Meningitis, two years later and steady prog... - Meningitis Now

Meningitis Now
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Meningitis, two years later and steady progress, I live in the UK

Landlord
Landlord

I have been to the extent of talking to the people and nurses that run this site, there response to my story was they thought it was incredible and I should try and share it

It all began when I was sat at the bar of the pub I own with a friend, we were talking about where a lager was made, so I to the bottle and tried to read it, I couldn't, I have 20/20 vision to the point I could read the manufacturers name on the letter board during an eye test,

We ribbed each other as you do and forgot about it, the next day I got up to go to my day job of building, all no problem, I then phoned my wife around ten o'clock and after a moment or two she told me to stop talking, I didn't understand why, she told me my speech had gone to gobbledygook, she thought I was having a stroke, I just laffed it off.

Around 11 o'clock I had an odd head ache start ( I never get head aches) . At 12 o'clock I was fitting a pipe in the wall an some how ran a knife through my hand, off to hospital I went and got my hand stitched up , I returned back to the job by which time the head ache had become worse, I call my wife and told he I was going straight to bed when I got back to the pub and didn't want to drink with anyone, by the time I got home my head was so bad, I hot undressed to go to bed and it was then I saw the rash on my right leg up to my knee, at this time I was on medication for pneumonia and after reading the instructions that night I was annoyed to see they cause a rash and to see a doc immediately, but it was to late in the day so I waited instead.

During the night my head got so bad I couldn't sleep so I took steroids that I have prescribed for self dosing for gout, these things are brilliant, they did nothing.

By the morning my head was so bad I thought it was going to explode, when I got out of bed the rash was on both legs now and up to my knees, I could barely walk, talk, see anything, I thought it was the pneumonia tables so we got to the doc's at 8 when it opened and was seen straight away, my bp was 180/135 and the rash getting worse. The doc told us to go straight to hospital and if I passed out then call the ambulance at that point because it would be the fastest way to to get help, I then spent three weeks in hospital, initially being treated for bacteria meningitis but ar day ten they managed to do a l-p with the use of x-ray, this was the tenth attempt, at this point the found raised protein in my spine which indicates virtual meningitis so was then treated for that.

So much stuff has gone in since the hospital but the biggest things are,

My speech has changed,

Memory loss is not good,

Lots of body pain,

Muscles not working

Locking joists

Head pain

neck pain

Loads of stuff

But apparently no one knows why,

I now have lost of medicine but my main tablets are to suppress my nerve system which help very well for about two weeks at a time and then the pains and problems break through

It's life changing and although two full body mri scans show nothing, neurologist tell me I may never work again.

I do what I can every day and try and manage the pain.

There's so much more I could say but as you can see, it's long enough

My biggest advice to anyone about this is to watch out for mental health, thats the secret killer of the survivors

3 Replies
oldestnewest

So sorry to hear how poorly you were and that your recovery is still slow. I empathise as I had VM 2.4 years ago. Same features as yourself with speech, the worst headache of my life and stiff neck.

I too I have struggled to recover. I have had a very over sensitive CNS, problems with photophobia, left sided numbness, pressure in my lower spine. Last year the neurologist suggested it was now functional neurological disorder as the MRI was clear. After 2 years I've sought the help of a neuro physio who was excellent. She is helping me with eye exercises to desensitized the CNS as everything we look at is heightened. I try cranial sacral therapy and some people have said that has helped.

I would definitely recommend mindfulness meditation for health and the breathworks site. You can either complete the course online or read the book. Mindfulness meditation really helps when suffering from chronic longterm health issues. It can help you to pace yourself, find acceptance in the things you can do and help let go of thoughts about things you used to do. Adapting to a change in health which is ongoing really does take a role on mental health. Healing in some way like mindfulness may help you journey be a little smoother.

Wishing you pain free, calm and happy moments each day. You have come this far, you are still here; celebrate your strength of recovery each day.

How did you manage to get a full body mri? I think that's what I need, but struggling to get head done never mind body!! Which area of uk do you live? I've had bm x5! Last year was my 5th completely struggling with my recovery ...

Landlord
Landlord in reply to Scouse2020

Hiya,

By October last year I was almost bed bound with very few good days, it had taken so long for neurologist to sign me off I was becoming I'll again and guess that's why, my body was in so much pain they decided to try and find out why.

My whole medical treatment took place at The Queen Elizabeth Hospital Birmingham.

I have to say they were very good

Chris

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