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.
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
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.
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.
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.
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..