Hi guys, I'm new to this site and I'm seeki... - Meningitis Now

Meningitis Now

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Hi guys, I'm new to this site and I'm seeking help. I had BM 19years ago and very thankfully recovered amazingly well. I now however

monkeybeanie profile image
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suffer from extreme depression, hearing loss and I have zero energy at all. I am in constant pain with my joints and have very frequent headaches and seem to have an extremely low immune system - I'm always ill. Is this normal? Im coming up 40 Tia Xx

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monkeybeanie
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Mypain profile image
Mypain

I'm not really sure there is an answer. Everyone seems to be different. I had VM and encephilitis 6 years ago and suffer as you do, daily! I really wish there was an answer. I too am ill, ALOT. I keep going though, I have complete faith that one day we will have answers and help! At least here you have found people who understand and give great support.

SummerJ profile image
SummerJ

Hi Monkeyheanies,

I'm sorry that you're still not well after all this time. I did not have BM,k but had VM and Encephalitis (like Mypain) 14months ago, so compared to you both it's still early days for me, but I still suffer the symptoms you describe (apart from that I don't suffer from depression like you do, althought it sometimes gets me down). I'm sorry I can't give you an answer, and I pick up all bugs going from my children (i'm 36yrs old) due to my low immunity. Welcome to the site! It has helped me a lot to understand things and not to feel alone in the suffering. x

monkeybeanie profile image
monkeybeanie

Thank you peeps, I can't believe its taken me this long to join the group and get some support. I actually feel disabled, and I really don't want to sound offensive to those whom are disabled. I'm a bit fed up of going to my doctor and being told 'well, you're not a spring chicken anymore' and I don't actually think my issues are age related at all. I've been reading quite a few posts in here and I'm amazed at how similar we all are. I had absolutely no follow up at all after my BM and I think this needs to change. Xx

SummerJ profile image
SummerJ

After care following Meningitis is appalling / non-existant in many cases; unless you get your GP to refer you to the appropriate specialists and even then you need to find an understanding GP (who understands that Meningitis doesn't either kill, causes limb loss or otherwise you're 100% and lucky so shouldn't moan!) and if like me you're then put on the NHS waiting list (only recently I've been seen!). I think your GP is ignorant to say that your symptoms are down to your age (your only 40!!), have you tried another GP, I saw a few in our practice until I saw one who'd actually treated someone else with Meningitis and understood the implications and after effects.

I would strongly advise you to contact the Meningitis Trust they were brilliant with me (I had never asked for help or advice before so was really nervous in ringing them but it was the best thing I did), their Helpline number is 0800 80 10 388, they can offer advice and support and also send someone out to speak to you face to face if you would want that.

Best of luck, and I hope you find some answers soon x

Canada3 profile image
Canada3

Hi there monkey beanie, so sorry you are still suffering the after effects. I too had VM almost 4 years ago... I do feel that I am doing pretty well now, but had to make sure there was nothing else interfering with my wellness. When I had some counselling (thanks greatly to the Meningitis Trust (if you are in the UK please get in touch with them, they are fabulous) the counseller said that post BM or VM children often suffer from behavioural problems and adults from anxiety.. I certainly had the latter for quite some time, but it did pass eventually with lots of perserverence and self help books. One of which I would recommend was The Power of Now, helped me to look at the present and not dwell on the past or worry too much about the future. Also Why Kindness is good for you, its good explanation of the physiological changes occurring with anxiety and depression. I can give you the aurthors if you are interested. I wish you joy in your future, I seem to have found mine again, although I never thought it would return to be honest. You are so right there is no aftercare, frankly I think that the medical profession just doesnt know what to do, we are not acute anymore and apart from throwing anti-depressants at us, there isnt much else. Keep in contact with this group, its good and everyone is very supportive.

Tiga profile image
Tiga

Canada is dot on, Vm etc brings fear and fear itself can not help our body

extreme depression, is normal, you can talk to your doc about this, or go the Vit way, B^ ad B12, you can also (if ok with your DOC) take quite life or calms, which you can get from boots chemist or Holland and Barrett, but check with your doc

hearing loss this can also be from illness, ask your doc to send you for tests

zero energy again very normal the body had so much happen to it, it will mean you will have to go back t basic and eat all your greens (yuk) take a good multi vit, and eat lost of carbs and protein this will help you so much

constant pain with my joints this is sad you have this, tenns machine for llyods chemist can help with some of it also LOL yes Vic is great ok you will stink but this will help with joints, neck and back i put it on b 4 i go to bed.

headaches wear sun glasses while out, use ice sticks on forehead, you can get form boots of the £1 shop

low immune system - diet will help with this, and god vits, you body had such a hard it, i need you to help it get better, eating well, small walks NO coffee etc, oranges etc, you have the power to help your body and once you make decision to do this, you are on the path to take control of your life, honey you will get there, do not give up

tantanmics profile image
tantanmics

I too recovered from bm 5years ago, but much like you I am still suffering the after effects so it is very hard to say, just know you are NOT alone in this. Xxx

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