Boy Did Reg Dwight Get it Right......... (More musings from your grumpy old Viral Meningitis and Half Ironman Triathlon Survivor)

[Jonad724]

when he sang 'it's sad, it's sad, it's a sad sad situation', yes its that time of year again when the Lumie bright light comes out and I try to stave off the attacks of being an even more grumpy old man than usual. Mind you if our Reg (or Elton John as he prefers now) thinks sorry is the hardest word he clearly hasn't tried writing antidisestablishmentarianism. I'm not sure if I had seasonal affective disorder before I had viral meningitis because I can remember at least two Christmas holidays when I was hardly the life and soul of the party but certainly the diagnosis of SAD was made after I had a serious attack of VM in 2002. As I also have mild photophobia as one of the side effects of the attack which nearly killed me (so I don't like bright lights) I can picture VM saying in a Bugs Bunny voice 'ain't I a stinker' and it would be right. Just when you think you can say I can manage the symptoms and I can stick two fingers up to an illness by completing another half Ironman triathlon this past August (see how I managed to slip that in there, good eh) it has another trick up its sleeve. Let's give him a side effect which means he has to have a bright light for at least 45 minutes a day whilst also making it as painful as possible.

Am I down? Well no because I have the bright light for 45 minutes each day but it adds fuel to the argument to train the medical profession that viral meningitis is not like flu which is what I have been told by a number of doctors is what they are taught in training. Granted flu can also kill but very few people end up with permanent side effects from flu like short term memory problems, intolerances that appear from nowhere (Cocoa, alcohol and fresh orange juice, so that's a Chocolate Bucks Fizz well out of the window), Mollaret's Meningitis, permanent headache and one or two more. If I hear one more doctor say 'well you shouldn't have all those from viral meningitis it's only like flu' I'm going to take my Lumie lamp and shove it where the sun will shine once I've inserted it!

Still as Vice Admiral Lord Nelson is now prone to say 'Some days you're the statue, some days you're the pigeon, well mostly the statue these days to be honest but you get the gist'. As winter in these fair isles draws in, the clocks go back and I sit in front of my bright light with my eyes exploding, I can look back on the previous months with some satisfaction that it has been the best year yet since having VM. My eldest daughter got married in August, I completed the afore mentioned half Ironman a week later (I was banned from training or racing in the lead up to the wedding in case of injury because of my duty to escort my beautiful daughter down the aisle but as I pointed out I don't have to train for a wedding but I do for a 1.2 mile swim, 56 mile bike ride and a 13.1 mile run, now I know what 'falling on deaf ears' means). I qualified as an International Triathlon Union race official, officiated at the World Triathlon Championships, won Regional Race Official of the Year for Triathlon England and with a fair wind will also soon be Chair of the Triathlon England Eastern Region. Before anyone asks; yes I do have the world's most patient wife and family. So whilst VM might be a 'stinker' and I will spend the winter in paradoxical pain for 45 minutes each day I can say to myself; (with apologies to Winston Churchill) never in the field of kicking the backside of an illness was so much achieved over so little time by so few. So if you've recently, or not so recently, had viral meningitis and you feel life is a struggle, take heart it does get better and that coming from a grumpy old man is some statement, I can tell you.

[siobahn]

Well done u luv it !!!!!! What a wonderful piece of magic to read first thing.........

X

[Jonad724 in reply to siobahn]

Thank you, you're too kind

[Meningitis2011]

I had vm in 2011 and 2012. The first two times were a little less than a year apart. The second and third time were about three months apart. Ever since I have had more problems than I can name. Woe is me. But I like to keep active because it keeps me from thinking about my problems. I am 77 years old and I would like to live to be as old as my father was when he died at the age of 102 ( maybe even older) .

[Jonad724 in reply to Meningitis2011]

Hi, I sympathise, I suffer from Mollaret's which is where the VM recurs periodically, two attacks so far this year and five or six episodes of being pre-Mollaret's when if I take pain killers early enough it slows it down. Keeping active is definitely the key, triathlon at the distances I do is so long you have to think about so many things it stops me worrying about anything else. My original attack nearly killed me so I'm grateful to be around even if it is a life more limited. Hang in there and stay strong, if you get more attacks of VM I would strongly suggest you seek medical advice as it could be Mollaret's and from there it is possible to track attacks and triggers which helps to put you back in control. Good luck.

[rbwazmotown]

Hey great post. I am in my third month after initial LP telling me I had VM. What a son of a b_tch this illness is. It is awesome that you are running the Iron Man events. One of the side effects I have had is extreme joint and muscle pain to the point that I cannot get out of bed without at least 4 advils in me prior. You're right about doctors not really knowing how to treat VM and telling you it is like the flu. I get that all the time here in Arizona. I am wondering how long these side effects/symptoms will last. I would like to fly back home for a visit but feel I might not handle the plane ride with these headaches. Thanks for the great post!

[Jonad724 in reply to rbwazmotown]

Glad you enjoyed the post. As you know its difficult to say how long the side effects and symptoms will last, I was in bed for 6 weeks after the first attack and had to learn to walk again so I understand the whole joint pain issue. I found its easier to adapt what normal means each day and go from there rather than try and get back to what normal meant before. I live with the side effects every day but as I hope you can see it isn't a death sentence and so long as you listen to your body and rest you should make progress. Take care!

[rowenafly in reply to rbwazmotown]

Hi there. You said you had joint and muscle pain. Me too after vm. I found a muscular skeletal doctor who diagnosed it as central nervous system sensitization. He was correct, as the drug he gave me(ampitryptaline) at night and the exercise program he prescribed has stopped it. I did cardio vascular exercise to. Improve it. Now been doing it for 7 months. I can ride, swim or run/walk for an hour straight. Maybe 5 days a week. It's been hard but it stopped the pain. Look into it in case it might help you.

[Jonad724 in reply to rowenafly]

Thanks, I was prescribed amitryp as well but I reacted badly with it so can't take it but glad it worked for you.

[Hidden]

Thanks for your post and very well done!

[Jonad724 in reply to Hidden]

Thank you!

[menigitishead]

Spinal Fusion 2006, half marathon 2007. (and a few mudd events inbetween).. Hole in my head caused Bacterail Meningitis 2010. (um no doc.. it's not allergies.. it's spinal fluid dripping from my nose for yesr 1 1/2) Convinced a trip to the dentist caused my BM.. (why does that always sound so funny to type.. BM). yeah.. now I get stuck with water on the brain.. idiopathic hydrocephalus. To celebrate.. it was Tough Mudder 2012, Dang hole. came back along with a herniated brain.. resulting Brain Surgery 2013 to close hole in my head to ensure I won't have BM again and I only lost a P size of my brain....How many of here on this site can say they lost their minds for real. I am sensing a recovery theme here! 2014 hmmm.. can't run at the moment, but maybe a century bike will do the trick. Stay positive folks.. it's our best defense.

[Hidden]

Plenty of support and positivity on here!

[cat3]

Sorry Jonad, only just seen your post. I had viral meningitis in 1983 but never heard it compared to the flu. I remember my GP treating it very seriously and calling for an ambulance. I was given a spinal tap, which revealed shingles on the brain, and being made to lie flat for 24 hours in darkness. I was treated with morphine and steroids and stayed in hospital for two weeks.

I also had a recurrence the following year but,on that occasion, it was less severe and subsequent ones were indistinguishable from migraine attacks. Unfortunately there were more 'from up the sleeve' tricks for me also, with the advent of breast cancer in 2009 then the SAH in 2011. Maybe I was really wicked in my previous life !!

My VM obviously wasn't anywhere near as severe as yours, as it's now just a distant memory, but I sympathise wholeheartedly with the SAD, it's been the blight of my life and I, also, am dreading the clocks going back.

So it's time for me to begin some long-running project which will distract me from the darkening days............the bathroom needs a make-over ...............

Good luck and best wishes to all who are 'whistling in the dark'......................... Anyone know any good jokes ??? xx

[Jonad724 in reply to cat3]

Thanks Cat, I think the one thing VM makes you is a suvivor, it changes lives but makes us stronger in the long run I think. Jokes wise.......a woman takes her duck to the vet suspecting it might be dead but not wanting to accept it. The vet says to her 'I'm really sorry but your duck is dead', the woman not wishing to accept it asks for a second opinion. The vet opens the door and in trots a labrador who then promptly sniffs the duck up and down then lowers its head with its eyes down, sniffs and walks away. Still not convinced the woman asks the vet for another opinion and the vet opens the door and in walks a cat. The cat jumps up on to the table with the duck and slowly walks up and down shaking its head. The woman finally accepts that her duck is dead and walks to the reception desk in tears grieving for her duck. The receptionist says 'that'll be £150 please'. Rather shocked the woman says '£150 for telling me my duck is dead, I thought it would be cheaper than that'. 'Well, says the receptionist, if the vet tells you then it's £20 but you asked for a lab report and a cat scan and so its £150. Boom boom

[cat3 in reply to Jonad724]

Thanks for that, jonad. You obviously have a great sense of humour and the duck joke DOES have the desired effect.............brilliant !! Me now = xx

[Jonad724 in reply to cat3]

Glad you enjoyed it

[becca823]

Hi Jonad

are you still on here ? I like your attitude on this. I am 2 months since being hospitalized and diagnosed, mistreated , misunderstood and down right irritated with the lack of knowledge and treatment in the medical field. This bullshit vicious illness has brought me down hard and I have decided it "aint gonna win" How are you feeling? Im obsessed with learning of anyones experience with any type of meningitis. I am going to educate myself and learn as much as I can so I can help others as well as get involved with raising awareness.Are you in the US?

[Jonad724 in reply to becca823]

Hi Becca, yes I'm still here, and now training for my fourth half ironman next year 😊. I was going to do it this year but I had sepsis at Christmas and then two kidney operations which slowed me down a bit. I'm in the UK but happy to help, if you send me a message on here I'll happily let you have my email address. I still have the odd tired and worn out day and my Mollaret's is, I know now, triggered by stress so it's either become a zen like monk or spend my life with all the joys of recurrent viral meningitis. Still I have much to be grateful for and I'm now a grandpa so I have much to teach grandson in the ways of being a grumpy old man when his time comes😂.

I still have my sense of humour too such as.....I went to the park last night to play frisbee with my dog, it was hopeless, I'm going to need a much much flatter dog!

Hang in there and as I say I'm more than happy to help. J