Newbie introduction: Hi This is the first... - Meningitis Now

Meningitis Now

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Newbie introduction

Richbk profile image
9 Replies

Hi

This is the first time I've blog'd anywhere so bear with me if I'm going on!

I had meningitis as a baby and physically suffered complete deafness in my right ear and partial deafness (retaining about 40% hearing) in my left ear. I have learned to live with this obviously never remembering anything differently, although it has been something that has effected me in social situations. As a child I was quite isolated and so fell back into my academic studies and also into music. I guess I chose the bass guitar and double bass as my instrument die to only having partial hearing. It still effects me today in both business and social situations where there is lots of undirected noise and chatter as I can't really determine the source of the sound as as such tend to just blend into the background in certain circumstances. I am certainly not a wall flower and am outgoing and a senior professional in my "trade" but there is a definite impact on how I've been able to develop friendships etc over the years.

As I was growing up, I thought that this was my only affliction as a result of the meningitis. I was always doing stupid things, my parents putting it down to not understanding logic and how one event leads to a necessary outcome. I have done some pretty silly things that in afterthought and with some prompting as to how silly they are, I have realised just how stupid they were.

Since I married my amazingly supportive wife - I am just SO lucky to have had her support - it has become more and more apparent that there is something not right with my thought processes. I cannot see the consequences of actions I take and she has helped to point them out to me, usually not until the aftermath of an argument where I have sworn blind that she is wrong and that I was right only to look at it and really think about and see time and time again that she is right.

Some would say, given the severity of some of the afflictions that can occur as a consequence of meningitis, that this is just plain stupidity and nothing else. However, is is something so subtle and so accepted by me because I have always lived with it, that I am sure there are many out there who are also going through tough times as a result of seemingly bizarre actions that in afterthought, one would have never have made.

I also suffer terribly with short term memory recall. I always thought I was just forgetful but it really is a problem for me. We have ended up in debt chasing situations where I have thought I have dealt with something but actually haven't, and again, this creates a high level of anxiety with my wife when what she needs to do is to be able to rely on me to do what I say I am going to do rather than fret and feel like she is "nagging" me by constantly checking and asking whether I have dealt with certain situations.

It has taken me quite a long time to acknowledge that I have needed help as I have seen it as my place within my family to be the supporter and the strong person in the household. However, I have almost destroyed my family on several occasions and my wife is pretty much in a nervous state because of having to at times treat me like a child in talking through what I am going to do that day etc. It has come to the point where I have had to accept help and seek out ways to alter my behaviours, or find ways to keep myself in check. I have had a psychological assessment, although the resulting report seems to be taking an age to come through, let alone any recommended treatments that will follow.

I'm sorry if this is a bit disjointed but, apart from with my wife, this is the first time I have tried to express what my situation is and it is kind of pouring out! I want to connect with people who have either been through what I have or are experiencing those nagging doubts about how they seem to see the world slightly differently to other people.

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Richbk profile image
Richbk
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9 Replies
Tiga profile image
Tiga

Have you ever thought of have a life book, which you keep in one room you use a lot (LOL) loo good, and each day you write what you need to do, or what you have done, also your wife can write the things that need doing or what you have done.

when I 1st got out, I could not remember anything, I would talk to people and not have a clue, I believe the mind is like a computer, sometimes you need to reboot(rest) other times you need to build new software. my office (loo) has an excel sheet of each month, I sit in my on my office chair (if you know what I mean LOl) and write what I need to do, and each day I can see what is to be done, and what I have done, notes are a great thing, I am the note queen, and hay if it looks daft when people go by my car and see notes stuck every ware who cares, not me

go threw with you wife (excel great) and each month write in what bills are due, and when who ever pays them cross it off and put who paid etc, when mot are due, this way you can always see a month in advance, ok may sound OCD but it does work, look there is nothing wrong with forgetting things, if you have an open scare on your face people would under stand, but we do not, we look normal, sound normal, just means some of us the brain, just works in a different way.

glad you have come to this site, read about other people, reply to them, only us who are on this site can help overs, no matter how daft the replies, hay you only got to read the one I have just done for you haaaaa

best of luck hon., and remember, you are ok, its just your brain computer a little messed up LOL

Lemie profile image
Lemie

I wish I could express myself you have.

Tiga profile image
Tiga in reply to Lemie

sometimes it is very hard to express yourself, i get that, but Lemie, you do not need words, try colours (black) mood (yellow) happy grey (not sure) not everything has to be writted, colour or draw,. thats a gift in it self :))))) you will get there hon

daffodil profile image
daffodil

Hi ,I also have severe short and long term memory problems and can certainly agree with Tiga advice on keeping notes,memory books etc.I still can get into a muddle ,even with making notes and having a small book I carry everywhere with me as lol I sometimes loose it or forget I have written something down.

One thing that works for me is to write a to do list on my mobile phone and then set alarms for some of them -eg if I have an appointment I set alarm for half hour before.Different tactics work for different people so it may take some experimenting,but if you can find ways of working you can retarin your brain to work in different ways.

There is a great website memory-improvement-tips.com which I have been looking at.It has lots of tips,brain training games and a forum where you can ask questions and have an expert answer.Actaully thgink Ill post this for everyone to see as it is really helping and so many folks seem to have memory problems and difficulties in processing info.

Know that you are not alone and we can all understand what you are going through.

Richbk profile image
Richbk

Hi all who have replied. Thanks so much for your comments. I am trying the small black book trick and just keeping a continuous list of things I need to remember. And Daffodil - yeah, I forget the book, forget I've written things down too and I will definitely have a look at that website.

Just gotta keep going for my family as much as myself which is a great incentive.

Richbk profile image
Richbk

Hi Lemie. It is tough to try to put into words how things are isn't it? I totally clam up and don't know what word to come next when I'm trying to say the things I need to say but I find it loads easier to write things down, then read it and just tweak it until it pretty much says what I need it to say.

Debra profile image
Debra

Wow what support everyone offers, totally bowls me over. Chins up everyone

Tiga profile image
Tiga in reply to Debra

i see this blog as one family, if we where put on one island we would be a race of VM people LOL :)

Jeffery profile image
Jeffery

Thanks everyone for sharing your advice ,successes and struggles. It sure does help to know that we are not alone with our challenges. I certainly have experienced my share of brain farts as my daughter calls them. I too keep a journal in my purse and use one big family calendar that has room for everyones commitments. I found myself struggling with all the Drs appointments so now I try to book just 1 a week. That way it is more manageable. God Bless you all. Jeffery

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