5months after first contracting bacterial m... - Meningitis Now

Meningitis Now

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5months after first contracting bacterial meningitis; checkups, side effects, friends, life and managing


Hi guys

So i haven't wrote for a while

My emotions are like most; some days i'm good and other days I'm low and let things effect me

I am so grateful for the people around me who truly have shown that they are there for me and although ive still struggled in all ways they helped and i wouldnt be here without them; especially as you clearly see whos there and whos not and that some people just dont understand what you've been through or how to deal with it or how to react or show that they are there. To anyone going through it i'd say think of it being the other way round and take everything with a pinch of salt. Sometimes being stuck in four walls you really overthink things and worry about stuff but just don't. Think about yourself and focus on something and allow yourself to heal/recover and time to do this. Especially as stress isn't a great thing and also after the stress I've been through and my body my hair's falling out and so i can't overthink, worry or allow myself to stress at all over anything; keep calm and think positive, its hard but force it you can do it! Be brave! :) haha. Sometimes its also the people that make a difference thay you prejudged/expected not to care that were there or that said the right things that just clicked!

I hope to show once im out and about more and if i ever get any wages/decent money haha to show all the people that have held me up how special they really are!

Anyway (i do go on 😂🙈) ... My headaches are quite the same; sometimes quite bad other times I'm sure i think i forget about them or at least now I'm getting better im distracted from them. So they're continous aswell as ear pains. I/my family asked the GP to refer me for pyhsio; ive just started this but its started to improve my back and neck which the girl said is very stiff; the bones and muscles and there's still a lot of pain/soreness and clicking there, so thats ongoing. My ibs is still bad im hoping on my next GP appointment they can refer me to sort this. My eyes are quite bad which i didn't notice loads until i started to do more and be more active so I'm getting referred to an ontologist for that. The circulation in my hands, arms and legs i feel isn't great and is like pins and needles but i imagine the more i move/become active that'll stop in time/get better.

My memories definately been effected and what i think doesn't always come out of my mouth right as though i stumble my words but wishfully thinking that will get better the more i interact/be out and about and get back to work.

Im still deaf in my right ear but not as bad and the ent specialist said that your body just adjusts to this; so hopefully as i get on to doing more I wont notice it as much and he also said sometimes with this much damage and nerve damage/pressure your nerves/brain still sends pain/signals that can be helped with medication and theres exercises that help with balance if i need it but times a great healer so ill see how it goes. He said my ear drum has mended itself and there's scar tissue so as thats healed that's obviously whats improved my balance/dizziness etc

I still have off & on pains, pressure pains, throbbing and weird sensations especially the one from my head to top of my back that stop me leaning back but i feel loads better than obviously i once was and after feeling so low at times in and out of hospital i now feel like i should be positive and i'm trying to think about being/getting really fit and mobile completely and all the things i can eventually get up to, things to look forward to etc.

But also i still am bearing in mind ive still got issues but little by little i never thought i'd be like i am now :) When i first came out of hospital i was skin and bones and could barely walk or sit and never thought that would ever happen or that id get better.

Im not a victim but a survivor, accept what you've been through, allow yourself time, accept the normal what once was is never going to be the same and be positive, get strong and help others, that's just what i think.

Anyway ill let you know how starting work for a couple of hours goes and how i am after moving more etc.

Thanks for reading; take care guys!🤗💋💛

9 Replies

I'm very happy to hear that your improving. It seems as though you have a very healthy attitude. Which is paramount to recovery. I have found my self with deep depression and anxiety. It's been eight years and I haven't found moral support or even a doctor who had a clue. I my self tend to go on and on about things. Speaking or holding a conversation is frustrating because my brain knows what I want to say but the words just won't come out right. I was locked in a room 12 by 12 for six years because my mind could not process the actual business of life. Paperwork and record keeping has become a nightmare for me. I wasctjeconly provider for six people before this happened. Now I can't seem to even get my bills paid I'm always getting reconnection fees imposed because of nonpayment. I have no provider or any kind of help emotionally or physically. So your posts and all the others have been a saving grace for me. I have at least been able to see that the myriad of issues I still continue with are not all in my mind. And that is very comforting. Please don't stop posting. I'm following g you and your recovery. Your an inspiration. Good luck.

Stace30 in reply to Veezee15

Hi veezee

Im sorry you feel this way

I suppose i can only say sometimes i have a bad day or an off day but at the moment and on a whole as life itself knowone will hand us anything a freepass or pick us up but ourselves

Im fedup of people thinking im still ill, im fedup of people thinking im fine, im fedup of feeling like i have to argue to get any support belief or help from the nhs so i suppose im like ok sometimes i even doubt myself and wether ill fully be me but plenty of people like to see failures amd skimp out of actually helping people so my heads held high i am going to manage my after/side effects and what will allowing myself to keep being in a deep depression do from being in the same house 24/7 because im not well enough or able or to anxious... Nothing

Ill get worse, i wont be here, any friends, family, acquanticies will be ill, upset etc and there'll be a vicious circle and so im not gonna let it happen! Another reason as yourself and others on here who have had men, sepsis, pneumonia etc i presume have the same unpathetic attitude towards them and at the worst times when your confused, upset, feeling like knowones helping and nothings going to get better so instead of others still feeling like that hopefully theyll read a few words from one of us and realise like we say you may not be normal again but i am going to be ...

"my new normal" ...

Im pushing myself to do good and not hate/bad... We still have a purpose and i want that to be put into doing good makes you feel good; ive wrote cards/letters to every doctor/nurse/cook i came across that went above and beyond, when im up to it ill be out buying a token of thanks just a little something, i will maybe buy the numerous wards i was biscuits/sweets, i will name every amazing nurse etc for pals to pass onto to the hospital director, i will buy flowers for my manager whos words have been a comfort and a push! And if im not distracted enough by that ill just have to be a bit nicer to the people closest to me or find daily good deeds or try to do some sort of charity involvement no matter how small, laughter, distraction and a warm heart is pushing me forward aswell as telling myself nothing is worth stressing over, i dont care what he or she said, and i wont get dragged into drama, helping isnt sacrificing yourself, and also as much as knowone cares to help with my after/side effects i just thought no i will tell the doctor this, i will tell my gp that, i will say how much i need to be referred thats hindering myself!

Sorry going on again 😂🙈

You take care and keep going!🤗

Veezee15 in reply to Stace30

I will and thanks. Same to you. I find my self writing these huge narratives at times. I get on a roll and can't seem to stop. In my last post I wasn't meaning to moan and groan. I'm not having a pity party, it's like you said...if someone can hear our stories at least they can find solace in the fact their not alone. And hearing the hope and determination of those of you who have recently been through this is inspiring to me. Blessings to you and all others on the road to recovery.

Stace30 in reply to Veezee15

Also ... Focus on what you can do not what you cant! :)

one day at the time... all the best for you.

Dear Stac30,

You and I seem to be running parallel in our meningitis recovery.  I am so glad to hear you are on the mends.  I contracted bacterial meningitis after sinus surgery in October  2015.  I am so grateful to have an amazing group of family, friends, co-workers, and doctors, except the surgeon. I have total hearing loss in my right ear and partial loss in my left. This imbalance in hearing has created a vestibular disorder .... An imbalance in my walking.  Months of physical therapy has really helped.  The hearing aids are helping but I can't stand being in a parking lot.  I can't tell which direction the noise is coming from and cars running freaks me out.  Not knowing where it is coming from and I don't move quickly .... What a bad combination! My mind also knows what it wants to say but the wrong thing comes out of my mouth.  I was experiencing two different types of headaches, meningitis and another that turned out to be a pitched nerve.  I went to a pain management doctor and had shots for the nerve headache.  He said the nerve was being pitched because I was laying down so much.  The shots were painful but after 6 weeks of them the headaches are gone. Knock on wood!  I get frustrated when I fall and when I can't do things I used to be able to do.  I am so looking forward to going back to work in May.  My doctor told me recovery is a journey  not a sprint.  I am on the road to my new normal, whatever that may be.  I pray your journey continues to be a positive one.  


Stace30 in reply to pachecollama

Hi laura

Yea that sounds so similar to me 

Im still having days where i cant cope and get frustrated and then sometimes i find some happiness its so day by day people think you just keep getting fitter and better but its not its one day at a time

Its nice to be able to talk to people who  know; im so sick of people acting like im normal they dont understand at all and if you tell them things they look at you like youre just trying to be a victim  when im far from that and never want or will be a victim. 🤗

I feel your pain.  When I get upset my husband reminds me I am alive.  I just get upset for the loss of my old self.  I am adjusting to my new normal but get so frustrated when things don't go as easy as they used to.  Like you said day by day.  I just started driving 3 weeks ago and am looking forward to going back to work next month.  I am a teacher and will be back to work for 3 weeks before summer break.  This allows me to keep both my job and most importantly my health insurance. Keep up the good work.  Please keep me informed on your progress.  I live in Southern California, are you in the USA? 

Stace30 in reply to pachecollama

Hi lovely 

I know, i suppose partners don't totally understand either to some degree as you have to grieve for your old self and as much as we didnt have to have anything amputated or die we have still been left feeling like we are in a body that isnt ours. So we are allowed to be upset that we cant do stuff and to get frustrated the same as someone would if they broke their leg or arm etc and couldnt use that for a while then struggled to get better, physio etc. 

Every day i daydream/imagine myself just running to push, move and feel the strength of every part of my body; to just be able to move without thinking first and being pain free.  Maybe one day. 

Oh that sounds good if you,ve started driving, hows that going? 

I felt really stupid today i completely forgot how to use the microwave at work and thought it was broke and i just couldnt comprehend it, and then carried on doing daft stuff; i think sometimes my brains like hello its stupid day meningitisbrain! 

Oh and make sure (if like me) you need  to start on a few hours because as goid as you feel you honestly dont realise how much you do at work and what you cant do; especially if you lost all your fat and muscle like me?

It does help a bit going to work; forces you to start normalising things again.

What a shame im in the UK ***

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