helps it but im constantly crying and freaking out with the pain, i think i fell asleep in the day twice for about 20mins then the pain woke me straight back up.

To me it didnt seem right and i do think that i am one of those people that dont have many symptoms to things.

Anyway so my mam came around 5pm and i couldnt even bare standing up and opening the door but i did and again im tears. My mam asked me a few questions about it and we sat there for about 30mins just with me not being able to sit still but then not move much on the other hand because i felt pressure in my head; ive been through a lot of stuff in my life but this was excruiating... I was constantly sobbing!

So after my mam talking me into going up hers so that somebody could watch me,

(Oh n my balance was really off)

I only had to walk a street or two to my mams but i had no balance and had to be held all the way up their.

On getting there i was off and on with excruiating pain, temperatures and vomiting it was awful and i remember keep saying is this what an ear infection is like; ive never had one but it seems extreme.

A while later... People watching me freak out, be sick, sobbing etc, 111 got called again they said i seemed worse but still didnt come across with any urgency they gave a number for a 24hr walkin GP which at this point it was about 8/9pm and the apoint was around 1:30am.... I couldnt cope by ten pm my family were telling me to go a&e but i thought i was wasting peoples time and being stupid if i went and also didnt think i could cope with it all if i was sitting on show on a little hard chair in a&e.

Eventually i did as i was told and went. I got seen quite quickly and given codine for the pain which just kept making me throw up. I must of been in the waiting room about 4hrs!!!! People not in pain got seen before me i was the last!!!

At the time you just push through it but thinking back of what i know now i am disgusted that i had the most severe case of meningitis!!!!!.... And there was no simple blood test!! I was sat in pain with this disease getting worse!

After the four hours i was in a cubicle

Some bits i cant rember but i got swabbed, had bloods taken and two different lovely doctors looking at my ear which they both hurt after a while i was having an ecg

A nurse noticed a blotchy rash on my belly and back of which i hadnt seen before and by time the doctor looked it had started fading; he kept pressing on it but i was none the wiser, one doctor mentioned stating in for a day; but i still wasnt sure what he thought a out my ear; wether he thought mastoiditis or not.... He was on about time off work, people cooking meals for me etc....

The next thing i knew i was on a ward people across from me staring at me,

I didnt know whst was happening or where i was, i must of been moved and fell asleep..... I then had nurses all around me with a big white fan blasting cold air on me (i was freezing!!!!) they then stripped the covers off me... All of them!!! (I didnt like it at all) and then they quickly dragged all my clothes off me and put a little thin gown on me.... I was that cold my whole body was shaking and jerking and my muscles were hurting! They said my temperature was really bad and has to go down!

I remember people and lots of them all around me most of the time and constant obs, bloods etc, the worst/most critical timd was the weekend i went in and the week after......

I dont remember some details or which days but looking back over that time they were looking at me like they were scared ad though something was serious; i couldnt comprehend much, i wasnt always awake and when i was i was bein prodded, stabbed, coughing or being sick or literally to weak to even pick my hands off the bed.

I remember i had a bad cough that was so bad it would wretch my wind pipe and i couldnt breath (that always scared me)

I had a lumbar puncture....that was hard, i was so weak and scared and still didnt know what was going on, i was on all these different ivs for pain, fluids, n machines etc, n had to get into a position and keep still.

The staff seemed to be hiding what they thought was up with me.... Probably until they had all the information and not to worry/scare us. I remember as soon as we knew i was constantly getting moved to different beds/wards etc.

So i had mastoiditis..... Which is whats up with my ear and carries the strep disease what bacterial meningitis is and so the disease aparrantly went from my ear and down into my body from what i remember a nurse saying.

I had pneumonia! Septicemia! And bacterial meningitis! Oh and i was dead in the right ear now completely! And also the infection went into my lungs and my left lung collapsed and i had to have a cafeter fitted as i was mostly out of it and to weak to move.

I was scared and anxious and one day theyd say i was stable and the next i wasnt.

I had been on several wards including intensive care which really panicked me, before intensive care they gave me oxygen but then rushed me to icu on which they wanted to fit an aline into an artery on my wrist to constantly take blood and also gush air into my lungs....

So at first it was dark/night time so not nice, and a male doctor was going to attempt to do an aline..... I asked for numbing spray or gel they looked at us like we were from another planet then acted like they couldnt get any then eventually put some gel on both wrists and a peice of plastic (not for long) then as my mam told me he stabbed both wrists several times with anesthetic which i felt every time and then he began trying to put the aline through which i felt several times in both wrists! I couldnt cope!!! I was distraught!

After that a lovely nurse/sister from another part of the critical wards cane to me and did it while easing me and the first time!!! it was tough and you really feel it getting shuved in. Oh and all this was going on while i had what seemed huge... Oxygen face mask on.... Straps all around my head, covered most of my face and gushed air into my nose and mouth, i really didnt like that and kept trying to pull that off as it realky panicked me and made me claustaphobic!

Between all this stuff/days/week, my family got told that i was a very very poorly girl and tht they are doing everything but at the moment some things are failing etc

My temperature was constantly 39, or would keep creeping back up to it, my blood pressure was always low and i remember getting told my blood was 700, they then changed antibiotics to the right ones and byt the time the second week it was down to 80 ; which i gather was the infection/disease in my blood. By time i was discharged it was 4.

Through out my time at the hospital i was there for three weeks, i was a very lucky girl and pushed throught to get several ct scans and mri scans as urgent, i had that much fluid iv that my hands face legs etc swelled, i didnt eat or drink for a week or over, i had so many needles and tests, i had hospital syndrome; nightmares sometimes when id only just closed my eyes.

I wouldnt say i go to church or always talk to god; but i literally would cry everyday because of all the stuff id have to go through and id say "God... Please give me the strength to cope with this" every day. Honestly i dontknow how i got through it, every day i wanted to not be there i couldnt cope but as much as they were allowed; having a close family member to hold my hand meant everything, even just jnowing they were there. Every bit helped!

I had some really horrible careless nurses who wouldnt wash me if my cafater didnt work and beforehand wouldnt listen when i felt it wasnt working, that would push the liquids in to fast and constantly cause me pain, or set my stuff out/give mt the buzzer or a sick bowl when moved to another side room etc or theyd try take my temperature out of my bad ear after it was written on the board and id tell them.

But also there were some amazing ones who unfortunatly would have to wash me down but didnt care aslong as i was ok, or would tidy/set my stuff out nice and make sure id got everything i need, or one lady stayed over her shift to move me in another room that was more peaceful. (If only they were all like that)

I could carry on forever about other treatments or lack of about the food or lack of or being forgotten about etc but it would take forever.

Anyway back on track ....

The third week in hospital they took the cafeter out after a few mishaps and i had to walk for the first time in three weeks

Bare in mind i didnt realise until i had help to get up i could hardly walk, i was really weak, unbalanced etc oh ans i came on my period a week early probably because of the disease and it lasted a while.

So moving was a real struggle and so was eating again and i started to get down and fedup because although i was stable and a lot better off i felt like i still had so much wrong with me.

Before discharge i had ward release which because i had constant help and had been in for so long i was worried about going home; the first night my lungs hurt if i slouched or lay down id ha e hot flushes then with the pressure in my head i would panick but i stayed at home until i had to go back, you feel like when you get discharged you should be completely fine and fit so the monday of the fourth week on getting discharged i was worried as i had a bag full of painkillers, antibiotics, ear drops etc i could hardly walk, i still felt very weak and a lot of pressure around my ear and head and i was still deaf in my right ear.

Oh forgot to say my ear drum burst because of the pressure of the fluid/air and blood/fluid would drip all over me and my family had to ask for me to be cleaned up as i was left like that when they arrived and i couldnt do it myself, anyway but the doctor said it was probably a good thing really because otherwise they may of had to drain/operate on it.

So on leaving hospital my first week at my mams house as i needed a lot of care still most of my time i lay or sat down and reading or watching tv was still a struggle as the lights and concentration was hard ( oh i also wore sunglasses in hosp because of the lights, or the nurses would put towels over my face if they had to have the light on for something).

It was also hard as i was about 50kilos which is about 7.8 stone and every muscle in my body had literally dissapeared; i literally completely lost my bum, my legs, there was no muscle in my arms, every bone stuck out and my cocyx also really stuck out and hurt to sit or lie with it and even trying to lie on my sides really hurt as they were so boney now, if i walked it hurt, my knees and hips would click, i felt unbalanced and really weak.

Its just gone the second week of being out and im on monday of my third week discharged

I still have pain and pressure....

My forehead, the back of my head, off and on around the back of my left ear, a lot around the back of my right ear and down, off and on in my right ear, and my neck, i cant lie proply because of the pressure and pain, anything that i lean on that touches the bottom of my head/top of my neck makes my head pulsate

Lots of horrible pains and weird feelings and you also get fedup as you cant do much and you think you are never ging to be rid of all these issues and also you read horror stories and ongoing issues of stuff on google.

I have also started feeling like im going to throw up for the last couple of days now...

I dontknow if thats because i have ibs but im eating anything to get better, or wether its because im doing to much or wether theres still something underlining or wether its because my bodys had enough of all the drugs.

I also had prickly rashes all over me in hospital they think it may of been a tibuotic reaction after the amount of time i had been having it for.

Anyone that would like to shed any light on anything or ask anything feel free

Hope i havent gone on to much

And just to say as much as you get better there are a lot of struggles and emotions etc that people/onlookers think your fine and dont understand what your still going through. Also i may have to have an operation on my right ear

And have a follow up/checkup on december first for the infectious diseases doctor.

The doctors said if i hadnt been brought in by my family to a&e when i did they may not of got it in time!

They are also shocked how well i have recovered.

I go through days where i am feeling very happy and lucky to be here but then also days where im fed up of still being ill and is it ever going to go :/

Thanks for reading **

[StrawberryCream]

Hi Stace

Thank you for sharing what happened to you when you contacted the nasty and life threatening Bacterial Meningitis. Sadly it is not an uncommon experience with the delayed diagnosis as initially the symptoms are similar to other non serious illness such as flu etc. Your presentation and ear problem is not dissimilar to my own. Thankfully you did get the necessary treatment before it was too late however or having more serious life changing after effects. I too in hospital reacted to some of the medications and ended up with a very itchy rash all over my thighs! Have you had a hearing test to check whether you have any damage to your hearing? So much of what they have to do to us in hospital to save our lives is very invasive, unpleasant and uncomfortable and with BM giving heightened sensitivity to touch, noise and movement it all feels intolerable doesn't it! once I had come out of the coma I just wanted to be left alone from all the prodding, poking and constant interventions!

It is very early days for your recovery because although you no longer have the BM infection your body still has to recover from all it has been through, build strength back up etc. You need to continue to schedule plenty of rest time during your days and listen to your body if it is struggling because you are trying to do too much. Initially it is not unusual to find just washing and dressing leaves you totally fatigued! I think it is common to initially feel a huge sense of relief to have come through a very serious illness but then gradually we connect with the reality of what actually happened and that recovery is going to take sometime.

Best wishes

[Stace30 in reply to StrawberryCream]

Hi

Yes had a hearing test before i left and they seem to think im deaf in my right ear because of my middle ear.

Yes i was the same once you start being more alert you really dont want prodded or poked or another needle.

Im yet to hear wether i need an op on my right ear or not yet; if i lie on my left ear i cant hear anything at all unless its like a phone right by me.

Also yes you are really happy to be so lucky and overcome something so horrible that you never thought you would get and you think you are going to be really positive from now on but also some says you cant help feeling frustrated.

The amount of times i literally have been told by GPs that i dont have yet i go a&e and they have told me i have; its just really scary and frustrating.

Thanks again

[StrawberryCream in reply to Stace30]

I have been left with reduced hearing in my left ear and because I had a GCS which dropped to 3 and the length of my coma, plus abscesses etc in my frontal brain I have been left with a frontal brain injury/dysexecutive syndrome. Sometimes I don't feel pleased to have survived because every day of my life is now a challenge and my emotional control is a disaster.

Hopefully you did get diagnosed and treated quick enough that given time for your body to recover that I hope any ongoing after effect such as your hearing loss will be the worst. Time will tell as I didn't realize some of my problems for a while.

Best wishes

[sorba]

Can agree this is a really scary experience and I went through it about 24 years ago, you would think these days that they'd suspect meningitis at once given the symptoms, hope you continue on the road to recovery, take care, Rowan

[Stace30 in reply to sorba]

Thanks rowan/sorba

[maineknitter]

Hi Stace,

I had it just over 4 years ago in September. Early days, like where you are now, I could barely even do more than get out of bed, go to the living room, sit or nap on the sofa, and maybe have one guest for half an hour. If they were family and didn't mind sitting with me while I napped, then they were welcome to stay longer, just I would have to take a nap in the visit.

Sometimes I had the tv on, but I don't think I ever could recall the topic of the show. And, forget about reading. Though within a few months I had taught myself to read most things. Now, I'm just shaky on reading in bulk and depth that I had pre sickness.

Some advice that I wish I had access to when I was in your spot, takke it easy for at least as long as you were in the hospital. Know that the medical information is going to be there and it won't change fast, ours just isn't one of the diseases that has a lot of research into the causes and so they don't find out new things quickly. You don't need to scour the web to find all the details on your details. Ask the hospital's records department for a copy of your full record.

Also, when I was put into the icu, I swear they had me on a bed with my feet pointed one way, even though I was really out of it. When I was finally able to talk and understand things, I asked why they had switched the wall the bed was against. They hadn't. My mind had tricked me about that. Maybe your mind has done something similar to you too. Unless your family also says they moved you a lot from room to room, it could just be a nasty brain trick from the infection.

Also, those emotional stories and nightmares you've shared about, they are common when in the hospital for a long time. Don't let the situation of having experienced them color how you are now, our thoughts can lie to us. And that's not just those of us lucky enough to have gone through meningitis, but everyone.

Also, the neurologist I have been with since getting meningitis, told me that healing from this will be a long term process. There are four six month phases. Phase one is the first six months, and that is the time of most healing. Phase two is the second six months, and is a time of slower but still a lot of healing. Phase three is the third six months, and is a time of slower healing. And, phase four is the last six months, and is the time of slower still healing. There is still some healing after the initial two years of healing, but it is really slow, and takes effort.

I am teaching myself French one because I want to be able to travel and speak something other than English, and two, because doing so is going to expand the neural network in my brain and make my brain work harder than it has in the past. And, three, it is fun.

So, take it easy. Find out about any kind of short term disability insurance and long term disability insurance and any governmental insurance payments you may qualify for.

I am not able to work. So, I am on food assistance and health assistance and disability income from the federal government here in the states. You sound to be from the UK. And, I don't know what the situation is like there. But, you need to take care of yourself. And, having this information is one way of helping yourself. The short and long term insurance should be through your employer as benefits, if our systems are similar.

Anyway, good luck, and good recovery.

[Stace30 in reply to maineknitter]

Hi maineknitter

Thank you for your reply

Currently im off work and get paid sick pay but im not sure how long that will last compared to my ongoing illness/ailments; its just really scary thinking this head/neck/ear pains, throbbing,pulsing, aching, pressure etc wont go especially after reading about other people that have been through it and still have problems. Its hard; everyone thinks your out of hospital and must be fine and i wish i was but the pains and discomforts and all the odd feelings i still get is really hard to explain, its not a normal pain or a normal headache etc its hard for people to understand.

Im trying to push myself back to normal by pottering around but like today i got up and tried to do the smallest amount of tidying and it knocked me sick;...

Nauseau, unbalance, ear pain, headthrobbing, forehead pain, peircing head pain, breathlessness etc

I tried to wean myself off painkillers to as the doctors said to try but not so that im in pain but i find if i dont regurlarly take painkillers the funny heads etc knock me ill/sick/disorientated :/

Oh and yes i got horrible hospital syndrome/delusions etc but luckily they went but yes i constantly got moved, i was on a ward then moved in a side room because i was contagious then icu as my lung collapsed then again one of there side rooms, and in the end infectious diseases ward in a room on me own; think thats about right.

Thanks for chatting,

[Stace30 in reply to maineknitter]

Also maineknitter

Sorry sometimes its easy to talk about yourself when you are going through something and forget to comment/ask about others.... Im glad youve got something to set your mind on and i hope youre improving all the time!!!

[Blim]

Hello Stace

You have been through so much. I am not sure many doctors or nurses are aware of ten full extent of BM. I was discharged after 2 weeks in hospital with pnuemococal (can't spell it) meningitis and the registrar wrote to my gp to say I was fully recovered. My husband had to push me out in a wheel chair, I couldn't walk unaided and couldn't do stairs at all. It has left me with a brain injury. I had to fight to see anyone. My gp was fab but didn't have a clue how to manage the headaches or what to do about the brain injury. So don't be afraid to push for help.

3 years on I now have regular neurophysio, my headaches are being managed after I saw a neurologist a few months ago who said they were migraines and so he recommend so preventative meds. He also diagnosed chronic fatigue. It doesn't change my symptoms but I am no so hard on myself if I feel exhausted..

I am now able to work 2 days a week.

What I am trying to say in a rambling way is BM can leave you with some horrible outcomes but there is help out there although you might have to make a fuss to get it. I have found both the meningitis trust and headway to be a lifeline. They were able to point me in the right direction but also help to understand what has happened to me.

The long term effects are also hidden (although I walk with sticks and use a wheelchair sometimes) and people will tell me how well I'm looking when I have a blinding headache and I feel really sick because my eyes ears and brain don't work well together (I think it is called vestibular problems).

It's only a short while since you were ill so be kind to yourself if you're not able to do much at the moment. I hope you begin to feel a little better soon.

Take care

Blim