It's nearly here.......: For me there are two... - Meningitis Now

Meningitis Now

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It's nearly here.......

Jonad724 profile image
6 Replies

For me there are two very big days this year in July and August: July 13th is 10 years since I survived a near fatal attack of viral meningitis and August 19th is the date of my first half ironman triathlon in aid of the Meningitis Trust (if you'd like to donate you can do so here tinyurl.com/cn8prd5 anything is welcome as it supports this amazing charity).

July 13th passed this year with me, for the first time, not even thinking about the previous ten years which saw me move from struggling to stand upright, string a sentence together and being told to take an extended break from anything other than light exercise. My focus this year is conquering something else entirely, something I have been training for since October 2011, something I have always wanted to do but didn't think I could.

July 2002 was without doubt a life changing month for me. Very few people at 39 think they're going to die let alone come very close to it and then have to rebuild something that you took for granted before.

Then the bombshell from my neurologist that I would have to wait for the after effects to die down before I could even think about being a triathlete again. So the natural question 'how long do you think that will be'.........FIVE YEARS? Did you say FIVE YEARS? I swear you could hear the sound of tea being sprayed around the hospital (I had BUPA) as it dawned on me that no only had I nearly died, could barely walk, found making a coherent conversation difficult but it could be five years before I could take part in a triathlon again. Still it wouldn't be five years before the side effects settled down, I'd be OK and the neurologist said it they were still there after five years I was stuck with them. Ho hum nah I'll be OK.

You'd be surprised how five years goes by and I was still stuck with them, not too many details required but I can't eat chocolate without triggering a violent headache, I can't drink alcohol and I have Mollaret's Meningitis. I did toy with the idea of starting a support group for people that can't drink, I could start the meetings with ' Hi I'm Jonathan and I'm a non-alcoholic' but I'd only attract drunks looking for somewhere warm to sleep.

So I can't eat chocolate and I can't drink alcohol so what else can I do? How about find a way of completing 70.3 miles under my own steam in one day on my own without any outside help. Yeah that'll do it, clearly the VM had affected my mental capabilities much more than I thought. As my eldest daughter so succinctly put it 'You're going to celebrate dying by almost killing yourself' and ye'p that's pretty much it. So at 7.00 a.m. on August 19th 2012 in a river in Cambridgeshire I'm going to start a 1.2 mile swim because 10 years ago I couldn't even get out of bed, then I'm going to get out of the river and run (oh OK walk) to my bike, get on and ride 56 miles then when I get back set out on half marathon run. I know now that having waited five years to re-start my journey to fitness after another five years I'm going to do something with it even if I do end up staggering around and feeling very very tired. Full circle in ten years, not bad going that one, not bad going.....

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Jonad724 profile image
Jonad724
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6 Replies
kel80 profile image
kel80

glad to hear !! xx i was the same in april this year ... still can't walk loads , but after being re admitted after five weeks i learnt to except things are not going to go back to normal !!!! it's interesting as i thought i was just being strange i used to eat 3-4 bars of chocolate a day ... but now can't even eat two squares without pain and since being ill my saliva duct has been affected so foods that arent moist i find hard to eat also ... do you still suffer with memory loss? mine is so bad i actually forgot its my birthday tomorrow!! .... such an awful illness that i dont personnally think is well known .... i used to be able to take my 2 children around london form 9am until 7pm walk and walk but now half hour or less does me for the week !! x although i do push myself , but after another spell in hospital wished i was nt the type of person that feels i hav to ..x .. its refreshing to hear your doing so well now .. good luck xx

Jonad724 profile image
Jonad724 in reply tokel80

Thanks for your comment, I always think I am normal but that's because i've adjusted what my version of normal is and it has progressed from there. Sorry to hear you're having food troubles as well but you'd be amazed how quickly you get used to it. I also have memory loss but for strange things like people's names and directions to places even those I've been to many times before. My late Father used to joke that getting old causes two things: memory loss and I can't quite remember what the other one was :-). Its the same with VM and you're right about it not being well known especially amongst the medical profession but we are making progress I think. The next edition of the Meningitis Trust magazine 'Headlines' has a feature on VM (with me in it apparently, fame at last!).

I know at the moment you feel like doing anything is an effort but if you learn to work with your body and not fight against the illness it does get easier. It's a pain in the rear at first but I hope I'm proof positive that even after a very serious attack it is possible to do things that before I was ill I wouldn't even have thought possible.

So learn to work with what the illness presents you with in terms of tiredness, rest when your body says rest and you'll be improving in no time. It has taken me 10 years to get this far but it can be done. Good luck. J

daffodil profile image
daffodil

Hi Jonad -your story is inspirational -thanks for sharing!I will be 5 yrs on from bacterial meningiitis and septicaemai in Jan 2013.It very nearly took my life and I have had times when I have felt so ill and so frustrated with my limitations.It is wonderful to hear that for you,even 10yrs on you have made such amazing improvement and gives me( and Im sure others hope that,even if it takes many years we do make improvements.

You are right re viral meningitis - it seems to suffer from being taken somewhat less seriously,so I hope the article in next headlines helps to redreee the balance.I also think that hidden issues eg balance,memory,mood problems seem to be taken less seriously -whatever the meningitis cause?

best of luck with your triathalon - are you doing for charity,Can we donate/sponsor you?

Jonad724 profile image
Jonad724 in reply todaffodil

Thanks Daffodil, thanks for your kind comments I don't think anyone has ever described me as inspirational before so that's lovely, thank you. Funnily enough I'm doing the half ironman for the Meningitis Trust so if you'd like to sponsor me the link is here:

uk.virginmoneygiving.com/fu...

and all donations are very welcome to this amazing charity.

Incidentally my daughter who is a student nurse had a patient pass away today from viral meningitis which some GP's still think of as a 'mild case of flu then you recover' which is astounding really.

I really hope your recovery continues and assuming I can still string a sentence together I'll post a blog update in the week after the event. Thanks again, Jonathan

daffodil profile image
daffodil

Hi Jonathan,

Indeed you areinspirational !Often we don't think we are( or at least we are not purposely trying to seem so-does that make sense?) When you read other folks stories it not only makes you feel you are not alone,but also helps to keep us going,through all the bad bits post Meningitis.So much sharing is about the after effcets( and this is wonderful as this is what we need ) but it is great to read of how ill and disabled you were 10yrs ago and the improvements yoiu have made.So even if it takes a very long time,there is hope out there for us befuddled spinning tops!

The only general advice I was ever given after Meningitis was that everyone is different and that some make full and quick recoveries and for other it takes a very long time but you just have to go with the flow.Ihave found that the mnore I worry about my after effects and disabilities,the harder it is to deal with everyday living - but then it has taken me nearly 5 yrs to get to that stage!

Jonad724 profile image
Jonad724

Just a short note to say I finished the half ironman yesterday in 7 hours and 37 minutes, just under an hour under the cut off time of 8 and a half hours. A more full blog post to follow once I can a) walk again and b) string a sentence together!

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