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Meningitis Now
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Getting down after my checkup but im not gonna let this defeat me & im gonna pick myself up! πŸ˜¬πŸ€—

So weeks out of hospital and a week since having my first check up;

Last week i was like Ive come away from my check up and i still have a load of questions/comments and feeling "will i ever know or have all the answers i want or need?!"...

Im still always feeling sickly but thinking as I've said its my IBS/intolerances and they've got worse :/

and I'm moaning usually always to myself under my breath haha my scalp/head/skin is very over sensitive, my skin seems very itchy and sore and i need to wash my hair like every two days max as it seems to feel really sore etc

My kidneys (mostly my right) are sore

I had issues with my kidneys before this and was under investigation with constant water/kidney infections and as soon as they tried to ween me off strong drugs in hospital and tried ibrufopen my right kidney started to hurt... I mentioned this and they said they'd check my last blood results and said no everything's fine, said some medical stuff as i assume meant my kidney function showed up fine!

Frustrating ay; so as usual or even more now i constantly have kidney pains and still constantly getting told there fine! (I wish they were!)

So I'm still really boney to (always been slim but never been skin and bones) after my body fort off this horrible disease and used all my fat/muscle I'm finding it really hard to put anything on

Especially as i cant move/walk properly and an attitude of everything's getting to me lately and i feel like people don't know what I've been through and going through so everyday is frustrating and I'm like whats normal; well as normal for us recovering.

One day my spirits are great then the next I'm so

low :/

I still have this thing thats at the back of my head/neck/spine...

This pain/uncomfortable/pressure feelings

That stops me being able to lean back on things or slouch on the sofa etc :/

When i get cold the bottom of my back is agonisingly painful and also my spine;mainly at the top and i really shake which makes it worse...

If i didn't like the cold before my body hates it even more now

When i was in hospital After two weeks of been in & out of consciousness etc having my cafater out ... I had pysios and was helped up and on my feet... (Sort of) I was literally like an old woman.. I scuttled my feet, and had help to go in the bathroom

Every part of me hurt and i couldn't believe how much my body looks like its wasted away

I didn't eat for a week and half but pumped with so many fluids my body swelled up,

Once i came home noticing every day how boney i am is so surreal and hurts everywhere :/

Anyway.. So I've noticed today (I'm right handed) theres a tiny bit of muscle in the top of my right arm πŸ˜‚πŸ™ˆπŸ‘ŒπŸΌ seems a funny thing to be happy about

Oh i don't sleep or rather its really hard to sleep

No matter what time i get up or what i do in the day i still cant sleep properly at night until the early hours of the next day ☹

... So today I've woke up early and decided im gonna try my damnedest to keep moving, keep motivating myself and stop being negative no matter what!

I wanna be more determined, positive and stronger than i even was before!!!

So I'm gonna eat right, drink mountains of water, move as much as i can, stop waiting around for people and reach out/go to them and chase all them docs appointments!

(And definitely get out of this moaning state) πŸ™„πŸ˜‚πŸ˜

Have a great christmas everyone! πŸ’‹πŸŽπŸŽ€βœ¨πŸŽ„πŸ™πŸΌπŸ™ŒπŸΌ

9 Replies
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I have been hesitant to tell you of my experience because I don't want you to be concerned that it might be that way for you. It has been 8 years and im still plagued with agonizing headaches, dizziness, poor balance, I fall often, I can't concentrate or focus, I feel as though I'm in a constant dream,everything feels surreal, I have extreme muscle weakness, and I've stopped living my life. Example... I live to take my grandkids to the park. It's very beautiful and we love hunting for fossils. After meningitis I would take them And truly wanted to

participate but I would find myself

just sitting and staring, as if I was

catatonic. So many things like that I can't even begin to tell you. I didn't have any moral support, my family simply doesn't get it. I appear completely OK but No one knows what's going on inside. You sound like whatever is going on you have a healthy attitude. Hopefully you have a good support system. Keep up the good work and never stop reaching out.

Its good that you found this website. I don't know why but I've been trying to reach out to others for a long time. Lord only knows what was so difficult about that but happy to have you guys for input now. It's absolutely essential to contact others that have been through it. Their the only ones that can truly relate. I've found that even health care personell are not very helpful. You have to stay on it with them and it you find your not getting the care you need keep trying. I cant tell you how many doctors I've seen. I'm certainly not the same person and never will be. My husband says he took one wife tocthe hospital and brought s new one home.


Hi veezee

Sorry you are so plagued with problems still, i hate whats happened to me and part of me knows no matter what doctors say they never really truly understand or know how each patient is feeling or going to recover so i take what some of they say with a pinch of salt.

But aswell as that im so fedup of doing nothing and as much as i know what my body and mind has gone through i am sick of moaning and im sick of people acting like i look fine and forgetting im ill or thinking im fine

Im not but im gonna try to be.

Ive given myself 8wks at home recovering doing nothing bar stuff in the house when i can and if i carry on im going to go in a deep depression feeling worse for myself so i mynswell go and try and stop myself doing that and go right im gonna try, im gonna try workout, im gonna try move more, im gonna try work more and see what happens, see how my body copes etc if its just a bit of problems because of it ill slow down slightly if it really causes problems ill slow down more but im just afraid of it staying n if it stays ill try push myself to see how i can cope etc

Although the infectious diseases doctor thought that a lot of my walking problems and unbalancedness etc was due to me having it firstly start in my inner ear/mastoiditis and my ear drum bursting etc n once i see them maybe theyll say its a waiting game which would be rubbish or maybe theyll say i need an op on my ear but i dontknow and im thinking its gonna be rubbish no matter what so i mynswell try my best and go for it; i woke up this morning feeling good bar the obvious and a few diff things but like i said i wanna try and i want people to know yes ive been through an absoloutely hellish traumatic experience/the worst thing ever but im obviously a fighter and got through it by the skin of my teeth as they say some how wether it was the machines at the hospital or the fighter within me/my mind, wether it was a god or wether it was the healing crystals i got bought for me i dontknow but im here and i think its gonna be easy to let myself dwell in four walls that are already stressing and depressing me so i mynswell try to kick my ass back into shape...

No literally i dont have one it dissapeared haha πŸ˜‚πŸ™ˆ

So thats it ive gone on enough haha

Thanks for chatting

Talk any time and i hope your doing well!***

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Thank you so much. I love your strength of character. It's been a lonely fight and I'm getting very tired.I was so confused after what happened I couldn't do business or anything of that nature. My husband was disabled and applying for social security when this happened. And afterwards I couldn't hold the family up anymore. I lost my house my car and had to put my daughter out of the house because my husband didn't know what to do and my strength of mind was nonexistent. Before it we were in his moms home. I don't know what it was but I slept 18 to 20 hrs a day. I also became extremley heat intolerant. I could hardly stand up long enough to cook a meal. Forget cleaning up afterwards. But everyone was unhappy with me. Most folks put it up to laziness on my part. Well I end up staying in a room 12 by 12 for 6 years. Because her home was about a million degrees. I would get deathly ill when I was to hot. My husband became mildly abusive, my mother in law lost respect for me. And nothing changed until my grand kids came to spend the night they made a mess I'm her home and we were displaced again. Well I have truly babbled long enough. I'm not looking for sympathy I just wanted to make sure that it doesn't happen to you. You have a healthy attitude and I'm praying for moral support in your life. I'm truly grateful to have found this avenue of support. I hope you continue to improve and life gives you a break. Take care and know I will be communicating with you more in the future. Looking forward to your next posts and following your recovery.


Just rereading some posts. Came across yours. Just checking how things are going for you. Me. I'm still trying g to figure things out. Feels like a permanent sentence. But I've adapted and just keep going. Somehow. Many blessings.


My daughter had bacterial meningitis when she was 5. She's now 41. Over the years she had violent outbursts, constant migraines, would be very vague. We just thought it was all to do with the guy she was with, who dished out constant emotional abuse. She's been away from him for years now, but her daughter took over the yelling, abuse, etc from her father. It all came to a head this year when her brother paid for her to go on a cruise. She totally lost it onboard, telling my son, partner & friends off. I had days on the phone trying to calm her down. She was saying suicidal things. I always knew her personality changed after her bout of meningitis, but while she was away I did a lot of research & felt sick reading all the after effects & it all fell into place. She has lost all her friends over the years because of her behaviour, she's so afraid of the future about being alone, anxious, headaches, terrible mood swings & temper outbursts. Took her to a Dr when she got back & is now on medication. Just a waiting game to see if she improves. People just don't realise how this can totally change someone's personality. I know I didn't realise how bad it was. Back then you couldn't research like you can now & Drs didn't give you any information about possible after effects, etc. I'm praying she will improve now.

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Hey just read the post about your daughter and I have to thank you for sharing. It is so

Comforting to know this isn't all in my mind. That what I am experiencing is real and not something manufactured in my head. Because that's truly how it feels at times. I am praying that things will go well for you and your daughter. Many blessings.


Hi Veezee15' glad it helped you in someway. How old were you when you got meningitis & how long ago. What side effects are you experiencing. This site is so good, because reading through the after effects others are having makes me realise what she's been going through all these years. I'm going to show her so she can read them for herself. She's only been on medication for a couple of weeks & I can see an improvement already. She's actually talking about things now where before you had to force conversation from her. She's sleeping good & the constant anxiety has settled. She's so much better just knowing that her meningitis is behind her behaviour. Others who don't know much about meningitis don't understand how it can change a person to this extend & just put it down to them having a bad temper & everything being a drama. Hope things improves for you soon.

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Hello Stace, first I don't remember why but the dr when I was in the hospital for viral meningitis told me "no more ibuprophen" " just acetaminophen" and the recovery take time, don't rush, you are going to recover, just need time, you have and need to control the quantity of your food, if you eat more head ache, if you eat less head ache, you will learn what you body needs, you body is going to tell you what to do. Just have patience, drink water, eat salmon, vegetables, fruit, and if your stomach is strong enough to digest chicken, eat chicken, don't meat, no yet, to strong for the digestion. I remember when I started drinking smoothie I got constipated right away, so now I use more water in my smoothie. You will learn what to eat. I was 2 weeks in coma, 3 years ago for viral meningitis and encephalitis. I recover a lot no 100% but enough to have a normal life. I hope you get better soon. Be patience.


Remember to be kind to yourself - you have been through a lot. Eating right, drinking lots of water and keeping gently moving around are all good. Treat yourself, whether it is a favourite film, a chat with your friends, a special treat for lunch now and then, allow yourself to be creative - those adult colouring books are great, go for a short walk, paint, knit sew, bake, do things you can manage and enjoy even if only for half an hour. And rest up. Have a good calm xmas and hope good things start for you in the new year.


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