Covid or MeningItis? Take your pick....

[Bellesmom12]

Ok, as an unfortunate member of this club, I would just like to say that I would take Covid any day over another round of meningitis. After 1 1/2 years I am still struggling. Living, yes, but every darn day is a struggle for normalcy. Covid is awful, yes. I pray I never contact it, but at least there is and end to it and the professionals try to understand it and find a cure. We meningitis sufferers are not understood and kinda left out there by ourselves to blunder through and talk about it amongst ourselves. With meningitis, it is what it is, a day to day struggle with no real answers and no one understands. You just gotta deal. Anyway, off to work I go. No idea what spurred this post.

[kalirachi]

I quite agree. The most frustrating and frightening aspect of trying to recover from VM is the thick wall of total ignorance and denial from the medical profession. When you are struggling to get through each day hoping the next day will somehow be better and then discovering there is no help available and that you are totally on your own is one of the worst aspects. With so many of us going through this it seems almost incomprehensible that doctors and neurologists are so unaware of what people are going through and trying to explain just labels you as some sort of malingerer or hypochondriac. It seems to me the best the greatest experts in the country can come up with is anti depressants. Trying and being completely unable to work and run what was a successful business really compounds the issue particularly when those around you keep telling you you look well enough and are much like doctors in been unable to understand that you really can't function due to a whole plethora of debilitating after affects. It is really quite shocking that in this 21st century the medics are not just ignorant but arrogant as well. How many of us have been told that after a few weeks rest we'll be right as rain only to find we are still enduring this constant suffering months and years later. Sorry not to be more upbeat but this is how it is!

[Jonad724]

As a survivor of near fatal VM and also severe pneumonia with complications (sepsis and blood clot on my lung) I'd prefer neither as Covid-19 (as with severe pneumonia) can leave long lasting and debilitating after effects. As Covid-19 is a form of viral pneumonia it is a lot like VM and the majority perception is that it is a mild illness and most people are better in a few weeks.

[Bellesmom12 in reply to Jonad724]

Yes, but at least health care professionals and the general public acknowledge the existence of Covid. With meningitis they just expect you to be fully recovered. Everyone thinks you look ok so you must be ok. I CONSTANTLY shake inside, my mind is foggy and I am still trying to work at my office like before. I cannot make decisions as simple as which item to pick up or lay down. This is definitely a brain injury and in a very intelligent and active person it is highly frustrating. I fake it EVERY single day. Plus, my patience level is zero and I snap at people all the time. I was never like that before. I would rather have an illness that I could put my finger on the physical complications rather than the mental. I make mistakes at work because my hand shakes and I move my computer mouse so jerkily. People think it is anxiety. I don't pity myself but I do hate how people see me now and think I am nuts.

[Jonad724 in reply to Bellesmom12]

I absolutely agree with you, my experience of VM was very similar to yours and it has left me with many after effects which I have learned to live. My point was though that people think that Covid-19 for most healthy people is a mild disease, there is no pathogenic signature which says it will or it won't kill you.

If you read my blog posts on here then I hope you will find some similarities too and hopefully find some solace that it does get better. Despite all VM did to me, all the fights I had with the medical profession and being left with Mollaret's Meningitis (or recurrent aseptic viral meningitis) I have still completed three half ironman triathlons, run 3 half marathons and quite a few shorter triathlons too.

I'm a volunteer community ambassador for MN and part of that mission is to try to make sure that no one else had the same experiences of VM that I did. With no online support like this group and a long recovery, despite being told by my GP I was better and was just 'malingering' even though I could barely walk and talk, it was a very dark and lonely place.

[Quiltergirl in reply to Bellesmom12]

I had bacterial meningitis January 2019. I am a Registered nurse. I knew my brain wasn't right, memory and concentration problems. I finally complained enough to get a referral to a neurologist. I had a MRI and a cognitive exam. I have a delayed memory deficit and there were "hyperdensities" in a few ventricle in my brain . Yes all that infection circulating my brain caused some damage. I am officially disabled now. I live in the US.

Keep telling your primary physician about your cognitive symptoms. We need to advocate for ourselves.

[MNClaireD Partner Meningitis Now]

Hello Everyone,

For anyone living in the UK who is struggling with recovery or the ongoing impact of meningitis, please remember that Meningits Now can offer you support and information: meningitisnow.org/how-we-help/

If you live outside the UK, you may be able to find a meningitis organisation in your own country using the following link: comomeningitis.org/find-a-m...

Best wishes,

Claire

[Veba]

I hear you. Those that have never experienced the excruciating pain will never understand. My first encounter was in 1986 viral encephalomyelitis I was wondering did you ever have a really bad flu, or measles or maybe a nasty mosquito bite at anytime? Have you had the copious lumbar punctures?

[Bellesmom12]

Nope, never, ever had the flu or anything. I did have a nasty sinus infection during the month before I got meningitis. No lumbar puncture until they used it to diagnose me.

Just wish my brain fog would go away. I have no idea what I am talking about half the time. Awful case of Tourette's syndrome. Whatever is is my head comes out my mouth. Then I feel bad .

[Vale1234]

Hello, i feel less alone on my journey by reading all your posts. I wish to thank you for this. I got VM exactly 4 weeks ago. I have been 3 days in ER and of course they tested me for Covid, which was negative. The diagnosis was VM. They could not figure out the exact virus and this increased the level of anxiety. Doctors told me that the protocol is to exclude the "main" and most "dangerous" viruses and they also dismissed me from ER with pain killers telling me that everything would be back to normal after few weeks. Now it has been a month and i still have headache and strange feelings on my body like intermittent slight pain all over (arms, legs, feet). Now, I am not a doctor and of course i tent to trust what they say, so try to imagine, you hear that "everything will be back to normal within a few weeks" and this is not happening. What is the result of this? Panic and anxiety, obviously, and constant fear that something worse will happen or that the meningitis is the result of another serious condition. I am seriously struggling with all this situation, and worse is this feeling of being left alone by the medical community, fighting with something you don't even know. I looked on the internet and there are always the same articles and readings about VM. I know the story by heart in the three languages I speak. But there is literally nothing about the VM long-term effects. It is frustrating, and yes, depressive.

[Bellesmom12 in reply to Vale1234]

No, everything is not "back to normal in a few weeks". They have no clue. Just keep going and try not to succumb to the anxiety. Everyone is different. It depends a lot on the extent of the damage and what part of the brain was effected. At least that's my conclusion. Just rest and do what you can. Sometimes I just have to be quiet for a while to settle down. That is very hard considering I am still working. Sometimes if I can get my mind off it I feel better. Stay around positive people and talk about anything.

It is a hard journey and you WILL get mad at times, even though you are grateful for your successes in healing. I couldn't drive or even read at first. I am 1 1/2 years past finally being diagnosed (it does not go away in 7-10 days) and probably at 80%. I have my moments when I despair, If this darn shaking and brain fog would go away I would be able to ignore a lot of the other side effects.

God bless you. Fake it til you make it. That's my mantra. You are NOT exaggerating or a hypochondriac but no need to tell people. Only people on this forum will get it.