Is anyone else disheartened by the fact that when asked what type you had

[kel80]

I am getting extremely disheartened by people who ask which type you have had, isay vm they say oh not the serious one then!!! It frustrates me so much ... I had suffered soooo much pain and darkness my family went through hell , I still suffer greatly and they say oh it's only like the flu!,,,, why VM is still a horrible illness .......

[Gra661]

Hi Kel80

It is a little disheartening it’s just unfortunate that the great majority of people do not understand what we have gone/going through. I've had similar reactions but to both extremes "oh it’s only like flu" and "you're lucky still to be alive". It’s not a cold or flu that disappears after a couple of weeks it’s an illness that affects your life and everyone around you.

Trying to explain is even worse as the interest tends to wane after about 2 minutes because you weren’t fighting for your life and because you are back at work so everything must be back to normal fully recovered and we know that isn't true. It was January 2011 for me and the after effects still to some extent affect my life, but they are reduced compared to what they have been.

It's been a long road on that way to recovery, employers for example do not have any understanding or perhaps they don't have the time to discuss it. The prime example was at my recent appraisal when my illness was described as when you had those couple of weeks off work when you were unwell. Words fail me when I talk to people like that, it’s unfortunate that you end up talking to that "brick wall" nothing will penetrate it. It's not their fault though they just do not understand. One of my managers I spoke to last week didn't realise how much the after effects had affected me and didn't believe that I'd had a constant headache always with me for over two years he at least turned out to be more sympathetic.

I've been described as many things from someone who is not quite right to having early Alzheimer’s not labels that I appreciate at all and these opinions are from so called friends.

We all know that VM is a horrible illness and can and does take a long time to recover from, but we are still here. The toughest job that we and The Meningitis Trust have is making people aware of meningitis and all its forms and trying to make the general public understand it.

I’d love to talk to people and let them know of our experiences, it’s the only way for the public to find out. Perhaps one day soon I will eventually write my full experience as a story and along with others try to support those who suffer.

Good luck with your recovery.

Graeme

[kel80 in reply to Gra661]

Hi x Thankyou for your reply xx it's nice to know I am not just paranoid xx good luck to you too xx

[Tiga]

yes it is a shame, BUT to be honest before i had VM, i to was one of those people that new noting of this cruel illness, and now i seem to be a walking book about it. BUT i thank god i am not missing any limbs, or passed away, so i can explain to people about it, and help other people to this site.

so honey do not worry if people do not know, i bet like me you did not know to much about it until it hit you like a bus, it may not seem it but we are the lucky ones, i know some families that have lost love ones due to BM illness.

so keep you chin up hon, each day is another day you are here to tell your story, and the more stores and help we give on this site, the more newbies will know where to come and get guidance and help, and family and friends can read to help educate themselves, as well all know on this site the illness did not just affect us, but are loved ones, its been 2 years for me, and my mother is just getting to terms, that i have changed in someway, the happy go me, is not always the case.

but i live on each day, and think, up yours VM, i am still here, and LOL also up yours heart opp last year, if VM did not kill me so a heart opp would not, KISS ASS VM,

[kel80 in reply to Tiga]

Haha xx Thankyou xxxx yes you are right I didn't have a clue about vm ... But just people with stupid comments makes ya paranoid your over reacting

[Tiga in reply to kel80]

Never think that, the cruel truth is- if we (god forbid) had a car crash and was left with scares people would see the after affect, i am dyslexic and you can imagine the reaction i get - can you catch- or they start to talk slow to me- i tell them i am dyslexic not stupid LMAO

[Sandy2]

I came down with VM last September, and thankfully that was " all it was" because it was horrible enough! The virus attacked by body , went to my lungs for pneumonia, then my heart for an infection, my sodium levels were dangerously low, potassium levels too low, heart rate too high... HORRIBLE headache, in the hospital almost two weeks, and recovery more than 9 months!!! I lost 20 pounds, have short-term memory problems ( which are improving) was super sensitive to noise and over stimulation, and I tire easily. If someone hasn't experienced it, they can't understand. You are not alone.

[Tiga in reply to Sandy2]

Know what you mean Sandt2, my mates call me the vampire , as i can hear a pin drop, and sun light can be a killer, plus i seem to be able to smell scents more then norm's LOL which is not always a good thing ha

[kel80 in reply to Tiga]

Oh god and you are post vm for several years?..I thought that would go after a year or two .. It drives me insane to the point I sometimes hate going out .. Sunglasses in rain .. Get weird looks .. People talking I look at them as if to say be quiet and the smell ... I can smell tooo much lol

[Tiga in reply to kel80]

only to odd side effect over the last 2 years, nothing i cannot laugh at....Sunglasses in rain .. Get weird looks.. hell sun glasses in the rain is a cool look hon, who wants to look like every one else, i have now moved on to tinted glasses, i am rocking the new look LOL

your to polite when people get to loud LOL i just say, indoor voice please haaaaa

Yes smell, i now have super human powers now, i know what they have ate or drank, ok garlic not one of the favorites. think i would now make a good sniffer dog haaaaaa

[kel80 in reply to Sandy2]

Hi xx almost exactly the same as me ... The lasting symptoms just drive ya mad xx Thankyou I was starting to think I am becoming a hypochondriac

[Tiga in reply to kel80]

bl### hell that's a posh word hypochondriac, LOL been one of those for years, my family think the same about me, 1st VM, then following year same month had to have a heart opp for (SVT), and then bugger me same time this year had to have 4 opps in my mouth, thou the good thing was the dentist gave me a kids sticker after each opp, as i was a good girl (LOL) well little things in life that make you laugh stop you going nuts, BUT joking aside you are not a hypochondriac, as i have said in many post replies, god forbid, but if we had a car crash and was left with scares that people could see, then we would feel better and the none VM would understand are moods or in my case sulking, i look at is, well VM, you knocked me down and jumped on my head none stop, but HAY HOOO look i am still here so up yours and when i get a dark VM mood come on, i spray vanilla on me, it makes me feel calm. getting the feeling i am not a full normal haaaaaaaaaaaaaaaaaaa.

you are doing great mate, you are on the this site which shows you are now staring a new path, you can talk to others, and feel part of a group the VM group .

V for vagility ....meaning ability to succeed in the struggle for existence

M for malacophonous ........... soft-voiced (as noise hurts us LOL)

Thank god for google and spell check haaaaaaa

[Jonad724]

In a word yes, in fact I wrote a blog post about it on this site called 'oh no it's angry Dad'. What annoys me even more is that in trainng, doctors are told that VM is not serious which is probably why I was discharged from hospital after three days after coming very close to death the day before. I was rushed back in three days later with blood pressure which meant I wasn't technically alive and collapsing veins. It is just an education process I'm afraid.

[Tiga in reply to Jonad724]

Doctors are told that VM is not serious- maybe fate will give them VM to try out hell just for one day, and see if they think it is not serious

[Disenbarger]

It seems the interpretation by many is having VM is similar to meningitis but not actual meningitis. I had VM a year ago and still have short term memory loss and very easily become anxious.

[Tiga in reply to Disenbarger]

I am now the note girl, you name it i write a note, and when i forget (like the other day could not use my mobile phone, i just sat down and thought oh well another brain fart) this makes myself laugh, then i am not anxious any more

[NorthLeedsJohnny]

I can identify with all that has gone before. I had VM in Nov 11 and still have lingering side effects. The worst is quite pronounced hearing loss in my left ear. An audiologist said that the illness probably cut off the blood supply to my ear. It probably won't get any better. I also have quite loud and constant tinnitus. A reduced core temperature is added to the list too. Usually 37, it's now between 34.5 and 35. Being easily startled has also been with me since leaving hospital. There is a light at the end of the tunnel! Meningitis UK have selected me for a pilot project, to see if cranial osteopathy helps in any way. I've completed a before questionnaire and am waiting for details of the 10 sessions being organised for me. It won't be over for several months but I'll let you all know the outcome!

[Gra661 in reply to NorthLeedsJohnny]

I too am one of the lucky ones on the pilot project except that I will be receiving acupuncture. 10 treatments over 3-4 months to see if it can relieve my constant irritating companion of a headache which I've had persistently for over 2 years. I too will let everyone know how I get on.

[kel80 in reply to NorthLeedsJohnny]

Hi xx snap with the hearing ... And snap with the cranial lol xxx might see ya there x

[paul1224]

HI boys and girls i had BM in november 03 and still suffering with sll sorts of things i will not bore you with the details,but to say i was put in a wheel chair by it

and almost deaf 3$in left ear total deaf in the right I have taken to wearing a badge saying i am deaf and people think your a idiot Yes please bore people about vm and bm out there its the only way to get across to people

As my doctor reminds me every so often that i died twice and still come back to haunt her

Do not let people put you off or down ,what ever sort of M u get it is bad i know every one is different but we all have to go through it and so do our families I lost a lot of friends when i had it and i for one don't care if they don't want to learn what it is like thats up to them some people just want to bury the head in the sand

good luck to all and i do hope every one every day gos the little bit further to recovery never give up

paul

[kel80 in reply to paul1224]

Ahhxx Thankyou xxx I hope your on the road to better recovery x

[Tiga in reply to paul1224]

well said paul

[tjandaksmama]

Hi everyone! I had VM July of 2012. It wasn't any fun. I'm doing much better now. I never thought I'd be me again. I think I'm done for the most part with aftereffects (knock on wood). I'm Actually going back to school in a few days, I'm 37, it's been awhile lol. I'm worried most about my memory, I hope everything works lol.

I know what you are saying. I have not been able to find much help in the US. I found a group to join because i just wanted help get the word out. I was told I couldn't because it was only for people that had BM.

I gotta say, that hurt my feelings. But know what? Their loss! I would been a great volunteer! I just do the best i can to educate those around me.

Paul way to go! sounds like you would be a great person to know. Actually you all do. We are survivors. Sure we come out a bit different but we are here. Somedays it's not easy but we get thru.

My mantra used to be "it is what it is"

Now it's "it is what you make it"

I'm doing my best to make it the best i can.

Good luck

[kel80 in reply to tjandaksmama]

Oh no that's not good xx bm or vm we should help each other xxxx

[shuggy]

VM is not given the credit it deserves. Try lowering your expectations to people's responses. They truly do not know any better. I have only had one physician (united states) show true concern over having VM and we have seen so many. My girls also had temporary hearing loss. We all contracted VM at the same time. My health is still deteriorating. But I will get better!!! Best of luck to all of you. Go easy on the general public. They really do not know any better.

[kel80 in reply to shuggy]

Hi xxx the worst thing is its work colleagues and so called friends of friends etc xxx I am the same I am determined I feel I am deteriorating a lot but then also think I am over looking

[Gra661]

Well hello looks like we have all woken up!! congrats to Kel80 for posting such a simple question and to us all for responding, it woke me from my slumber. We are all here for a reason yes to moan and groan and express our own difficulties with after effects but it is the comfort of this forum to help each other along. I think by now that i would have been in the funny farm long ago without it.

The answer is I suppose that yes we should all take the chance and bore people with our experiences as Tiga has already said let our doctors experience it just for a day and they will soon find out what we are talking about and suffering from. It's the only way forward if we stop talking about it no one would listen.

Lets keep Talking!!!

Graeme

[kel80 in reply to Gra661]

I agree. X I would be so lost and even more depressed then I am at times without this site xxx Thankyou all so much x

[Tiga in reply to kel80]

we will always be here for you hon, and you story will help others, its like a circle and we are all part off it, GOSH thats a bit Buddha for a saturday night LOL

[rowenafly]

Hello all, yes I have had the same thing in Australia. Noone knows much about it. Some people understand that its very serious. But many say things like' oh its all better now isnt it...' I dont reply. I am 10 months post viral meningitis and have had some chronic conditions from it. All the same as you all, not the deafness, but depression, fatigue, headaches etc. I also have central sensitisation of the central nervous system which means your brain reads pain at a much higher volume. Wow, thats fun too. Hmmm. I suspect many of you have similiar condition as VM resets the brain in a way. I had a whiplash injury three months ago and the result was intermittent extreme pain, off to emergency in the early days and a weeks worth of morphine. That type of thing. A pretty extreme overreaction. However, I have found a musculo skeletal physican expert who is helping it with endep and prednisolone (very evil drug). The one key thing he said is to increase your cardio exercise in a very smooth fashion. That means no jarring radical movements. So stationary bike riding, walking on treadmill. I am upto doing 45 min a day. Very carefully. So I dont know if that helps anyone, but if you are having over sensitization to pain and stimuli, look up Central sensitization, and particulary the website by Dr Lorimer Mosely, bodyinmind.org, they are experts on chronic pain in people across all areas. Might help you understand some of the processes. One thing in particular about the exercise, is that the chemicals it produces in your body start to overide the pain mechanism. But it should be done very very slowly. I started at 10 min on the bike. I was really unfit. The book Dr Lorimer wrote is called 'Explain Pain'.

[paul1224]

hi all again

yes we need this i think we all agree on that

we all have different problems caused by VM or in my case BM

I thank god for the trust they have helped

I don't

know if other countries around the world have the same support system

i do hope so

from a personal point i would also like to thank all the people up and down the country that raise funds for the trust ever penny given is a help to some ones life and i think they all need a big thank you and a pat on the back for there support

yes this sight is great for people to pass on and talk about the affecter affects of M but what does make me smile is when i go to my doctors the amount of posters aimed at parents with young children on the subject i was 47 when i had it most people don't know u can get it then but i try to put them straight lol

i would be very interested to run a short poll on what age people got either vm or bm

sorry boys and girls cant offer any prizes lol

but if u feel like adding any thing i am sure it will be well received

a new slogan

Bore People

thanks for reading my ramblings

[Dynomite]

Hi M friends!

I knew nothing about meningitis until I got out of the hospital after having BM. But after reading stories here on the Trust I don't think there's much difference between B and V, other than the cause. Most of us suffer the same issues, not all the same as all cases b or v seem to vary in symptoms. I'm glad we can all come together here and share and try to help and uplift each other. I too wish we had an organization like this in the U S.

C

[recovered7]

Hi Kel80,

I feel exactly the same as you.. I have had two bouts of VM so know only to well what its like. I haven't worked now for two and a half year's, and I used to be a Nurse. Feel as though my intellect has disappeared, can't even spell properly some day's. Was also studying Psychology but do not have the confidence or ability to study. People say the same to me , that it was only VM, not so bad. Well it is bad to varying degree's. Each case is different, and we all cope in different way's, just as some people will have VM in various degree's of seriousness but still suffer from a serious illness. I am now 3 year's on from my second bout but still fear another, and every severe headache i have sends me into panic mode but i think after two bouts this would be a natural fear which i need to seek councel on in order to overcome this anxiety. Has anybody else suffered this on two occassions like me ???