30+ years of meningococcal meningitis,then Encephalitis....

[Hexy]

People don't think about the after effect of living a normal life. Because there isn't one, memory issues, balance,issues, depression and headaches, sometimes so bad it's just like the day you contracted the illness. This comes under the mental health problems, simply because our brains have scar tissues which have wiped some memories out altogether, and some memories join together with unrelated ones, which make sense to the sufferer, though not to the outside world. This is an invisible illness which has huge ramifications when trying to claim benefits, I did work part time, now signed permanent sick by GP, who is wonderful, though I did see a specialist in my field of illness the first year , who was so helpful, second year got a complete idiot,who put my back to work, though incapable of working also fell twice in his presence he lied on the forms. My GO is outraged and they have acknowledged the fact i come under mental health umbrella, therefore do not have to attend any work related meetings. This still begs the question of why they moved me, I get no satisfaction from incompetence. I feel for anyone else who comes across this problem. Apparently it's quite frequent for them to lie and embellish in their favour. Please be aware you are entitled by law to demand a specialist in your field of illness, I was told i had, when in fact I hadn't. Learn to laugh at our inconsistency in speech and memory, or you would go crazy. Kindest Regards to the masses of us, with little knowledge of the effects of our illnesses. Still so little told of long term effects told to patients. Thanking the Meningitis Society for all their help, and my GP.

[ShannanLouise]

Hello Hexy, You're 30 years post-meningitis. I'm now 5 years post-BM and still in pain. My head often feels as though it's going to implode and explode at the same time. Incredible pressure. But in other ways I'm hugely better than I was. The first 4 years were very very slow with barely perceptible improvements however the last year has been a bit more steady, with less setbacks. I can have a few quite good days, then drop back to awful pain. I'm never free of pain, but I can cope with it and have learned to adjust. I still cannot watch tv or listen to radio, or music or go to films. Anything with multiple stimuli knocks me badly. I can't sit up in a car although I can lie in the back if I absolutely need to get anywhere. The doctors and specialists just give up. They have never been any help and are even less helpful now. There are no medications that touch this pain, so, like all of us post-BM, you just have to learn to suffer gracefully and wait til the next better phase. I wish that it was a more widely recognised condition - too many people simply cannot understand that scar tissue following meningitis can cause such pain and debilitation. I have not been able to work for all these years and cannot, as yet, envisage a time when I'll be consistently well enough to resume my work (Ironically I'm a neuroscientist), but I never lose hope and work hard to do all that I can (diet-wise, exercise-wise and positive-thinking-wise) so that one day I might be 'normal' again and lead a full, active, productive life. Til then, I send my best wishes to all of us suffering through this. Shan x

[ShannanLouise]

PS How and when did you get encephalitis Hexy? Was it following BM or afterwards? With the constant pain I still have, I often wonder if I might have fluid and swelling in there....

[Hexy in reply to ShannanLouise]

Initially diagnosed with viral meningitis, then had rash on left side of neck, after one blundered spinal tap, which left nerve damage! Second one showed encephalitis,. This was diagnosed at the same time, year I had meningitis, it was thought I'd infected myself through constant strep throat infections. Hope this is helpful, on anti-depressants and strong pain relief, though don't always help. There isn't enough trained doctors in the benefit system when you go for check ups! Insist that they have someone who is. I got an idiot who put me back on the work, though except i have mental illness I'm not to go for interviews or forced to wp, my own GO (who is fantastic, said so they have acknowledged you can't work, though changed to work) absolutely stupidity. What can I say. Thanks for reply, Anita

[Peeyushk]

Wow. So many years of suffering can make u God. My dad at 75 ia suffering poat BM. Neuro n balance issue. I read shannans too. U ppl r blessed to hav ur basic senses back. My docs hv also given up but not me.

Its tough...toughest.