Meningitis Now

Hiding, guilt, frustration! ☹️

How’s everyone doing?

So i haven't spoken for a while but its coming up 18 months/2yrs and I'm struggling.

I get depressed a lot, i get anxious and ill a lot and i struggle to work/socialise daily. I struggle to get up, i struggle to be at work, i struggle to work, i struggle to have the brain power to socialise/the dyspraxia, a body and mind that constantly drags my soul! The forgetfulness/the lack of automatic responses/1st responses that just don't bloody work! The issues know one sees but they choose to judge you anyway, the worry, the second guessing, the feeling of fighting alone for yourself!

I suppose I’ve tried to ignore and hide my problems and kept expecting get back to normal; once i’d got better, once i’d got over the initial major things... that it would just take time, but it’s not; and i don't like the person I've become. I dont know who i am anymore or who i am supposed to be, or what i did and didn’t have before the illness! Im one of those people that just love to work hard (or i was) ... one of those people that loved to get stuck in, a hard worker! I loved nothing more than physically working hard! NOW... i pretend, i try, i fail, or i need a million breaks or one every second just to do one task. I've never known FRUSTRATION like this ever! I get low, my body gets low and I'm constantly in a vicious circle!

I put off talking to anyone; maybe i think that’s excepting it if i do💭 🤔... maybe i think that makes me weak, makes me look weak or makes people judge and not except me more, maybe its because I've not lost a limb and feel like I'm FORCED to FEEL LUCKY, yet my limbs don’t work properly, my mind doesn’t work properly, my voice doesn't come out, my eyes stream, my anger lashes out, my patience is lost, my soul trapped, my thoughts mixed up, my body at loggerheads, food feeding my emotions but killing my insides like poison and my insides unable to look after me... medicine taking me out yet my organs needing more... what do i do... a Chinese medical doctor... a herbal doctor... force myself to talk to someone... I’m at a stand still, in a rut, trying to exist!

I wanna become a different person, a better person, changed in a good way.

Yet this constant battle with my head and my body and the outside world is torture...

What do you do when your iron and vitamins are low, you have a kidney infection and you could just cry having to get up in the morning never mind going work and trying to do a days work!

I worry a lot; i can barely do anything yet i have to pay my bills :/

Love You All! 💖

#Iron #frustration #ill #bacterialmeningitis #septecimea #pneumonia #pain #headaches #anxiety #judgement #work

27 Replies
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You said a lot here and I can relate. I had viral meningitis 10 years ago and now I still don't work,grind my teeth constantly over worry but yet I don't do anything at all. I mean I do write a blog but like you I used to love physical work. I was a US Marine and then an electrician. Now I don't feel like doing anything at all. I collect a disability check and kind of hang out my life away. I can't say it get better with time but I know one thing that has helped me and that is meditation and talking myself through feelings of anxiety and depression. Maybe the thing is that you should remember is that you need to take care of yourself, be patient with yourself and no learn to relax. Don't try and take on the world like you used to. Let the world be and take time to get to know the real you. The emotions that come with manyn illnesses can be draining I know that. But I also know that if I can stop and remind myself that I have lots to be grateful for I can see some positivity. I am sorry youre struggling. I am too but I keep trying to at least hope for a brighter future. I also go to spiritual groups sometimes which help to know I am not alone in my struggle. I wish you the best Stace

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Hi dobguy 1

Hows you?

Thanks for the reply!

I’m glad you write a blog; whats that on? Ive found writing things down and drawing is like therapy or at least makes me feel better/zone out.

I’m sad to see you can’t/don’t do anything at the minute!

I still go to work but its frustrating and uncomfortable and a lot of times I’m in pain or uncomfortable and just carry on and like you say i feel like i hang out my days most of the time because I’m never well enough to do anything as i scrape by a days work and then I’m to exhausted/ill to do anything else/see anyone.

Thankyou for your words about patience and allowing yourself things/time etc sometimes I don’tknow what to do for the best and try to push mtself because I don’tknow how to be or get any better.

The groups you go to sound good i bet they help, i think things could probably help but again i’m stubborn or proud or feel like i should fit into this mould that there should be something obvious wrong with me to justify me being allowed this go :/ i dontknow.

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Hi Stace. My blog is at www.blogging tips for newbies.com. It makes me some money because I can't work the way I used to. Plus it helps me to just chill out because my brain goes off on its own all the time. I also built a meditation site. Where are you in the world? I am in North Carolina is the US. Like I said I have.good days and bad days like everyone and Itry and find things to just grateful for. Like having a place to live, or having food or even having a TV to watch. I have had a lot of stuff and that does t really make me happy so I try and look within. Do they have support groups where you are? They are pretty helpful and if you could find one you should. It makes you feel better to talk things out. It helps me anyway. I hope things are going g OK for you. I can feel your pain and wish I could help.

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Hi

Sounds interesting!

Yea thats the thing ay, i got up to full time but i can’t cope with it i feel like i need a little stress free job or working from home; I don’t know where to start🙈

If there are I don’t seem to be finding them; i’m here in the UK 🇬🇧

I’m only just starting to except i need to talk/have support but i feel like every time i reach out know one gets back intouch and as you can imagine it doesn’t give me the courage to chase up or try again🤗 i’m enjoying a day of rest with loved ones today so it’s a good day :) i hope ur well!

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Well, if you need talk just let me know. The blog oz pretty cool. I learned how to do of on this learning course that teaches you how tomearn with a blog. But I have to write out and maintain it. Its good for people who have extra time

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I think you summed it up perfectly! I told my neurologist that was tired of being lucky that I wanted to be myself again. Well in December, I parted with my job and started looking for a new one in Florida. Since being unemployed I have been able to relax & think about my situation. I have reached out to God for help and he has answered. This morning a have an interview with a hospital. I drove by myself over 7 hrs yesterday to get here. I am confident & realize that I do have limits. I feel that I am being led around the corner to a new and better life. Be as patient as you can. I know how difficult that can be but hang in there & find some one to share your feelings with.

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Hi runnerma

Exactly tell me about it!... why should we feel lucky and why can’t we be bothered about being left with so much! Its this thing ... of people not seeing the issues so your treated with so much judgement!

I find it really hard to be patient i dont think i have an ounce of it lately and i suppose i go in knowing what i am going get so i have my guard up straight!!

Thanks for the reply!... and well done for that drive!!!... I don’t drive at all because of my head/eyes. What job are you doing now if you don’t mind me asking? 🤗

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I am unemployed at this time but looking for an occupational health nurse position. There is no way that I could work in the hospital setting & working 12+ hours a day! I am finding out that my age (61) decreases my chances of getting another job. I have good days & bad days but it is getting better. Just need to find a job with no stress 😬 I am much happier since not working but getting worried about getting a job which I need to do soon.

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Hey

Oh ano, i feel like there should be more support to help us with things like this, i feel the same, at the minute i am down for 7hr days and I can’t even do that at the minute and yes exactly stress.. is a no go it sends me haywire haha But how do you say and do that to employers who look at you like your ok.

I’m sure theres stuff out there, some nice little jobs i’m sure! I’ll be needing find one soon. I hope you get fixed up with one!

Take care!

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I am really sorry to hear about how you feel but I do understand I had menicoccal Septicaemia 3 years 6month ago and I have suffered terribly as you say .i was always working as I enjoyed having a full life .I can’t even have friends round as I have daily headaches and the pain has been unbearable some times.The o ly reason I have have survived up to now is that my husband has never left my side I pray every day that I can get myself back The Doctors don’t seem to know what to do sometimes I think your putting it on I wish they could feel what we feel even for a day that would change matters.There is no shame in getting the help you need even if you go and talk to someone try and keep calm and not get angry and all these other negative feelings as that only makes you feel worse.I hope you have someone there that understands how you feel as is does help if not try and find some support system there are out there .just watch the medication your on as that can have bad side affects if you have the right medication and support your half way there keep in touch and let me know how you are getting on .If I can help in any way I’m here .i send my blessings to you take care. 1251

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Hi 1251

Hope your day is good today!

Thanks for your reply every reply means a lot as i am sure you know! Like you say i struggle with frustration because of gp attitudes and specialists because their “generic” tests come out normal we just must be depressed or exegarating for some reason, i am sick of having to argue and note stuff down.

This week i got told my ironand b12 was fine after getting told it was fine then borderline and then i got told my Iron wasn’t tested; its like knowone has a clue about meningitis and the effects, because there normal tests aren’t the same! A borderline test or a cold effects the generic average hardly a touch yet i end up at my wits end with issues.

I have decided to try to lose a couple of days each month to see if it helps any, today was one of them and as ling as i am not doing much i’m not to bad, its a goodish day. 🤗

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Hello stace30 you must try and rest as much as you can .After I was sent home from the hospital I thought I could do the same as before and I did myself more harm than good .try and go with what your body is telling you it’s very hard as you just want to do things all the time but you can’t and if you do you suffer terribly for it .This is a long process but as long as you have the support you need there will be a light at the end of the tunnel. I hope it all goes well for you this is when you need lots of patience. Big hug to you getwell .

1251

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Thank you very much 1251

I feel like I’m only just starting to admit i am not gonna get better/change now and I’m a different person but still find myself trying not to except it now and again. Its just like the more you realise and try to stop yourself from doing what you did or what you need to the more people judge and question you like i nearly died, luckily i didnt and i know its one got nothing to do with you and two you cant see anything wrong but i struggle in so mamy ways all the time!!! Why should i keep answering myself, some people are just shallow and selfish🤗🤗

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Your right people don’t care so don, t you care what they think. You know how you feel and you just do what’s right for you.i struggle every day I can’t even do 1/4 of the things I used to so we have to work round that .you don’t have to keep questioning yourself you have been really poorly and it will take time.I wish I had more answers for you rest as much as you can and keep stress away if possible which it’s not easy as there is alway something going on in people’s lives. Don,t think you won’t get better you can’t think like that but I do understand it as I have said I’m not going to make it but that’s like giving up and you can’t do that especially if you have a family.just keep messaging me if you want a chat and if I can help in anyway . Big hugs to get better 1251

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I know your right there! Its like if i go work I can’t socialise see peep coz i need rest or get disoriented and to stressed and then days off i need to have a lie in and rest its mad ay! 🤗

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Here is an instance I had my granddaughter down from Edingbrugh she does 12hour shifts as she is a nurse so I told her to bring her washing and ironing Down to help her something I could have done standing on my head and more.when she went back I was really poor I had used up my reserve now I can’t move it’s really upsets me as I was always on the go and run a building business now I could not run a raffle haha .I know it’s very difficult for you as I’m in the same boat I have headaches all the time as well since having the meningitis. You can’t believe what that terrible Ilness leaves you feeling.i keep researching how to get better if I find out anything that will help you I will get intouch.Try and rest plenty your body needs rest to heal.try and not get distressed I’m a right one telling you that as some times I do get very upset but it just makes you worse you have to except things dont fight it it doesn’t work.Are you taking vitamins tonics anything that gives you more strength,just say to yourself your not going to beat me you .swine haha just trying to keep you pecker up .

Bigg hugs to get better 1251

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Thanks a lot for your comforting words! I will try my best and yes hopefully we will have more better outcomes and things to help us soon! :)

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Can you tell me if you had meningitis and what kind 1251😆

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Hey yes its on my page; i had bacterial meningitis i think it was Strep’

I had sepsis and pneumonia too

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I’m not to good at the moment .if I get any information for you I will message you.i hope you find your way as I’m trying to do .Big Huggs to get better 123

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That’s the way to go try and rest a lot and get Vitamins that you need go to Holland and Barnet they will keep you right if you tell them how you feel anything is worth a try .i have been bedridden for 2days now I felt terriblebecause I over did it .if I have any information for you I will message you lots of hugs to get you better take care 1251

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I had meninges/encephalitis in August 2017 and am feeling so down. The headaches I have had just vary in degrees of how bad they are. I have had hot flushes ever since and had been through menopause 15 years ago. I am in a darkened room most of the time and if I have to leave I have to wear sunglasses. It doesn't seem to be getting any better. I am lucky my husband has been beside me ever since but it seems if I get stressed in any way, I become flushed and my memory gets worse. I was always so good with maths but since I got sick I can't even add up.

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Hi Jenny

Hope you are having a “good day” today!

Its still very early stages for you by the dates you have put, i luckily had a few people that helped/provided for me while i was at home recovering so thats a good help for you! I think you should have some reassurance that things will lessen, from my experiences they will never change but certainly will get better, i got told your body needs time to adjust and heal and get back strong and also you usually get told anything you have after 2yrs is what you are usually left with and need to manage, theres a comfort and a frustration in both I guess. I have good and bad days, struggle to work, socialise, mood swings, etc. One definite thing that makes me feel better is talking to the people who truly understand like the peep who go through it on here or if a parent like my mam who knows me well, reads my emotions etc and has been by my side ever since knows and doesn’t get frustrated as they truly understand! I am only just coming to terms or at least trying to; with what seems to be a pattern/reoccurrence etc my new me, like i said, frustration is such a beast that i contend with every day! 🤗

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Oh my gosh, sounds just like me! I hate someone else is experiencing these horrible side effects. I actually thought i was somehow imagining my illnessses. Next month will be 2 years since I got sick. I was trying to remember today the person I was before the illness. I tried telling my primary doctor how I felt but got the usual, " have you had thoughts of hurting yourself", blah,blah,blah! I have zero interest in ANYTHING. Don't know what to do.

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Hey Faking

Thats exactly how i feel!

There should be some sort of practice/people that are there for us after the initial illness as i the same as you feel frustrated because its a constant battle! Not only do we have to fight ourself; our new self, fight to get better, frustrations from not being the person we were or doing the stuff we did but we some how get treated like we just depressed for the sake of it and constantly fighting to get people believe us! “Do you need antidepressants”... “just think about it”.... think about tablets! What i do know is that we aren’t taken seriously! Things dont effect us like your average person and what i need is help and support and tests and prescriptions! Not tablets! Unreal... i honestly dontknow why there isn’t some sort of system like this its pretty obvious from just the few i have talked to that its a constant! 🤗

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Dear Faking,

I think that many people thought I was faking after meningitis including my husband. As he has watched me struggle he realized my issues and often reminds me to slow down. I no longer am ashamed to justify my actions which are often influenced by the effects of meningitis on my brain. I have also been asked the "have you ever thought of harming yourself" question, which at first made me mad. I explained my feelings to my neurologist by asking her to imagine trying to live & work with hearing loss, daily headaches, balance problems & unable to dear with stress. Since then she has been very supportive. I hope you can find the support you need.

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Hey runnerma

I too have had my partner not realise sometimes how i am and just act on autopilot/generic about certain things but now he realises the more time goes by how i am, its hard for everyone and because they haven’t been through it and don’t totally understand it i suppose human nature to not see things at times but yea so many similarities going through this horrible disease ay; its so comforting to know how each other are and get on.

I sadly lose patience and feel like i’m constantly arguing with gps, receptionists and work like how mamy times can you say you have good and bad days, your depressed, sometimes you don’t wanna speak, sometimes you can’t do certain stuff etc

Peep just dont get it! Glad we all have this place to chat! 🤗

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