Positive Message

[Bellesmom12]

5 1/2 months ago I was diagnosed with viral meningitis. I have told my story before. Hell of a ride. Today I drove 40 miles by myself to my daughter's house and went to the pool on a sunny day, went down the water slide twice, drove home, walked my dog, grilled and still up. Do I feel perfect...no. But no way I could have done this a month ago. The point of this is don't give up. We will get better and I am finding the more positive I stay the better I feel. Will I feel crappy tomorrow? Maybe. But try to do what you can and try to surround yourself with positive people. We can beat this. I still have symptoms that vary day to day. I still get WEIRD! Know when to rest but not too much.

[Tortie360]

Great bit of advice. Positivity really helps. Thank you. x

[Bellesmom12 in reply to Tortie360]

You're very welcome. Thanks everyone on this site for helping me know I was not crazy. I was very "rattled" at first. Now I know I am SLOWLY healing. Crazy illness. I still have symptoms but they come and go (at weird times). A good excitement can trigger a numb foot or hand as quickly as a bad excitement (stress). But, we can do this. I pray every day that I never have this again and that everyone on this site is getting better every day.

[Prudence67]

Well done you, such positivity

[Bellesmom12 in reply to Prudence67]

Thanks so much. I am very lucky in that I was able to walk sorta ok. I have walked the horse trails in our state park for years so I think that helped some. I keep telling myself I am retraining my brain. Still WEIRD. But getting there. Different symptom pops up every day. Walking and just talking help, along with sleeping more at night. Hope you are doing well. Let's kick this thing.

[Cryptococcal_Ninja]

Yeah being optimistic is KEY and yes it seems as if different side effects sorta pop up. When I was first treated and I started recovering I almost expected each day to be a bit better, but that isn't likely. There will be some good days and some rough ones. Biggest thing I noticed is that when I felt better and pushed myself I really felt the backlash for a few days afterward. Meningitis definitely takes a serious toll on endurance and be mindful of it and respect it or things go South quick.

[Bellesmom12 in reply to Cryptococcal_Ninja]

Yes, totally agree. However, my bad days can't be predicted and if I expect to feel bad, I usually do. Like the day I did the water slides I was thinking, "Man, I hope I'm not doing too much." Sure enough, the next day I was shaky and my hands were numb and my head was "WEIRD ". So I rested a while and went fishing. Still felt bad but I feel worse doing nothing. This is a kick you ass sickness. The best thing is sleep at night, if you can. We get through the best we can and everyone is different. We can do this!!

[TCTC19]

Awesome! Well said!

[Bellesmom12 in reply to TCTC19]

Thanks! I have always been a very positive peson, but this nearly kicked my ass. At first I was like "If this is the way it's gonna be......." Then I quickly got tired of watching Judge Judy and Hells Kitchen and started focusing on getting better. Still a way to go but being around good people and my dog helps a lot. Thank God I was able to start walking again. I still start each walk with saying, "Ok, lets walk it off." Hope and pray all of us totally recover.

[Clara_Bell44]

Spot on! Positive attitude goes a long way to recovery. It’s good to hear!

[Bellesmom12 in reply to Clara_Bell44]

So far, so good. I have very good people and animals around me. I still have my days, but I know good ones are to follow. God bless ya! We CAN do this. I am going to be a grandma in December so I have to get healed up. My daughter has been my rock. Always positive AND she doesn't live really close to me. An hour away. Good distance! Lol

[Jmac999]

Great to hear! I am 6 weeks post treatment for Shingles VM. I tend to measure how I feel over the week rather than day to day. Every week i’m stronger, doing more and feeling better. Day to day I still have symptoms, some days feel completely exhausted and flat and need to stay on the couch but am learning to listen to my body and pace myself. And I find by focussing on other things I can distract myself a bit (2 small kids and running a business provide plenty of distraction!).

Today is a rest day and having Accupuncture to recover from the past 3 days of part time work.... definitely focussing on work, rest, recovery model.

[Bellesmom12 in reply to Jmac999]

Sounds like you are doing great. I went back to work in an insurance office on March 5. I left the hospital January 27. I live within 5 minutes of work so for the first month or so I came home and rested on my lunch hour. I have worked there for 39 years so everyone was very good to me. Very lucky that way.

This is an awful illness but like I said the more positive we stay the better. It can still get inside my head at times. I keep being afraid of a relapse every time I have a weird symptom. But the key for me is staying busy and talking even when I'm not sure what the hell I am saying. We got this. We can do it. We may feel like total crap, but look how far we have come.

[11765]

I was diagnosed with viral meningitis on June 29,2017. After about a week of severe headache I went to ER. Hospitalized for about a week.. I can't remember much, kinda list those 2weeks. Since then I still have short term memory lost. I also developed migraine and narcolepsy. Narcolepsy is a daily struggle even with meds.

Your post makes me think maybe I'm not crazy. Alot of people say to me that I'm " using" the VM as an excuse or sympthy. My husband sometimes thinks I make things up. My employer even told me "stop making excuses, that happened years ago". Comments like that really hurt. I've had "crazy brain" sometimes or I have to have you repeat what you said. I fall asleep at weird times. Some days are good others aren't. I have alot of symptoms you talk about. I'm thankful for this site. It helps me try to be possitive. You guys are my support. Thank you!

[clevehubbs in reply to 11765]

Hi to all you who suffer from minengitus

Please excuse my crude typing but I am writing this with difficulty and very small print on a cell phone Iam near blind and must use “dark mode’ to see ( also forgive the poor editing here by the end of this I could barely see )

the meningitus has damaged my hearing and its like being dyslexic of the ears

hearing loss has many added problems like demenia or emotional issues so combined with Meningitus its caused me to suffer awfull anxiety and depreesion

and I to have narcolepsy , ( had it before I was infected )

I was infected while in basic traing at fort Ord Calif in Jan 1969

I was so scared of having to repeat my 8 weeks of hell in that place I did what we were threaten to do Keep quiet about the way you were treated or youll be sorry.

So that I is what I did and as for the meningitus after effects I just lived with ( as bad as they were I was young and didnt realy try to figuer out why I was so sick like 10 days out of 12 feeling like crap and because I self medicated my illness with booze and hash It did help to survive. ( today I dont self mediate drink or smoke)

I went on to my traing as a cook and then Germany. somehow made it to my release in 1971

once I was out of the army I went to work but always was so sick back then many illnesses had not been clasified named nor accepted with any creditability and so you just went to work each day because you didnt know you were sicker than normal people I just pushed my body to keep working ( My dad really instilled the work ethic in me it was so crazy you should work till you drop dead and never wine about it and thats what I did ).

You know its really something how much humans can stand! when you dont know anybetter. Iam not saying anyone should be tuff and keep going. No because that Philosophy has made my life a nightmare I wish I had got help sooner .

about 45 years old I started reading about deporesion chronic fatigue syndrome and finally this minengitus of course when my eyes were opened to what happen in basic traing I had a name for my problem

Still when I told Dr’s about being infected they went balistic!! you dont have that!

Same with narrcolepsy OMG! thats one you dont want to try and prove!

So I kept on working and seeing out heloful doctors. untill finally in desperation I accepted the diagnosis of chronic fatigue syndrome and was awarded my Soc Sec

But that victory was bitter sweet age 53 I could now rest and sleep in fact sleep days in a row But in all my years of suffering bar none the worst problem was the back lash from critics! “You dont look sick! it must be nice to lay around all day!

“Yes can you imagine with my work ethic raising instilled in me these attitudes made me almost suicidal

And today age 71 they are still haunting me. Guilt about Im not really sick.

But why ? Let me explain:

the hearing damage has been shown to cause alkinds of emotional effects it has cause me horrible anxiety and guilt issues about am I crazy? Am I schizophrenic ? the answer is no to a reasonable degree But explaing who I am to myself and others isnt easy , and it dont help that still no one even nowadays understands this illness . and I would begin to think That I am a big fat lier ! and then feel so worthless ! because I loath being thought of as Lazy! ( I dont mind if others are tierd its or cant work its

not a problem as long as it aint me )

I noticed some of you using the term “Wierd Brain” I dont know what you really mean by that But when I read that I went “thats me !” I cant fully explain my symptoms but its wierd and different one day to the next

and soeaking Im sure for many of you its very confusing to live in a world where people are not logical I really think they aggravate our mental state by bullying and thoughless words abd deeds .

I really do try to be analytical about things and fair. I dont consider my self anove reproach I know Im not always right

But I find society is filled with Narcissistic controling crazy people. ( ever hear of the term gaslighting?)

At age 71 I still run into people daily that talk big about care of the elderly but turn around and abuse them!

So being my age and suffering from this thing Miningitus you would think I would find some sympathy . But its like the “Twilight zone “. when I try to skilfully express my important or pressing needs or that I am being abused they dont even respond. . natha!

Here is one basic example that I find mind boggeling There are noises that drive me crazy. I dont react quickly when they updet me I practice self controle

But take for example like cherry bombs,

where I live they light them all the time all around my mobil home year round but I cant catch the kids but they are getting more bold I was bringing in some bags from the car and two young adults in their 20’s threw not one but 2 cherry bombs a few feet behind my back it was pure trauma!

I was delirious and staggered back inside

to recopperate. this and orher noises are 24/7 Now youd think that would not be hard to put a stop to . Well when I reach out to find suport for this ( and I have tried every method of reporting it police manager ect.) I get Zero responce

The fire marshal said :” oh thats illegal“ but he don't fo anything

But more to the point about the old or sick why do I have to battle these attitudes? Why do I have to work so hard to get the attention of those who should care to start to care about loud noises and the stress ? why isnt it important ?

And the same for and all the incosiderate things seniors or those with meningitus deal with ?

I honestly am very tolerant and forgiving with people I hate conficts . But if I do report being abused or complain about any thing it dint make any sense to me, its like I said you feel like you have entered the: “Twilight Zone “! there Eyes glaze over. like from anotheer dimension

Adults and young people by and large just dont think a thing about your basic needs

They do so on their terms and not yours

these are the very ones who talk the most about careing for us. and feel their really doing some good when helping you by in their view is something you really need. they seldon ask you

I hadnt viewed this sight in a long time because of the flood of email I started to resent the sight ( not the people )

But I happen to take a min to read a few comments and was really drawn in by the things mentioned and particularly how they were not treated as if their illness was really that bad .and seeing that term “Wierd Brain” it touched a chord. and stirred my sense of fellow feeling for the mutal suffering discussed here.

So I know I have covered a lot of territory here but I hope someone else may relate to what I have faced.

weather your young or old When you are suck and have no support and are your not viewed as truthfull it doubles your burden!

and for some of you that are young and you are not taken seriouly And might think they doubt you based on the fact your to young to be tired .

I want you to understand an important point

I have learned over the years something about the

these critical people in your life the ones who hurt you and seem suspicious of your needung rest

I know they make you want to screem “I really am sick!”

but These persons are not really your friends! dont try to figuer out what you can do to get their approval. or gain their trust

but as for your peers I have found in life true friends are not that way with you , True friends care about you. they dont make you account for your productivity!

And another realistic tip and I really do hate to end this on a negitive note. Because as I read your encouraging interchange with each other you all advocate and practice being positive in thought and action. and for certain that has tremendous value.

But you must be realistic The world is made up of many selfish people and you will be very blessed if you find one real friend when you need one. Someone who dont judge you.

Youll find those kinds if friends in life among those who have suffer the most for they have develop real empathy and love

We do read about and know of many noble persons. The ones who stand by ther mates their parents and friends in troubled times ( even pets can out do some humans )

So Yes they do exsist and they can inspire us and when ever we can we should consider these accounts often

But at the same time when most of us look for or expect to find these sterling examples with in our circles, will we find them ? We hope you will, Maybe you did, But most of us wont find them. youll fund many nice people yes, polite courteous yes of course.

But other than your mother father or mate ( and thats something we all dont have ) your not likely to find the and you sometimes you dont know for sure untill the hour of need comes along

So if you have been wondering and looking and your finding out your regular friends have not come through

You could become bitter and distraught because you may think this is abnormal behavior and you could feel start to very bad about yourselve.

thinking other have these great friends innlife and I dont so ts because your unworthy? or s it because you were overly idealistic from the stories out there ?

But knowing the reality of human natuer can prepair us for or soften the blow

It mught help you be positive and patient untill you make or find loyal friendships allthough you need that now but you can still keep looking its bern calculating about one person in 2,000 is a real gem of a human being that mayor may not sound hopful but it is because that kind of person is likely to find you! they dont base there friendships on what they csn gain out of you. rather who ever gives them a chance to be a friend Good people want tofind other good people ( so Im assuming your one of those )

Thank you for allowing this old man to impart some of my lessons in life dealing with relationships and illness

I hope you can regulate your days to cope with your crumy days and the fatigue caring for your bodys needs

Feeling free to using the methods you have found best to get better when you rest and exercise without the worry about opinions of others

And I know people eill say: “dont worry sbout what other people think”

Do you really think that advise does much good? I dont and I know that people who tell you that know better

We all care big time about others and hiw they view us And unless you like being in solitary confinement you Will strive to make others like you!

why do people try to make you seem wierd because you care? True you cant do much about it but thats the tuff guy talk ones who cant say things like:

“I love you” Iam sorry”

Thats why it hurts so much because we care

May you have Peace on those bad days when you need to stay in bed and feel alone and misunderstood

[Bellesmom12 in reply to clevehubbs]

Yes, I rely on people a lot more than I used to. This is a very humbling illness. AND yes I do care what others think. I think we all do to some degree. But at the same time I also find that I don’t worry about things I used to. No time for a lot of it. I just hope it is not making me less empathetic just learning what I can and cannot do. I am learning to say no. The thing I miss most is being “the life of the party “. Just not there yet. Hope you find peace and contentment. Hope we all do as we continue our healing.