One of the common themes in questions about viral meningitis I see is 'when I'm going to be back to normal' or 'I just want to get back to normal'.
For some people viral meningitis is a bit of an inconvenience for others, unfortunately like me, its a life changing experience full of compromises, after effects and adapting what 'normal' means.
I remember that feeling of wanting to get back to how my life had been before. A life where I spent the first 39 years thinking I was invincible and the time since realising that when it comes to viral meningitis sometimes life has a strange way of proving me wrong. Invincibility to dotage in 10 days flat.
I had what you might call a hectic life, metaphorically going at a 100mph, ambitious and training for my first open water sea triathlon but late for everything (just ask my poor long suffering wife) and with about as much athletic talent as the late Bernard Manning.
Patience isn't something I was good at, people to see, places to go.although strangely I have always driven like a pensioner on Valium, yet something else I'm not very good at.
When viral meningitis struck I just thought 'its an illness, I'll be in hospital, I'll be treated and then I'll be back to normal. If an illness has a warped sense of humour viral meningitis has it, warped to the point of sadistic pleasure if you ask me. So when I was discharged from hospital barely able to walk and hardly able to string a sentence together without confusion and dizziness (it depends who you ask whether that was an after effect of the VM or I was like that before) I thought I'll give it a couple of days and I'll be back to normal.
Well I did try but on third day after I was discharged from hospital I was rushed back under blues and twos with collapsing veins, critically low blood pressure and a Glasgow Index score 7-8.
Fortunately at the time the firm I was working for insisted all employees subscribed to BUPA and I was able to see a neurologist at very short notice, coincidentally he also had a practice in Harley Street. Once he had explained what had happened and what i could expect he told me to be patient or 'buy a really good funeral plan as if you don't slow down it'll slow you down permanently'. Not really what you want to hear at any age let alone 39.
He introduced me to the concept of adapting my expectations to what normal is. Following the second run in an ambulance under blues and twos he explained that it could be a long time before the after effects subsided even if they did at all. It's a lottery and one run by an illness I am convinced has a wry grin and an uncanny sense of uncommon irony.
Bearing in mind I was bed ridden for nigh on six weeks, off work for a shade under six months and could kiss goodbye to being a triathlete for around five years going from patient to patience was a hard and difficult road to travel.
I just wanted to say 'thanks viral meningitis but I'm done with you now' however you don't think an illness with a sadistic streak, a wry sense of humour and sense of uncommon irony is going to let me off that easily, oh no.
So if you're in the early stages of recovering from viral meningitis and you want to get back to normal, believe me I do understand. Maybe though you need to change what normal means to what life gives you each day and maybe recognise what's normal one day may not be possible the next. One day you'll feel like you've stuffed VM into a cocked hat and another you'll wonder how the ticking of a clock could be so damn loud.
Patience is a strange thing though. Ten years has gone past since I had the attack of VM and I am back to being fitter than I ever was before the attack to the point where I'm taking on a half ironman triathlon this summer, something I could never have considered 10 years ago even if it existed then. Yes I have many after effects which slow me down and remind me I'm not invincible but you know what? I'm back to normal because normal for me is what I can do today and what I know I'm capable of doing despite the illness which has changed my life. So viral meningitis you can bog off now, I'm normal.
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Jonad724
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Just wanted to say I liked your post (well don't know if like is the correct word!!), but I understand exactly where you're coming from.
I am just approaching the 7 month mark, been left with many after effects and still not well enough to return to work. I think it's true "normal" changes I am dying to get back to "normal", but at the moment have got to get used to this "normal" where getting through the day trying to be as "normal" as possible at home is a huge struggle that people who haven't been affected don't understand; I'm fed up with good meaning aquaintances saying "you look fine to me" - yes i may look ok on the outside (allbeit a bit pale) but they've no idea what I feel like on the inside (especially inside my head which feels as if it's on another planet), and I'm fed up with being told that they know someone who had vm and they were ok after a couple of months, not like me. What I hate more than anything is the lack of knowledge about the after effects, and as you say this disease is like a lottery you don't know at the beginning how it will leave you - some luckily better than others, sorry about the rant I'm really FRUSTRATED by this damn thing!!
Hi Rhiannon, thanks for your comments and sorry you're going through this but believe me it does get easier, it just takes time. You might want to read one of my other blog posts
which covers the frustration I felt, and still feel, about what VM has done to me. In essence it says yes I'm grateful to be alive but I'm as mad as hell as to what this disease has done with my life. With my GP I got so sick of him saying 'well its meningitis so you're not still ill as you'll have recovered in two weeks' I took in the MT leaflet and asked him straight how many patients he had treated with VM, he waffled a bit but I wasn't going to be put off and he had to admit he actually didn't know much about VM.
The thing it took me about five years to learn was that its OK to be frustrated and have a rant now and again, there's no need to apologise either, especially here!
Eventually you learn to get used to people who mean well saying things like 'ooh my friend had that and after two weeks she was back bungee jumping' and 'You're lucky to be alive I bet you're grateful for that?'. Whilst I am indeed grateful that I have seen my daughters grow up and I have had another 10 years (and hopefully some more) that I wasn't expected to have I don't feel particularly grateful to VM for not killing me!
Have you joined the 'I had viral meningitis' Facebook group, if you haven't you might find it worthwhile to share experiences. Hang in there and once in a while have, what my Mother calls, a bloody good rant, believe me it makes you feel better! Take care. J
Thanks for your kind words of support. I have read "angry Dad" (I'm an angry Mum"!!), - very well written. I previously joined the facebook group.
I'm glad the MT are doing more research into VM as their next campaign as there is so little understanding in the medical profession especially regarding after effects.
Although you've had a hard slog, the fact that you're doing the ironman shows that you can get your life back eventually, which (at 35) I really have to hope and believe.
wow !! a great worded post ... i am just recovering i was in hospital all over easter .. and just about walking around the house now , the pains are so in humane !! i cant understand how that morning i was ok well had headache , but okish and that evening rushed to hospital ... i was also going at a fast pace always out and about doing bits , love my job in a special needs school .. but am just so bored/depressed/fedup whatever the right word is .. i need to get back to work before i lose my job .... but i just cant physically do it at the mo ! its awful .. but you have inspired me to change my view's on 2getting back to how i was" thankyou and good luck for you half ironman triathlon this summer x
I think the pain in the butt bit is, you look normal, etc, but the brain seems to be re wired, like having vista and then you have been up graded to windows 7, you know what you need to do, but cannot find the icon to do it, when I signed myself out of hospital, as I was convinced the nurses and doctors where just making everything worse, I had a week of throwing up for England, but been a wired person, it did not bother me, as I am freelance I had to tell my body to get over it, as if I did not work I did not eat, so off I did and worked my gigs, ok everyday my mind told me, no you cannot do it, but my tummy said feed me, it has been a year now, thou I look normal, inside, I have a fear of head heat, the min my head gets hot, I think OMG is it coming back, this I know is just fear, so I tell my mind to bog off, ok my iummed system has gone to shock, so many illness and last week I had a SVT, (heart rate 180) but luck would have it, had a gig the next day, so got of my ass and went to work, ok the 3 day gig, I thought this is it I not going to get threw it, but like many of you we think, ok it was just an illness and cannot affect us all the time, so to all of you out there, tell MV to bog off, go away we have a life to live. and so bored with all the side affects, gosh if it was a boyfriend I would have binned it by now haaaaaaaa
Thanks Tiga, viral meningitis is like being in an abusive relationship you can never leave! Hang in there, I'm self employed as well and it does get easier, really it does.
Have any of you tried acupuncture? I am researching Eastern/Western medicinal and nonmedicinal treatments. I am super sensitive to medications and dislike how they make me feel. I am two weeks out of hospital with viral meningitis. My headaches seem to be worsening. After reading some responses I am realizing I am not alone. Lying down to sleep at night makes it worse and I am not one to function well without 7-8 hours of sound sleep.
I forgot to mention that I am married to a physician, Internal Medicine. He always reassures me that just because something is not printed in a medical textbook does not mean it is not a possible side affect. Not all physicians have that "know it all" attitude. However, his "give your body time" is frustrating me! Patience is not my stronghold!
Thanks Shuggy, hang in there. I haven't used accupuncture myself but to be honest I feel anything is worth a try. I had five years of giving my body time so I do know how it feels. It is though the only way to move your recovery on. Good luck and glad to know not every doctor thinks the same way!
I know this was posted a while ago but I am new to this site and just read it. Thankyou so much. I am 11 months post VM and still suffering so it is just good to see that other people are going through the same things. You also write very well!
Thanks, I do try! Glad my blog post helps and whilst it sometimes takes longer than anyone would want things do improve. New blog post coming up over this weekend at some point Hope you're recovery continues well.
I don't come on here often but I'm glad I did today , I've just read your post...... I'm 3 yr post vm and boy what a long travelled rd, I still am not that well though the last 4 months Ive been feeling much better though still finding the fatigue thing a pain in the a.....e
Your post has given me such a boost as u see I'm a little frustrated and hurt u could say. A family member was questioning me about returning to work, of course something I can't wait to do but stupidly I did that in my second year and boy did I no it, I pushed myself too hard and paid a price. I will soon i hope, il give it a few more weeks and start looking. Your post has helped me see there is light at the end of the tunnel, fab! I just can't wait to get there.
Hi Siobhan, sorry I have only just noticed your reply but I hope you've continued to make progress, I know VM is not the easiest disease to recover from but it is one where time really does heal. Best wishes. J
Thanks for sharing your experience. It really helps to know that there is a light at the end of the tunnel. It had only been two months since I was discharged from hospital but I am so eager to get my life back.
Well done for being positive, there is indeed light at the end of the tunnel and as I'm training for my third half ironman triathlon this August I'm proof that it isn't a fluke. Patience is the key though I'm afraid, something I was never very good at but rest now means more of a life later. Good luck!
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