Back in Black, a blog post about perseveran... - Meningitis Now

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Back in Black, a blog post about perseverance (or being bloody minded, you decide).

Jonad724 profile image
7 Replies

As veteran song smiths, AC/DC, said in their memorable song, I’m back and I’m back in black. For those of you wondering if I have got the wrong site then please bear with me. I haven’t posted here for a while but for those of you who don’t know my story here’s a little précis.

In July 2002 I developed the worst headache I had ever had over a period of 10 days. People commented that I was looking really ill and that I should go and see my GP if I didn’t feel better. On the 13th July my wife couldn’t wake me up and the next thing I remember is being taken out of the house by an ambulance crew. The day before I had picked my mother in law up and brought her over to ours and the last thing I heard before I was ushered out the door was my mother in law saying ‘well how am I going to get home now’. Talk about possibly missing the big picture.

Lumbar puncture, severe viral meningitis diagnosis and almost dying during the night followed in pretty much quick succession. Off work for six months, away from triathlon for 5 years (I could swim but not bike or run), left with an acquired brain injury, several after effects, intolerances to caffeine, cocoa, alcohol and phenylalanine (it’s in sweeteners in diet drinks mostly) and madder than Mad Max McMad who has just completed his degree in being as mad as hell. I wrote several blog posts about my experience just in case it helped anyone else recovering from VM.

Then in 2010 I was diagnosed with Mollarets Meningitis which I worked out after 3 years to be caused by stress. So stress triggers recurrent VM attacks but I can’t drink, eat chocolate or have coffee. Ho hum, onwards……

You might have noticed that I slipped in there that I was a triathlete when was taken ill and my fitness was credited as being the reason I rallied when I was ten minutes away from having my relatives called in to the hospital. My parents were told I was unlikely to make it through the night but they didn’t tell my wife, not sure why.

Fast forward to 2012 and I completed my first half ironman triathlon to celebrate being a 10 year survivor or as my daughter put it ‘you want to celebrate almost dying by nearly killing yourself’.

At that point I didn’t realise I had an undiagnosed double kidney infection and it wasn’t until I collapsed two months afterwards and was rushed to hospital that it became evident that I was in trouble. Infection was dealt with and I started training again, raced another half ironman in 2013 and all was well, well apart from aching all over and asking my wife to beat me with a shovel until I stopped saying I would enter the half ironman the next year.

It was shortly afterwards that I started to get recurrent kidney infections, then I discovered I had kidney stones in both kidneys and at one point I had four concurrent infections. I missed the 2014 triathlon season and entered a half ironman for 2015. All went well and I raced the triathlon in 2015 but was somewhat surprised to collapse when I got home after the race. Rushed to hospital and diagnosed with a single kidney infection. More antibiotics, lots of tests including one which involved what looked like a garden hose with a 1980s camcorder on it and a female medical consultant with a sense of humour failure. I had that many x-rays I was starting to glow green around the edges and the authorities wanted to put a Chernobyl style 100 mile exclusion zone around me.

In December 2015 I had a cancer scare when my PSA was found to be 9.8, so high in fact that the consultant said if I didn’t have cancer he would be extremely surprised. Cue consultant being extremely surprised but following an invasive biopsy I was found to have an e-coli infection. Just before the diagnosis came through however I was rushed into hospital with………..sepsis, bet you didn’t see that one coming! I spent the best part of Christmas 2015 in hospital.

2016 I thought, well that can’t get any worse. Ever heard the expression ‘smile things could be worse, so I smiled and blow me down, things did get worse’.

I had an operation to laser the kidney stones, six in total and was told that I would be ‘in and out in a day’. Well actually make that in and out in 5 days, it went wrong and I had a 2 foot long stent inserted in the wrong place which caused me crippling pain. So with the sepsis and operation which went a bit wobbly that was 2016 season dead and buried too.

2017: a year which had all the hallmarks of being a great one right up until I contracted severe pneumonia, sepsis and had bleeding into my right lung. I had run two half marathons (13.1 miles) one in March and one in May. After the one in May I started to get weird symptoms like my heart rate escalating on its own (besides from when I was looking at my wife, she has always had that effect on me) and feelings of hypoxia. My GP, ever the optimist, told me that I had a heart condition and that I couldn’t possibly have pneumonia because my oxygen saturation was at 96%. He told me to keep training and I did.

The symptoms became worse and the tests on my heart became more thorough but revealed no abnormalities. Not to be deterred my GP ordered a whole batch of new scans and tests all which revealed my heart was in rude health (not sure what polite health is though). In the end out of exasperation, and with my breathing so laboured I couldn’t climb a flight of stairs without a rest, he booked me in to be assessed at the hospital emergency assessment unit.

I was having feelings of déjà vu from my time with VM.

First a nurse listened to my chest and did my blood pressure, she then scurried off and came back with the registrar who listened to my chest, shook his head and went off. He came back with the departmental consultant who told me I was ‘very seriously ill’ and that I needed to start treatment immediately. It transpired I had severe pneumonia in my right lung and between my diaphragm and that it was pushing up against the lung causing pulmonary bleeding and a clot to form. ‘Look on the bright side’ he said ‘the pneumonia is stopping the clot from moving’. Every cloud.

I was admitted within 15 minutes and put on multiple drips, several injections and kept on close monitoring. Apparently the pneumonia had been present for 8-9 weeks and I had not only trained with it but completed a half marathon too. By training I mean several 40-50 mile bike rides and runs between 5-8 miles on a regular basis. Apparently I was ‘hard core’ and the reason my oxygen sats were so high is because I had been training and my cardio-vascular system was doing its best to compensate. So that’s the second time my fitness had saved me, if I hadn’t had been so fit the advice was I would be in intensive care and with limited chances of coming back out again, well who would have thought it. Oh and I contracted sepsis again just for good measure.

Back into training, all going well, entry for the 2018 half ironman of my choice completed and I come down with flu, a cold and then pneumonia again in February. At which point my wife said to me ‘are you still going to do half ironman races when you’re better’ to which my reply was ‘well yes’. This was followed up ‘well why don’t you just do shorter races because you’ve been so ill’ and I said ‘well, where’s the fun in that’. My somewhat bemused wife asked me if I ever listened to myself before I say these things and in particular whether I realised I was about to say something ‘really stupid’. She may have a point. My eldest daughter commented that ‘only her dad could be disappointed because he can’t suffer for 7 hours’.

So where am I going with this and why is there a picture of me in a wetsuit looking like I had just swum in a river? That’s because on August 20th 2018 I had just swum 1500 metres in a river and was on my way to collect my bike to head out on a 27 mile ride. Just because a triathlete is someone who doesn’t understand that one sport seriously is really enough, I then followed that up with a 7 mile run. Not quite a half ironman but having had three years away from the sport, to quote Waldorf and Stadtler from the Muppet Christmas Carol ‘it’s good to be doing anything again’.

What I didn’t mention, and I didn’t mention it to anyone before either just in case they tried to persuade me to give up triathlon, was that in August 2017, in hospital, the consultant told me that I would most likely never race triathlons again.

Winston Churchill once said ‘I fancy a cup of tea and a biscuit’ he also once said ‘when you’re going through hell, keep going’. Well I think I did.

So if you’re struggling to recover from VM and you can’t see any light at the end of the tunnel the moral of the story is, just keep going. Don’t let anyone tell you that you won’t be able to do something and if you want to do something badly enough you’ll do it.

It’s my privilege to be both a volunteer Community Ambassador and a Believe and Achieve Mentor for Meningitis Now and of course my sporting exploits are raising money for them via uk.virginmoneygiving.com/Tr...

Thank you for sticking with me and remember when life throws you lemons, throw them back twice as hard!

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Jonad724 profile image
Jonad724
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7 Replies
Amrita-A profile image
Amrita-A

Wow, that is something!! I have nothing to complain about (?). I am so glad you are here (meaning both physically on Earth and here as an admin to keep us filled with hope. Do you think the problems you had with your kidneys and lung and other infections are in some way tied in to the meningitis? Also, between 2002 when you first were sick and your diagnosis with Mollaret's, how many times did you have meningitis?

Your story is remarkable and what a lovely tribute to your wife in there. She is lucky indeed. You certainly have a way with words.

I hope your health troubles are all behind you now and it is smooth sailing or swimming, or running...

Amrita

Jonad724 profile image
Jonad724 in reply to Amrita-A

Thank you for your kind words 😊. I’m told that the infections and the meningitis are not related but may have something to do with a lower immune system. Between 2002 and 2013, when I worked out what was causing them, I was having 4 or 5 recurrent VM attacks a year. I also developed the intolerances over a 5-6 year period as well. I’ve been married for 32 years this year and I have the world’s most patient wife it has to be said. I really hope my health problems are over with too but I know that if anything else happens I am pretty sure I can deal with it.

Starry profile image
Starry

Congrats Jonad, you must be chuffed.

That is quite a story, you are definitely one tough cookie.

Interested to see you suffer intolerances. I have this too. All yours and lots more, all trigger very bad reflux. What symptoms do you get? Beimg a stomach thing I never thought to associate it particularly with the meningitis (other than i had vomited alot) i thought it more to do with my other condition. It happened maybe 6 weeks after leaving hospital.

Jonad724 profile image
Jonad724 in reply to Starry

Thanks Starry, with cocoa and alcohol I get blinding headaches very quickly after having it, people say oh that’s a migraine but I had those as a youngster and it’s not a migraine. Caffeine induces a sort of twitch/blackout sensation. I twitch and then pass out for a few seconds and caffeine or phenylalanine drives my waterworks nuts or irritable bladder syndrome as it’s better known.

I did suffer from reflux when running and my doctor’s answer was ‘well don’t run then’. I had indigestion tablets like ranitidine and they seems to ease it.

Hope this helps 😊

Starry profile image
Starry in reply to Jonad724

Thanks Jonad. Its a weird thing isnt it.

honeybeesweety profile image
honeybeesweety

Is this a viral meningitis site? There seems to be a lot about viral meningitis, but not so much about bacterial.... though the effects are much the same I think. Though I always thought my problems were just genetics or me being a pansy or crazy... lol, sure wish I could say I'd done all those great things... but sadly the more I try to get into better shape, I get worse... So the headaches and stiff neck and back pain and stiffness and sensations of being electrocuted (originating in the temporal lobe just like the headache)and the bulging head is that all "relapse" of meningitis? I had bacterial in 1988 I was 10 1/2 months old and had another scare (thought they thought viral) in 2004, but I never heard what the results were because they did a scan on me (MRI or CT) with contrast and I went into a "psudoseizure" between the scan and getting back into the wheelchair... They diagnosed me with conversion disorder because I was conscious while having the seizure... but conversion disorder they say only a small percentage will have a relapse within a year and an even smaller percentage will have another relapse or ongoing problems for the rest of their lives....I went seizure free for a year, then a couple of years then for 7 years and stress me at work and school and sleep deprivation and bam, seizures again, so they doc and Psychiatrist think perhaps it's from the meningitis and is epileptic in nature not psychological.... headaches are daily, but the real bad ones will last days or weeks and is always in the left temporal lobe with a bulging temple, sensitivity to light, nausea, screwed up neck and back muscles etc. does that sound like mollaret's?? And is Mollaret's possible with bacterial meningitis, or is it likely I got viral and never knew it in 2004, or is it just likely something else?? I have no insurance, full time student (over full time with all the junk I have to do)... I have never been seen by a neurologist and was told if I wasn't having a seizure at the time it was unlikely tests would be accurate....what's your experience with that and what do you suggest??

Jonad724 profile image
Jonad724

Hi, this is an all inclusive site for all types of meningitis although I think viral may be more prevalent than other strains. As far as I know Mollaret's is only known to be linked to viral meningitis and in particular the HSV virus although there has been precious little research so it is possible from other strains but may not have been proven yet. I do get seizures which manifest themselves in more of a twitch then a period of about 20-60 seconds where I pass out but I have worked out that this is caused by caffeine so if I limit my intake then they don't occur. The symptoms you describe certainly sound like Mollaret's although my friend @dreamgnome is more experienced in this area than me and may be able to help on whether Mollaret's can be caused by BM as well as VM.

I think from what you are saying the causes of the seizures are stress (this triggers Mollaret's attacks for me) and lack of sleep so maybe you have answered your own question about how to avoid them? Stress can be managed, I have to do it otherwise I'm down for 2-4 days with a Mollaret's attack and sometimes limited use of over the counter sleep aids can help with the sleep loss assuming you are going to bed at the usual time and just not sleeping.

I hope this helps.

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