I always wondered what it would be like to set up a meningitis anonymous group, you know, ‘Hi I'm Jonathan and I'm a meningitis survivor’ we could call it Meningitis Anonymous. Now you’re thinking what planet is he on and why on earth would you want an anonymous support group? Because I'm bloody angry that’s why.
Yes I am a meningitis survivor. I will forever be eternally grateful that I survived being the very small minority of people who have the viral strain so seriously that it’s near fatal and lived to tell the tale. I know what I've been left with isn’t half as bad as the things other people have to put up with but I'm human.
I was a fit and healthy 39 year old when I caught the disease, my brother coincidentally had viral meningitis four months earlier than me although the cases are not connected. I was racing triathlons, had a great job with an amazing employer, was (is!) married to a wonderful woman and had (have!) two gorgeous daughters. Just when you think you have it all…….
For ten days before the attack I had a headache and kept losing my balance much to the amusement of colleagues and family since I would just suddenly and for no reason fall over, even standing still. Then followed hospital, blue lights, sirens, lumbar puncture, being discharged too early, rushed back in three days later with veins collapsing, heart rate and BP dropping to dangerous levels, again and six months off work. That’s six months I can barely remember although for some reason I do remember my mother in law wondering how she was going to get home from our house as I was being loaded into the ambulance the first time….not sure why I remember that!
Now I haven’t lost any limbs and I look healthy and for that I am grateful but my life will never be the same again. I'm angry about what’s going inside.
So how much can viral meningitis affect you? Well I now have seasonal affective disorder, irritable bladder syndrome (sorry about mentioning that one but who’d have thought that one possible), a metabolism which has a mind of its own, no really it does; I once metabolised 5lbs of body fat (from muscle to fat apparently) in a week for no apparent reason, I am intolerant to cocoa following a brush with my brother’s industrial strength version just made with water and high grade cocoa (I was warned that I might develop strange intolerances if I had some foods in too high a concentration), I'm intolerant to orange juice, I have Mollaret’s meningitis, when I'm tired my body is caused to twitch by a brain still under strain, I am very sensitive to caffeine, can’t drink certain squashes, energy drinks, sports drinks (I'm still a triathlete), have a constant headache, suffer pins and needles in my lips and face at times, had to have five years off strenuous exercise, have short term memory problems with names, routes and directions, behave like I'm drunk when I'm tired even though I don’t have alcohol (no I can’t have that either) and periodically my brain has a Microsoft moment, it just drops out so that I don’t know where I am or what I'm doing for a moment a bit like ‘this brain has stopped responding, please reboot (go to sleep) or contact creators (parents) for advice on how to proceed’, constant pain behind my left eye, I don’t see my brother in law anymore (no hang on a minute that’s a positive thing) and I get confused easily even if marginally tired.
Yes but, people say to me, you’re still alive. Well unless I'm writing this from beyond the grave yes I am and I know lots of people don’t make it and lots of people have much worse visible symptoms. I know all that but, me, I, personally I'm bloody angry that a disease can do all this, affect me so much and leave me like this. Why can’t I be angry, why do I always have to be eternally grateful all the time as if the meningitis did me some sort of favour by not killing me? I survived principally because I was fit and my system could take the battering the disease gave it.
So I think my message is that whilst it’s good to be grateful it’s also OK to be angry so maybe that support group introduction should be…..’Hi I'm Jonathan and I'm an Angry Dad.
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Jonad724
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Am I angry...yes, the anger comes from a health system that didn't recognise the symptoms of repeated low grade meningitis (meningitis as the lining became infected) caused by a gum infection that spread to my ear and then inwards. I hear you now asking... didn't you know there was infection and the answer is no because I had started to loose feeling in my face. This went on for 6 months , I too had major balance issues and on my worse days could not stand upright. This happened 3 years ago and only due to a scheduled trip to see my dentist who took an x-ray and found an track of infection leading to my ear. This may not be what everyone knows as classical Meningitist but only recently had recognition from a different hospital that this is so.
I'm writing this because I want to let you know that it's taken me 3 years to get somewhere near normal whatever that is as I will never be the same. I am not as tired as I used to be but on bad days I am a complete grouch, I still slurr my speech if I get a headache or get the words in the wrong order. I have constant tinnitus in both ears which is depressing in itself and my head twitches when I ie down. But with all this I am now able to walk again read and write, enjoy life. I now feel confident that I can have a decent conversation with anyone without using up energy just concentration on doing so. The microsoft moment is so true for me and very awkward.
Keep going I really do think it's ok to be angry, the brain is an awsome thing when it works but a total nightmre when it goes offline. Unless someone has suffered from meningitis and its after affects they will never understand how hard it can be to get on with life, not because you dont want to but because you just cant.
So sorry to hear that, to go that long without a diagnosis must have been awful for you. You're absolutely right that only someone who has had meningitis (or in the case of the Meningitis Trust helpline nurses) those that work with the illness day in day out, really knows what it feels like. I have vivid memories of printing the page from the Trust website about viral meningitis after my GP had to finally admit he didn't know much about it and wasn't sure what after-care to provide. It took a while though and like some doctors wasn't keen to admit he didn't know.
2012 sees the ten year anniversary of the attack but there is light at the end of the tunnel if you bear with it and get past the first few years following the attack. I couldn't do any strenuous exercise for 5 years on the advice of my (Harley Street, good old BUPA) neurologist but in 2012 I'm competing a half ironman triathlon in aid of the Trust. It'll be 8 or so hours of pain but I hope it's a signal to other sufferers that given time it can be done and there is indeed light at the end of the tunnel.
If it all gets to much, and there are times when it will, ring the Trust helpline as they are very good and really understand what its like. I hope your recovery continues on the same track.
It was my eldest and at the time my only daughter who suffered at the hands of meningitis, April 09th 2003 to be precise.
She never lost limbs either, but every skill she had built up in her first 18 months of life, further to that she presents with some very similar after effects that you mention also "un-diagnosed"
The short of it has led my wife and I into depths of depression, something I fear Iona may suffer with in time.
Your piece is a breath of fresh air, meaning to say it is (strangely) comforting hearing input from an adult in adult language explaining what is happening following this disease.
Please if you have a moment read my "blog" posts, then you may understand my comment.
Hi, I read your blog piece just after you posted it and it was a very moving and eloquent description of what this disease can do to and continues to do for years. I'm glad my post was of some help and as Iona's and so many other cases show children are very resillient and capable of doing so much more than the medical profesion thinks.
It does make you realise that in actual fact the medical profession knows less about the human body than most people would be led to believe. I even had to take the Meningitis Trust leaflet on viral meningitis to my GP before he would consider signing me off further from work even though I could barely stand up.
I hope Iona's progress continues and you'll keep us all updated here on how she's doing! I suffered long and terrible bouts of depression following the meningitis and so know exactly what it feels like and I wish you all well for the future.
im an angry mum does that count!! as you may of read what ive written on here already. i was and still occasionally get really angry that my baby got meningitis, we spent a long time grieving for the son we should of had and now embrace the son we do have. im angry that this happened to joel and not someone elses child! he has had both legs amputated and when i see children of similar age i get so envious of them. why did this happen to my child, i don't know but it did.
Yes being an Angry Mum counts and what I've discovered is that its OK to be angry. Do use the Meningitis Trust services though because you are not on your own as they are incredibly experienced in helping sufferers and their family get through what has turned your world upside down. I don't think anyone really understands unless they've been through the meningits experience and can't really work out why when they say 'yes but you're alive' or in your case 'your baby survived' you get cross. As I said above are we supposed to be grateful that meningitis didn't kill? Of course for the families who do lose loved ones that would be a blessing but we are human and sometimes its difficult to rationalise like that. This damn disease also taught me that having regrets doesn't help, you made the decisions and had the feelings you had because that's who you are and so embracing the son you have now is great but I don't think you shouldn't feel bad that this might have taken a while. Good luck and keep us posted in this community!
Maybe you should change that hi I am angry dad, to hi I am a survivor and its ok to be angry!
It is ok to be angry I think as long as it doesn't take over your life, my 1st bout of meningitis was when I was 5 and due to error it was missed I was born with a defect to my frontal lobe that without fixing would lead to re-occuring meningitis, it wasn't fixed and so my life from then to 20years old involved meningitis- whether it be suffering or recovering.
Everytime I thought I was free of it, it re-appeared and doctors had no reasoning for me.
I was in a coma with this horrid illness during my pregnancy with my lil girl something which doctors swore would not happen!
If you look at me you would never tell as it has left silent scars, kidney failure to right side, blindness to right side, deafness to right side, severe memory problems, mobility problems, artheritis and epilepsy all which meningitis caused, which non can be cured. Treatment for the meningitis also caused gall stones, mrsa sepsus!
I was told when I got angry it wasn't normal behaviour by the doctors and other people said I was been selfish as I should be glad. I survived, so I learnt to control my anger towards what happened.
I will also have anger towards it as it took away my childhood and I will always be thankful I survived 3 coma's, but it is nice to know that some people also get angry, and its ok to be angry, however I feel it has took to much of my life and I do not want it to take up much more and feel if I hadn't learnt to deal with my anger towards it that it would still be having a hold on my life
Thanks Hannah, it was a bit of a tribute to a Simpson's episode called 'Angry Dad' where Homer says 'Oh no I'm an angry dad' but I take your point!
One thing I have discovered with having meningitis is that doctors actually know very little about it, the side effects or what's 'normal' afterwards so I tend to take what they say with a pinch of salt really. There's only so much gratitude you can exhibit before you say 'actually there are times when I'm bloody angry'. I agree you have to learn to live with it otherwise it just eats up your life. I channel mine towards triathlons so I'm so damn tired to be angry most of the time! Glad my post helped though. J
Can I join the angry club please. I used to have a brilliant mind; It was quick, logical, retentive and I had great powers of recall. I was confident, quick witted and sure of my facts. Now that may seem like I'm blowing my own trumpet but nevertheless that was the person I was before BM .... I'm now the anti of everything I was prior to this dreadful meningitis.
I no longer do the work I used to ..... I don't trust my mind to think quickly or sharply enough ..... When adding up I somehow manage to get 100 + 100 + 50 to something like 476 ??????? what's all that about and where's the logic in how I managed that answer with such simple numbers. And that's not an isolated case, it's something I do frequently.
People say I look and sound just the same as I've always done .... hah ... how wrong they are. Granted, I may sound reasonably articulate but the fact remains that I know how much this BM has affected me. Inwardly I'm screaming and I'm mad and I'm frustrated. I don't see people any more if I can help it and I'm changed person and yet everyone tells me how well I am and how good I sound .... aghhhhhhhhhh !!!!!!!!!!!!!!!!!!!!!!
All are welcome Welshfarmer :-). Its when an illness affects you so much and people say 'still you're lucky to be alive' that annoys me. I know they mean well but it doesn't stop the craving for the old you, the person who like you say was articulate and quick witted. I just wanted to make the point that its OK to be angry with what meninigitis does to you. Having now completed two half ironman triathlons I now having people saying isn't that amazing given you're a meningitis survivor, yes it is and I do them in spite of not because of meninigtis.
And a sigh of relief that like you its not about having sympathy or attention or anything you just dont think you should be lucky that youre not dead and i agree
Most people are saying youre very lucky to be alive and a lot of people think you should be and although my body was failing,collapsing and i had the lot while i was in the hospital yes im far from that now but how is it lucky
I sit in the same four walls
Doing the same things
Not well enough to be normal
Nowhere near well enough to go work or to be doing all the things everyone else is doing at this time of year and im like "im lucky" like you jonad im angry and frustrated and not a lot of people emphasise, allow it or know anything about it enough to comment.
Its also frustrating like many i rang "health professionals" twice
Saw my gp/a gp
Went to a walk in centre
And even reluctantly a trip to a&e was a wait for four hours! ....
Why should i have faith in the nhs
Why should i be grateful for two weeks of being misdiagnosed :/
hi my names david just out of hospital 2 months with viral infection to brain ,blood clott on my brain no sighns had bad head ache for a few days before but never realy thought anything was wrong,and on the sunday very lucky my landlady woke up to hearing smashing crashing let her self in my flat to me runing banging me head off the wall blood bath flat trashed wich is not like me,this was my brain shutting down,and if it wasnt for val my land lady i wouldnt be hear sirens ambulance cumberland infirmry were i was on life support for 8 weeks,i wake up confused realy wanting to just get out of hospital,skinny tubes every were,and lost my hearing well 80 percent ,and had to learn to walk again,ive stayed posative and yeah im lucky to be here,doctors called me a little miricale,but xmas carlisle hospital didnt diagnose me with meningitus for 2 weeks and doctors from newcastle were they sent me in end coz they didnt have the equitment,said they had wasted valuble time,its took ages to get my head round things coz one minute i thought i was ok next was a wreck,im 35 5 kids self employed spray painter,ive cracked on over last few months at phiscyo ,and came on well fighting to get me balance back so i could go back to work,reading these posts today realy helped coz i am to realy angry feel ripped off by meningitus,nerve damage balance hearing sight,im going for implants on me ears two days before xmas ,and realy just wanted my kids to have a nice christmas with dad coz they and my loved ones were the soul reason to keep fighting,i avoid me pals make excuses i now ive done well but cant even hear my to youngest chilldren and that realy hurts,i ive said to few people i just dont feel like me anymore,and id give anything to get my spark back, my gps dont realy have a clue to be honest,i just cant believe one disease could turn my life upside down,nd just want to be me again, my heart goes out to everyone on these posts, and its nice to now some people actually now what im going through thank you everyone feel better geting this off my chest and reading other peoples post,thanks for your time and lets try fight this,thanks david bailey
You've done so well, because you had the strength and the will to survive. You learned to walk again, and you're determined not to let the consequences of such a terrible illness bring you down. You will overcome the fear, because you've come this far. I cannot imagine the pain and suffering you endured, but it was hard to see. So hard. It must be difficult to compare how you used to be before meningitis hit you with such a mighty blow - and that's exactly what it did; but remember you're still YOU and those around you will always support and love you. ADR
Found your comment finally! Thank you for being so honest! I feel this way too. I am so so grateful to be here and realize some have it much worse but am angry too! I literally remember thinking everything was going okay and then bam meningitis and the rug is pulled out from under you. My mind is up and down and all over the place with thanks, anger, sadness, anxiety. Everything. The mind is a powerful thing and when it is all over it makes everything so much harder!
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some advice…….
Grateful
Recovery after bacterial viral meningitis 
One month into recovery and it’s so overwhelming
