Meningitis/encephalitis/brain illness

[Hexy]

To all you wonderful people who have suffered with all types of this debilitating illness, did you know that you come under The Mental Health umbrella????? Mainly because your brain doesn't function properly? Poor memories ,mixed ones, lost ones, you need to ask the people close to you to be honest and let you know when you are, repeating yourself, mixing memories etc. This is very important for all of you, if at some time in the future, people drift away because your not the person you once were. Don't be afraid, it's our new normal.😘 We have a changed personality because You're brain is damaged, it can't repair damaged brain cells. The intention is to get family friends to be honest with you,as they will feel uncomfortable saying you have changed, we feel the same,but we aren't. It's a coping mechanism the brain tries to make sense of its missing memories and to us it does make sense, to other's,well, it's like reading 2/3/4books, your brain makes them into one book. Does anyone understand where I'm going with this? Please contact me if you want to. I hope I've given you a bit of help. Into why this is an invisible illness with so many side effects. 💜

[kalirachi]

It's an interesting thought but I am wondering exactly how that 'coming under the mental health umbrella' is actually going to offer any benefits. When doctors and neurologists are in denial and generally dismissive that a problem exists which is more often sadly the case, it would be enormously difficult to convince anyone else that this has become a long term disability and even if one could what would the likely benefits be? People with mental disabilities in this country are right at the bottom of the list for any additional financial benefits even when their situation has been properly diagnosed. All doctors do at present is prescribe pain killers and anti depressants which we all know are never the solution. Many people have investigated alternative therapies and tried them with extremely limited success. Doctors will always repeat the same old mantra that healing takes time and must be patient and try to live a healthy lifestyle etc, etc simply because they simply don't have any answers.

[Hexy in reply to kalirachi]

It means of you can't cope with working, you will get benefits and under the mental health issues, even if they put you in the work group, you do not have to go for job interviews or work. Hope this was helpful.💜

[Hexy in reply to Hexy]

Ask your doctor to send you for therapy through the LEGS TALK PROGRAMME, it's a helpful tool in retraining your brain and memories.💜 it helped me to talk to a professional who deals with the mind and how we process information and store it (or remember it,whether correct or not)

[Hexy in reply to kalirachi]

I forgot to add, you need to see a Neurologist who is specialists in this area, as many are like general practitioners. So you might get a general Neurologist. Ok? Which isn't helpful at all. Wishing you well💜

[Bellesmom12]

I, seriously, don't need to be reminded that my brain has sustained a serious injury and that I am not the same. Why would I want or need my family members and friends to tell me that? I am fully aware. If they start correcting me or drawing my attention to it, it will only make me worse.

[Hexy in reply to Bellesmom12]

Actually it's very helpful in your recovery! As told to me by my consultant ! I was trying to be helpful, it's helped me a lot by learning to laugh, rather than cry. You don't have to be so mean about it!

[Hexy in reply to Hexy]

You sound like a very angry person. Guess what that's part of the symtoms! I was angry for year's because I thought people were lying to me about thing's we did together, I couldn't remember doing . I had a brilliant consultant team and GP who had also had menoencephalitis so he understood what I was going through, he used to come to my home every day to make me laugh at myself and my mistaken memories and believe me it was hard. I'm so grateful to Barry Michael,(my then GP) my hero. HE TAUGHT ME FLASH CARDS WRITING A DIARY, PLUS SO MUCH MORE, YOU NEED TO TRUST THE HELP GIVEN.Kindest regards💜

[Bellesmom12 in reply to Hexy]

I wasn't trying to be mean. I have a full time, very stressful job, elderly parent, a family of my own and I am 1 1/2 years out of my diagnosis. Still struggle. I have tremors, my memory is not what it was and I have constant numbness along with the fear of it returning. Am I angry? You betcha. I have always been outgoing, very daring, love sports, everyone looks to to be the doer. All of a sudden I am totally different. Getting my contacts in is a chore.

I am just saying I cope by continuing on in spite of these changes to my life. I find humor in my illness where I can. Like I always say I guess I will never be able to play Operation again. But, I am glad you have found a way to cope. I am sorry if you took my post the wrong way. I am just different from you in that I don't like to have anyone draw attention to my symptoms because SOME of them I can ignore. When people hug me they will sometimes say, "Oh, I can feel you shaking". Then it makes me worse until I can ignore it again.

Once again, sorry. Glad you have some kind of support team. Whatever works for all of us. Am I angry? Yep. But I am also very happy in spite of it all.

God bless us all. This illness is evil.

I

[Hexy in reply to Bellesmom12]

Sorry I didn't mean to upset you. Yes this really is an invisible evil illness,as I said it's over 25years since I had menoencephalitis, I'm still struggling. I wish everyone who has had this illness was getting the best care needed, I read more and more that nobody's doctors seem to care, they need pulling up on it. Get them to start off by contacting the Meningitis Society, they are so helpful. I wish you all the love and support you deserve. After all it's not cured just because you look ok. Aggravatinly maddening. Wish you well.💜💜

[Bellesmom12 in reply to Hexy]

You did NOT upset me. I was meaning I am mad because of the fact that I can't do all the things I used to do. I miss my old life. Yes, I am very lucky, but totally different. I do NOT like it. God speed. Glad you are doing so well. I am fine too.