Meningitis Now

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Grateful

4 months ago•23 Replies

Hi, I'm Val. I'm new. I saw this site late at night surfing since I couldn't sleep. I'm 20 years old and got sick with meningitis two years ago. Since then my whole life has changed for the worse. I am now profoundly deaf amongst many other symptoms. I see a lot of people say they are grateful and are moving on. I don't know how. I am angry, and depressed mostly. I was suppose to go away to college when I got sick. All my friends left for college and I got left behind. Now that I'm deaf I have no idea what the future holds for me. I think at times I'm going crazy.

I just went to the audiologist last week. My mom kept begging me to go over the two years and I finally went. I knew I was deaf but to have the audiologist say it to me made me go back into my black whole. I guess deep inside I thought maybe I'd be able to get hearing aids and function. She recommend me to go to an ENT for more testing. I don't want to go.

I want my old life back. I was happy then. I don't know how to be grateful or happy now. I would like to chat with others. I stay home all day long and do nothing. I wake up and eat a little something and then lay down because I'm tired. I could use a friend or two.

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Starry

4 months ago

Lots of hugs. You've had a really tough ride. Ive not suffered deafness but your comments really resonated with me. The after effects of vm have been life changing for me and i too want to get my old life back but find it hard to accept it is gone. I guess its up to me to build a new one but it takes a lot of energy to do that and it is hard to know where to start. I did have a little counseling and it probably has helped, so might be worth exploring that to help with the anger and trauma you have been through? I relate too to how isolated you must be feeling as well, my exhaustion and eating problems have cut me off from all my friends. I also relate to feeling sick to death of doctors! But if you can summon up the courage to see the ENT do try to, so you can either find a little hope or perhaps come to terms and start to make peace with things a bit? Anger is quite a draining and tiring emotion and if you can start to find a way, channelling that energy into recovery and something positive . But of course you also need time and space to mourn whats happened, its only natural to feel like that. Its all just really hard. Anyway, mostly just thinking of you xx

1 like

Valorrian

in reply to Starry

4 months ago

Hi Starry,

I don't know about counseling. It's hard for me to communicate with people now that I can't hear. I don't read lips or even know sign language. I've been in the house for two years. The first time I went out was last week when I went to the audiologist. I only went for my mom. She started crying and stuff and I agreed to go for her. I think I'm scared to leave the house. Isn't that silly? I'm actually scared to go out in public now.

I saw that you have balance issues and get dizzy. I do too. I also have some tinnitus. What kind of eating problems do you have? Over the last two years I lost about 20 lbs.

I worry now what will become of me. I can't go to college like this. I can't get a job, I'm not qualified to do anything. No one is going to want to hire a deaf guy. Will my parents have to take care of me for the rest of my life?

I don't want to go to the ENT. I am afraid of the ENT. I'm scared that they will find more things wrong with me. I know it is stupid but it's how I feel. My mom hasn't pressed me to go to the ENT yet. She is letting me digest what we found out at the audiologist.

She does want me to meet with someone to start learning how to sign. I'm even scared to go there. I know it will be one on one but I'm embarrassed to be deaf. I know that is wrong and shouldn't feel that way but I do. People are going to think I'm deaf and dumb and now I might be.

Thanks for listening. Hope to hear from you soon.

Starry

in reply to Valorrian

4 months ago

Well done for going out for the first time in 2 years, that must have taken a great deal of courage.

Its not silly to have these feelings they are a totally natural response after such a big trauma. I had symptoms of ptsd for months and i am not as badly affected as you.

But the feelings that helped when you were first ill may not be helpful long term and could end up trapping you in limbo, between the hearing world and the deaf community, which from the little I know is very vibrant. My best friends mum was profoundly deaf. She had a hearing dog, worked and was happy and fulfilled. It is possible, and you are still young enough to go to college, you just got an extra hurdle to get round first. My hubby just had a bad start in life and went as a mature student.

This is a link uk deaf counselling charity that does therapy that may have some useful general info for you and be food for thought. Perhaps you can investigate something similar in your area or find online counselling of some sort? signhealth.org.uk/our-proje...

For what its worth i get terrible social anxiety about going out and do find it much harder to be around people now because I look normal and know they don't understand. I have to carry a big blue coxxyx cushion round with me which is really embarrassing, actually totally mortifying, but if I dont I get really bad coxxodynia nerve pain. Over time I am gradually becoming a bit more matter of fact about it. Its just a thing.

On Saturday I plucked up courage and went to a ME sufferers social meeting for the first time. I was petrified but made myself go. Its been 2 years of hell and I lost touch with most all my old friends. I am really shy at the best of times. But I desperately wanted, no needed to meet people who just understood what its like, so I made myself go. It went ok, good in fact. Someone even admired how comfy the cushion was and for once I didnt mind. For the first time I felt I was among people who just accepted me for who I am now. I knew that they got it. I suspect you might find that sort of liberation once you learn to sign and start to meet deaf people your age. There was also a couple your age who'd met there and were obviously madly in love and getting married!

Perhaps you couldtry turning your thinking around a little... I think being deaf is something to be proud of actually, not embarrassed about. It shows how brave you'the ve had to be to get this far in your recovery.

With the ENT, I think the scariest thing is the unknown. What really is the worst thing that will happen? You are already deaf, it doesnt really get much worse than that in the world of ears. If they did find something its only something you have now thats caused the problem youve got. I do totally get the whole sick of doctor thing. I am finding it hard and you do start to lose faith a bit after seeing lots. But one or two along the way had real gems of wisdom and helped me a lot, so its always worth trying. I had to brave the gp phone line just now and justify to the dragon receptionists why I need the appointment of a doctor and not a nurse. Its taken me a week to pluck up the courage cos i find it stressful. Silly right. I need them to sign the form for the meningitis now alternative therapy which after a long stint of being utterly sick of doctors and treatments and shit I've decided to apply for. If i can do it you can

Eating issues. Well the extreme vomiting and the ibuprofen damaged my esophagus and stomach so i developed severe reflux esophagitis a few weeks after everything. Now i cant eat anything acidic or spiced on top of being nut allergic, fruit allergic, onion amd garlic and tomato intolerant and avoiding meat and gluten for the condition that I had the op for that triggered the vm. I pretty much live on oats veg and bananas. I used to love eating out but its a nightmare now. Of all the things its been one of the hardest to deal with, its so constraining. I really had a meltdown when it happened. I lost 9lbs in 6 days in hospital and more after when it happened, i went into the underweight section on the bmi as theres not much of me to start with and eventually i got diagnosed with disease related malnutrition. It took me months to stabilise and get my weight up. Im now 2lbs shy of where I started but stable. But the joy of food has definitely gone. Its sad, but somehow you find a way to cope.

1 like

Valorrian

in reply to Starry

4 months ago

Hi Starry,

I don't know anything about the deaf community. My parents took some sign language classes for me but I wasn't in a place to learn. I don't know any. My dad actually has refused to type or text message me any more. He told me to learn sign. He was really frustrated with me. He is over me behaving this way. I think my mom too. They would do anything for me. I feel like a jerk but can't help it.

My mom has set up a meeting for me to learn some sign language with someone. I'm really scared to go but I agreed. I will let you know how it goes after I see this person.

I'm glad you stood up to the receptionist. That must have been hard. I don't know how to stand up for myself anymore. I thought when I went to the audiologist my mom would take care of everything but she didn't. My parents drove me there but they made me see the audiologist by myself and talk to her. My mom made me fill out all the forms myself. I wanted to leave and run. It was so hard. The audiologist explained everything to me about my hearing loss before she even invited them in. She said it would be easier that way. I guess she was right.

I'd like to think that if I went to the ENT he'd say sure we can cure you. The worst would be that he'd say sorry this won't work for you either. You really will have to be deaf for the rest of your life. I don't want to be hopeful and then get let down. It's better to just not have any hope sometimes. I don't want to be disappointed. It really makes it worse for me and I spiral even further down.

Are you vegan now? It must be really hard not being able to eat what you want. I don't have that problem. I can eat it is that I don't really want to. I'm not hungry any more. My mom thinks I'm starving myself slowly. I don't know about that. I'd say that maybe now I look someone that runs a lot. You know that thin frame with not a lot of muscle.

Thanks for listening.

Starry

in reply to Valorrian

4 months ago

Its tough for loved ones going through these things too. My hubby only spoke a long time after about how hard he found it when i was in hospital. One thing with me is i still get food anxiety and sometimes that comes out im that have to reclean things in the kitchen cos i get so stressed and recently he said he just wont help me anymore. Its tough cos at the moment i am so wiped i dont the have the physical energy to do it amd igs stressing me out. He thinks it better not to feed the anxiety himself i guess. I find it hard though, cos i do try harder than he realises, just sometimes you don't win every battle with how you're feeling do you? . I guess your parents are trying to help in their way too, but i bet it can still feel hurtful.

Yes i can understand why that would feel really tough to get through with the ENT. But maybe its something you just need to do and get the other side of to move on? . It sounds like you coped actually pretty great at the audiology place, especially when its such an emotive stressful thing for you to have to handle. I have always thought doctors try to be really straight with people and not get hopes up and you can tell them at the start how you feel so they know to be honest. I had to have a risky major surgery right before my vm and the consultant was very honest about all the possibilities good and bad. Its good because i do at least have peace of mind now, even after getting the meningitis that i did the right thing having the surgery and there weren't any other options left i could have tried.

My GP was frustrating today. More bloods, had the 'are you depressed' conversation for the umpteenth time and then the guy admitted he was a trainee and asked me to come back another day to see one of the experienced doctors. Joy. It was almost funny, i felt sorry for him, my medical notes are so long now he couldnt find anything.

Im vegan, except for i can eat the odd egg and with my nut allergies i do sometimes to keep protein intake up?

Not wanting to eat is hard. I did have a phase like that, and i get like it when my fatigue overwhelms me too. Partly it was all just too hard and partly maybe it was expressing how shit i felt about everything, to eat meant caring enough to bother, i guess that is a sign of depression, so maybe one to watch amd challenge yourself on if you can. It was really hard actually even when i did try to gain weight when your body is intolerant to junk food. And deconditoning is a nightmare, i feel I am so puny now.

You mentioned running, do you enjoy that? All the exercise i can do atm is walk my dog round the block. And ive not managed that this week as ive had such a big relapse. Today I managed to stay out of bed all day though so hopefully the worst is over and i will get back to where i was before the setback before too long. It did scare me a bit so I have been careful to rest up properly. I do worry about my job given this is the second setback now, seems my goal may be too hopeful. A bit of me is so tired it wishes they'd put me out of my misery cos its so hard to keep going but then what would i do all day..

Lippistix

4 months ago

Hello Val,

So sorry to hear of your position after so long.

If it helps to read, here is an account of my daughter Rosies' recovery from VM, below..she is 29.

.....I wanted to share my success story as I feel my treatments may help many others with similar symptoms that I had…..I had viral meningitis nearly 2 years ago, I suffered long term after effects such as head aches, stiff neck, dizziness, anxiety, depression, mood swings, bad memory, lack of concentration and most frustratingly mainly no energy whatsoever 😞I was stuck in a rut and didn't know where to turn to for help to feel better until my mum found this charity, Meningitis Now. I started having acupuncture in may this year as my mum spoke to a nurse that said it was a good thing to try for post viral meningitis which has been a huge help for my recovery in many ways and thanks to Meningitis Now I am also currently having complementary cranial osteopathy, I have had 7/10 sessions so far which has worked wonders and I honestly feel nearly 100% better, I throughly recommend both treatments for people suffering post VM after effects, it has been a long time since I felt back to my old self before I was ill, Meningitis Now have been a huge help and so supportive and understanding where as a lot of people don't realise that it can leave long term damaging effects, I lost friends that I thought were best friends that didn't believe I wasn't well and made me feel stupid and that I was probably just overreacting but it really was a relief speaking to the people at Meningitis Now and people understanding exactly how I was feeling and willing to help, I have attached my story that my mum sent to the website as I was asked to post it on here incase anyone feels it may be useful to read😊

Lippistix

in reply to Valorrian

4 months ago

Hi Val,

You can find my daughter Rosie S' Story, via the link on the forum stories from the home page. Or google Rosie S's strory Meningitis Now, and it should come up on the search engine.

Cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie was pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Best wishes

Teresa

Amrita-A

in reply to Valorrian

4 months ago

I bet you could do lots! Maybe not easily, but doors might open for you that you have never even dreamed of. Writer, software programmer, lab technician, database management, online sales, artist, accountant, designer, chef...

One thing that I am learning, meningitis or not, is that I need to ASK for help et cetera from others and that connections are a really important thing.

Perhaps this sounds like a stretch for you, but you could find a place to do a little volunteering to build up your confidence and maybe explore options. One of the places I volunteer is a donkey sanctuary and I don't need to be able to hear to do that.

Another thought I had is to contact a hearing society or association and talk to them about your experience. I have a friend who is deaf and she actually works for the association for the deaf. She drives a car, lives independently, adopted a little girl from China and owns her own house. She has never had hearing. Her mother laboriously taught her to speak when she was a child.

Sending you lots of encouraging love.

Valorrian

in reply to Amrita-A

4 months ago

Amrita-A,

I've never met a deaf person before. I never thought about how they would live in a hearing world. I know this is going to sound stupid but I saw you said that deaf people can drive. I use to drive before but haven't since. Do I have to take the test again to drive now that I am deaf?

I don't think college is a consideration for me now. I think first I need to figure out how I am going to communicate and get over some of this depression and anxiety. I don't think my brain is the same as it was before. I think I'm slower in processing and my concentration isn't good. My mind wonders and I find that I'd start to do something and then forget what it was I was doing and do something else. I don't know if its a symptom of meningitis or depression or both.

Thanks for the encouragement. Volunteering...wow. My heart races just thinking about going outside of the house. I'd have to interact with hearing people. They would have to know I can't hear. I don't know where I would volunteer. I need to pray about it and think of a place.

I haven't seen anyone talk about God here. I don't know if people believe or not. I use to believe, I guess I still do. I just don't understand why God would let this happen to me or anyone for that matter. I think sometimes that God is too busy for me.

Thanks for listening.

Amrita-A

in reply to Valorrian

4 months ago

Hi Val,

I just saw your message now. Such interesting things to share! I have a strong belief in a creator that I do call God. I believe that we were created out of love and that we carry that within us no matter what. I really don't know if us getting sick or injured or whatever is part of a Divine Plan or just circumstantial. What I do know is that finding something good in life and gratitude, yes, gratefulness, goes a long way to establishing peace in your heart. It feels terrible to feel angry and depressed all the time. It leads to more anger and depression. I have a lot of ongoing symptoms and I feel quite fragile. I am not happy that this happened in my life, but I know that I allowed myself to get very run down and was a sitting duck for a major illness. That's my fault. But do you know what? I feed the chipmunks in my backyard every day and I love them so much! I'm really grateful for them. I subscribe to this:

gratefulness.org/practice/w...

and every morning it gives me something to contemplate. I read it before I get out of bed.

I don't imagine that God is ever too busy for you. I think all distance from God is on our end.

The mind's default is to go towards the negative. It takes effort to commit to finding positives and gratitude, but it is well worth it.

Now that you have made a big step and gone out of the house, what about going for a walk to the end of the street and back? If you are nervous, maybe your Mom or Dad could go with you.

Start small and work your way up, in all aspects.

One thing that I find very rewarding is making a to-do list. There's a lot of satisfaction in checking them off. Start small.

As Starry mentioned, I would definitely see the ENT. Not with the hope that you will be cured, but as a step on the way to finding your groove again.

Do you have any pets? They are good therapists!

Are you spending a lot of time on the computer? Screen time is not healthy for the brain or psyche, so if the majority of your day is spent looking at a screen, you really might want to balance it with some fresh air time. Do you have a yard you can sit in? Do your parents have a garden you could help out with? Do you help with household chores? These small things can help you to feel that you are making a useful contribution and will in turn boost your morale.

You've got good support here and people have offered great suggestions. Please take them to heart and consider acting on some of them. One thing is for certain, if you do nothing, nothing will change.

Your parents love you and are concerned. Maybe if you all act as a team, you'll feel better.

That's all I can think of for now. I'll keep replying as ideas come. Chin up.

Amrita

Valorrian

in reply to Amrita-A

4 months ago

Yes, we have a back yard. We don't have a garden. My parents pay someone to take care of the yard. We have a pool and I thought of swimming but my parents told me I'm not allowed to go into the pool if someone isn't watching me. It's like I'm 5 years old. I don't have chores. We have a housekeeper. Everything is basically taken care of for me.

I do make my own breakfast and lunch. That is what I do. Not sure if that's something or not. It isn't fancy. For breakfast maybe yogurt, and for lunch a sandwich.

I just started to come on line more often in the last week. I was hoping to talk to some people here and make friends. I guess it's starting to get to me being by myself all day long. I am not online a lot. I do like to read though. I watch netflix a lot. I'm currently working my way through all the Marvel series. I can't do two things at once any more either. So when I watch TV I really have to watch the TV.

Someone ( I can't remember the name) suggested that I start a journal so I can see my progress and a check list. I don't have anything to check off on a list. It's funny you said list because my mom made a list of things she wanted me to do last week. The first was go to the audiologist and we did that. The next thing on her list was meet someone that was going to teach me sign language. She is waiting for me to get in contact with the person to set up a meeting. I haven't done it yet though. I'm thinking about it. The other thing was go to the ENT. Now that I don't have control over that. My mom has to make that appointment for me. I did talk to her last night and told her I'd go. She seemed so ...I don't know, relieved. I'm not sure when the appointment will be though. I guess she will let me know.

We don't have pets. We all were so busy before that we just didn't have time for a pet. I have always wanted a dog though. If I had a dog, I could take it out for walks and stuff. That might help.

1 like

Amrita-A

in reply to Valorrian

4 months ago

Well, I am just so proud of you!!

I know it is a leap to go to the ENT. Maybe your reward could be a tea or coffee out with your mom after. Do you have a list of your own on the go? It could be something so simple, like make your bed. It's really the pleasure of accomplishment at play here.

It sounds like your parents are worried that you might get dizzy or have vertigo in the pool. They love you and are worried about you. Perhaps after a few times in there when you both feel confident, you can be on your own.

I'm glad you found something you like on Netflix. I can't think in the same complex ways that I did before meningitis (yet) or multitask (yet). Hopefully that will come in time. I still find typing difficult, but it is getting better. I still have lost my ability to spell and in speaking I often say the wrong word or can find the word I am looking for. Our precious bodies have taken quite the beating so I am trying to be kind with myself and marvel at the fact that I am actually still alive when I felt pretty sure I was having my last day on earth. Not to say I don't still feel wretched, because I do. I was supposed to have my music lesson today and go to a friend's after and I had to cancel both. Right now it is taking all my energy to do the things I must do.

You mentioned always wanting a dog. Maybe the time is right now? Just an idea, but if you get official approval from your doctor, your dog could be a therapy dog, wear a vest and you can take him/her with you wherever you go.

I hope bit by bit, every day you can find something worthwhile. I read a quote today that I thought applies to us all "There are only two ways to be happy: minimize your needs and harmonize with the circumstances". That really hit me when I read it.

You never know, Val. Perhaps someday you will be the inspiration for a young person who has lost their hearing.

Best wishes,

Amrita

kalirachi

4 months ago

Hi, I don't know the details of your hearing problem but like you I contracted VM two years ago. The continuing after effects just seemed relentless. I had all sorts of hearing problems including tinnitus, and losing the hearing in one ear. Eventually the hearing returned but the virus damaged the vestibular nerve which left me with what appears to be permanent dizziness and balance problems, but the hearing did eventually return. It took the NHS a year to arrange an appointment with an ENT consultant who was pretty useless. Many of the very unpleasant symptoms have now either lessened or I have just learned to live with them. Frustrating though it is, you must keep pressing for further investigations as quite often these problems can be of a temporary nature. The arrogance and dismissive attitude of many consultants means their initial diagnosis is often completely wrong as I have discovered. Be strong and try to remain positive!

Barb3171997

4 months ago

So sorry your going though all this at such a young age, but there is so much you can still do in life. I was 36 when I was hospitalized for over 2 1/2 months with VM alittle over 21yrs ago. I'm 58 now and have a lot of unexplained illness and ups and downs with depression. But I also have done many things that I never thought I would be able or could do. I suffered with having no energy and some small aftereffects for about a year atfer leaving the hospital, but jumped right back into my very busy crazy life I had before VM. In June of 2000, I packed up 3 households of stuff and drove the biggest Uhaul you could rent, towing a car behind me across the United States. Went another 3yrs working about 50 hours aweek, going mountain biking, camping and walking , living what i called my "NORMAL LIFE". August 12, 2003, my son handed me my first born grandson (he was about 3 weeks old then) for what I thought would be for a couple of hours. Well those couple of hours turned into 13 years of me raising my grandson by myself. He was about 4 months old on October 31, 2003 when my first unexplained medical problem hit. I have some hearing loss from a serious earache that hit me with no warning at all. I had no symptoms that but intended up in the ER that night, it so bad they wouldn't touch it. They called in a specialist who couldn't even take the time to put me to sleep or give me something to help with the pain before he put a tube in my ear it was so bad. Had to get a shot of antibiotics 5 days aweek for a year. Almost the same day I got the first earache a year before, the same thing happened to my other ear, never had a earache in my life till then. Sorry, had about an hour of my mind and fingers working together to what I hope is making some sense of my story. What I'm trying to say is, I've raised my beautiful, but very active grandson by myself into a 15 year old teenager after having VM and suffering though alot of unexplained medical problems. So please don't give up on your future. Have you thought about taking some college courses online? It's very easy for me to fall into back into a deep depression and lock myself in my apartment and do nothing but lay around and sleep if I allowed myself to. But I make myself get up and get on my tablet everyday. I play a lot of different types of games on my tablet that requires me to really focus on timelines and stuff. And after me finding this life saving page and talking with others that have gone or going though the same issues as myself has helped so much! Please know your not alone and you can message me anytime you need a friend. Hugs to you

Amrita-A

in reply to Jasaaas

4 months ago

Hi Eve,

I can't stop thinking about the 2 of you (Valorrian and you). 5 weeks is not long at all. Your lives have changed drastically, but you both have so much life ahead! You have lots of recovering yet to do, so take very good care of yourself.

I hope that you both can find someone, something, to inspire you and help you to see that you still have so much potential. I think of people like Helen Keller. Have you ever read any of her quotes? She was an amazing lady. Although deaf and blind, she had favourite symphonies that she would "listen" to. Do you know Evelyn Glennie? She is one of the worlds top percussionists and she is profoundly deaf. There is a young girl, Turia Pitts, in Australia who suffered severe burns from a bush fire during a marathon. Although I am an older lady, she inspires me every day. I encourage you both to check out these people. Firstly, they did not expect her to even survive with such extensive severe burns. Then they said she would never walk. She has had many painful surgeries to reconstruct her face and she is missing many fingers, but she has never accepted that she can't do.

Take advantage of whatever resources you can find that will lend a hand.

Please keep us posted about your progress and journey.

Sending you much love.

Amrita

Grateful

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