My fears [TRIGGER WARNING]

[Topher3]

I appreciate you man. Just wish I agreed. I’m not present for my wife. Today she said, for my birthday, I want just one happy day start to finish. Where something doesn’t bother you. That makes me sad. We used to ask each other about our day and talk about everything. I can’t do that anymore. I’m so lost in my own mental hell i can’t participate. I told her tonight, I just keep thinking about how this is forever. And even though I’m good now, I am just looking at my daughter calculating how long I’ll live to see her grow. Every day I do that. I’m not the father or husband I want to be because of this. I could have been so much better, that gets me so much. I do t go out because I fear my eyes getting bad. So I don’t take my daughter out of the house as much as I should. That will only get worse. I feel unfit to give her the best life possible. I could go on. I’m just constantly sad, filled with guilt, ashamed, I just hate it.

I think the MOST important thing for you to do in regards to trying to maintain your relationship and keep it happy and healthy is, stop talking about your eyes. Just stop. I’m sure she’s heard everything that can possibly be said, over and over and over and over again. That’s what I had to do, just stop you will eventually push her away. It’s great to use this site and vent and talk, but please you have to give your wife a break. Can you imagine living your life how it is now without your wife and your child there. It maybe seem like “well I’d probably prefer it for their sake so they don’t have to go through this” but they love you and want to be with you. You HAVE to stop having those same conversations. And the best part about not talking about it DOES actually help with a distraction no matter what you or anyone says it does because I have been there and lived it. I was a complete emotional wreck I have bi polar, borderline personality disorder and Depression. So you can just imagine the ****ing shit storm this was when I had to quit my job and be house bound for a whole year with my eyes shut. When I stopped looking at my eyes in the mirror everyday, when I stopped talking about it to my fiancé, when I would literally punch myself in the face every damn time I thought about it I was completely bruised my whole ****ing face black and blue, It actually started to get better that’s what it ****ing takes to change a mind to literally beat the shit out of yourself to control the thoughts (for me at least). So it’s going to be hard but you just have to try and stop living in your mind about it cause guess what? you’re ****ing living it physically isn’t that enough?! Your wife’s whole attitude will shift, I bet at the moment she seems like she doesn’t care as much or she’s being blunt but that’s because she’s heard it all a million times. Trust me brother teaching and training yourself to not mentally live it as hard will change everything. If someone with bipolar, borderline personality disorder and extreme depression can do it I have all the faith in the world that you can do it to my man. Sorry if it sounded blunt but it’s the truth also take a month break from this site and tell me how you feel because being on this site is just living your hell in a virtual way too

[Guest]

I think the MOST important thing for you to do in regards to trying to maintain your relationship and keep it happy and healthy is, stop talking about your eyes. Just stop. I’m sure she’s heard everything that can possibly be said, over and over and over and over again. That’s what I had to do, just stop you will eventually push her away. It’s great to use this site and vent and talk, but please you have to give your wife a break. Can you imagine living your life how it is now without your wife and your child there. It maybe seem like “well I’d probably prefer it for their sake so they don’t have to go through this” but they love you and want to be with you. You HAVE to stop having those same conversations. And the best part about not talking about it DOES actually help with a distraction no matter what you or anyone says it does because I have been there and lived it. I was a complete emotional wreck I have bi polar, borderline personality disorder and Depression. So you can just imagine the ****ing shit storm this was when I had to quit my job and be house bound for a whole year with my eyes shut. When I stopped looking at my eyes in the mirror everyday, when I stopped talking about it to my fiancé, when I would literally punch myself in the face every damn time I thought about it I was completely bruised my whole ****ing face black and blue, It actually started to get better that’s what it ****ing takes to change a mind to literally beat the shit out of yourself to control the thoughts (for me at least). So it’s going to be hard but you just have to try and stop living in your mind about it cause guess what? you’re ****ing living it physically isn’t that enough?! Your wife’s whole attitude will shift, I bet at the moment she seems like she doesn’t care as much or she’s being blunt but that’s because she’s heard it all a million times. Trust me brother teaching and training yourself to not mentally live it as hard will change everything. If someone with bipolar, borderline personality disorder and extreme depression can do it I have all the faith in the world that you can do it to my man. Sorry if it sounded blunt but it’s the truth also take a month break from this site and tell me how you feel because being on this site is just living your hell in a virtual way too

This was an honest post, I cannot hate it. You remind me of myself. When you said you punched yourself in the head, I laughed. Not cause it’s funny, because I would do the same thing. I understand that level of desire to quit doing something that you’ll beat it out of you.

I’m bipolar, extreme depression. Had my first rapid cycling episode ever. Was hallucinating, the whole deal. Since that happened, I haven’t been the same. It’s not an excuse, you’re right, I gotta chill the tuck out. Just hard to function when you think about killing your self a dozen times a day. As I’m sure you understand.

Homesrly, I’m beyond beating myself in the head. I need chemical intervention. How old are you might I ask? Do you take any meds for it? Im 38...I could get away with this shit 10 years ago, not now. Now, it’s diferent, it’s worse.

[Topher3]

This was an honest post, I cannot hate it. You remind me of myself. When you said you punched yourself in the head, I laughed. Not cause it’s funny, because I would do the same thing. I understand that level of desire to quit doing something that you’ll beat it out of you.

I’m bipolar, extreme depression. Had my first rapid cycling episode ever. Was hallucinating, the whole deal. Since that happened, I haven’t been the same. It’s not an excuse, you’re right, I gotta chill the tuck out. Just hard to function when you think about killing your self a dozen times a day. As I’m sure you understand.

Homesrly, I’m beyond beating myself in the head. I need chemical intervention. How old are you might I ask? Do you take any meds for it? Im 38...I could get away with this shit 10 years ago, not now. Now, it’s diferent, it’s worse.

I understand brother, it’s so very hard. And I’m proud of you for still being here. Yes unfortunately my pain thresh hold is so high it took so very much to help rewire my brain to think a certain way, it just takes months and months and months of extreme management and the want and commitment to succeed. Ill be honest I do still struggle but I’ll tell ya I’m 100x better than I was and that’s a reason for me to get up everyday and try and owe myself the best life I can give myself because We’re all gonna be dead for a long time after our life. The reason I was so blunt is because this disease has taken so much from you I couldn’t stand to think of it taking your wife and kids, and firmly stand with what I said before the mind is ****ing insane man I totally get it but you Need to try and try and try (not saying you’re not) but you just gotta brother or there won’t be anything left. You’re a smart dude I can see that just gotta startand yes chill the **** out someway haha. im 25 years old, suffer from multiple mental illnesses lost my dad when I was 9 watched him die, and my mother abused me after my father passed away. Felt like an orphan since 9 years old and has been very hard to cope and change my thinking patterns.

I was taking king seroquel for a few years but have stopped it now as I’m trying to find a better medication that’s doesnt knock me around so much. Yes you’re right bi polar is a progressive disease, if not treated can leach out into various other problems depending on severity’, I’d have a look at seroquel an anti psychotic you could very well be too far gone for self maintenance and an antipsychotic May be able to allow you to have the opportunity to work on your self a bit better. Being retired must help a little with the financial aspect. Try and be grateful even if it is super hard to find the positives :-)

[Guest]

I understand brother, it’s so very hard. And I’m proud of you for still being here. Yes unfortunately my pain thresh hold is so high it took so very much to help rewire my brain to think a certain way, it just takes months and months and months of extreme management and the want and commitment to succeed. Ill be honest I do still struggle but I’ll tell ya I’m 100x better than I was and that’s a reason for me to get up everyday and try and owe myself the best life I can give myself because We’re all gonna be dead for a long time after our life. The reason I was so blunt is because this disease has taken so much from you I couldn’t stand to think of it taking your wife and kids, and firmly stand with what I said before the mind is ****ing insane man I totally get it but you Need to try and try and try (not saying you’re not) but you just gotta brother or there won’t be anything left. You’re a smart dude I can see that just gotta startand yes chill the **** out someway haha. im 25 years old, suffer from multiple mental illnesses lost my dad when I was 9 watched him die, and my mother abused me after my father passed away. Felt like an orphan since 9 years old and has been very hard to cope and change my thinking patterns.

I was taking king seroquel for a few years but have stopped it now as I’m trying to find a better medication that’s doesnt knock me around so much. Yes you’re right bi polar is a progressive disease, if not treated can leach out into various other problems depending on severity’, I’d have a look at seroquel an anti psychotic you could very well be too far gone for self maintenance and an antipsychotic May be able to allow you to have the opportunity to work on your self a bit better. Being retired must help a little with the financial aspect. Try and be grateful even if it is super hard to find the positives :-)

I appreciate the honesty man. The doctor I’m seeing wants me on lamictal. I’m afraid to take it because it has a .01% chance of getting Steven Johnson syndrome. If I think floppy eyelid is bad, holy hell I could handle SJS. But I am way past self maintenance. Lifting weights, strict diet and lots of marijuana aren’t working anymore. I’m also withdrawing from Xanax that I was prescribed when all this started. I’m almost off of that thank god but it’s definitely not helping the mood swings. I need the lamictal. I just don’t know how I can convince my dumb ass to take it.

I really appreciate it. I hope I get to the point you’re at soon. Happy that I’m better and just try to move on. You’re right about the site too. It can get me down. It’s hard hearing other people’s failures and struggles sometimes, because it just reminds me of my own.

I’m glad you’re doing better and function well without medication. That’s the kind of stuff that makes me feel better. I get my cpap tomorrow too so hopefully I’ll finally get a decent nights sleep. Maybe that will help too.

Gotta add this..,on my good days, being retired is easily recognized as a blessing. On bad days, it almost pisses me off because I can’t even enjoy my money, house, car, etc. I get so mentally ****ed up knowing I can afford things, yet I can’t sctiakly do them. It’s been better recently. But I’m just afraid it won’t last forever. I’m thinking the medication wil help with that.

[Guest]

SAAG

Thank you for the kind words. I very much appreciate that you came in here and set me straight. I’ll try to start viewing things differently. You know, my dad always had this saying about taxes. He said, most people hate paying taxes, I love it. I Asked why? He said, because if I’m paying taxes, I’m making money. It’s a really good way to frame something you probably hate. I’m going to try to look at myself as strong rather than weak. However I have to convince myself. I just genuinely think I need medication because I am bipolar. When the injury/trauma hit, my disease went to it’s all time worst. I was hallucinating, rapid cycling (jumping from depressed to manic in a matter of minutes), suicidal, psychotic, couldn’t sleep, couldn’t eat. The hallucinations were the worst. After that, I haven’t been the same. I need lamictal. I believe my psychiatrist is right. It doesn’t dismiss my pain, but he thinks it will help me cope with it better. I’m just so afraid to take it because of the warning of possible Stevens Johnson syndrome.

I have a lot to work on. My sleep apnea and my mental illness. There’s a good chance if I tear these properly, I could have a better life. I get my cpap tomorrow. The pills, I’m still trying to figure out how to get them in my mouth.

How are you doing lately? Is there anything that specifically helps you deal with those thoughts that you’re not a good enough spouse or parent?

[Guest]

Dowork123 Well, if you have bipolar then I totally understand why you'd say you have mental illness since that definitely qualifies... just make sure you advocate for yourself and refuse to let anyone gloss over or minimize your eye problems. Your eyes should be taken seriously and NOT assumed to be exaggerated because of your bipolar, and don't let anyone make you doubt that you need help with treating your eyes in addition to the mental side of things you're dealing with.

[Guest]

This is hard, but surely the future will get easier.

[ebi1368]

Relentless persistence. I heard that phrase yesterday and I'm adopting it hehe Because relentless persistence is exactly what people like us need.

I want my life back... I had it back for 4 glorious years (2014 to the 2018 funeral when my eyes went to hell again), and I will fight like hell to get back to that state of affairs once again. I don't know how long it'll take, but I hope it's possible.

I'm only in my early 40's and I'm hell bent on getting my fair share of good years of life.

Dowork123 Since you're retired, have you considered going to the topics? We lived very cheaply in Malaysia (Penang and Kuala Lumpur), Thailand (Chiang Mai), Vietnam (Ho Chi Minh City and Hanoi), Mexico (Playa del Carmen) and Costa Rica... once you get your bipolar stabilized again, perhaps something like that is an option... it's one hell of an adventure, the high humidity can be amazing for dry eyes and one can have an excellent standard of living for a fraction of what the same would cost in Canada or the U.S. Mind you, maybe go on a 1-month trial visit to the tropics to see if your eyes feel better in such a climate before doing anything drastic (choose a place with good, clean air, too... some places have this only seasonally)

Hi SAAG

I read many of your posts here. You are such a strong person and a damn good writer.

You said you have corneal neuralgia. How do you know you have corneal neuralgia? Most of the time I do not get any relief from eye drop. Is that a sign?
Is there any doctor in Canada who can tell me if I have corneal neuralgia or not? I also did lasik and have rosacea.

[Guest]

I don't have the link for that handy now... but if you do some creative googling, you'll find it eventually.

[ebi1368]

Thank you so much for your thorough message. I hope your eyes get better too.

[Guest]

SAAG

if you can convince my wife to quit her job, I’m out of here lol. That’s the issue. I can support us both I definitely, but she can’t be stuck at home with me. Also not Pershing the career she worked so hard for. She’s an English teacher and she loves her job. I’ve tried several times to get her to leave. Isn’t happening until later in life sadly. Maybe if things got insanely bad, I think she would move for me, not sure we’re there yet, but close.

I would love Marbella Spain. I hear it’s great weather, lots of Brits, speak English, legal cannabis. Sounds like a beautiful place. Hopefully one day. At the moment though, I’m getting such good eye care I’m Chicago, I am afraid to leave. I have so many options for drugs and treatments at UIC. The doctor there is also watching my T cells, cytokines and chemokines to see if the immune response is falling as a result of the drug therapy. Every time he checks, my immune markets are going down. So things are moving in a positive direction. I couldn’t imagine being in another country without my meds. And the heparin cannot be froze and it expires in 28 days. So that sucks. But again, I’m just happy I’m not I’m pain right now.

Im really sorry you are feeling badly however. I agree with Ebi, you write so well and handle this so well, it’s amazing. I know you’re not perfect, but you’re kicking ass, it’s nice to see. Yes, don’t feel guilty for saying no to travel. That’s something I guess I’m good at, being selfish. I’m pretty aware of what I can and can’t do, probably another reason it’s so mentally hard. But your health is the most important thing when you have eye problems. It’s not like a bum hip you can take a pain pill and jist sit and read. Not to downplay other types of pain, but eye pain is a special kind of bad. I think recognizing that is important for you. Lesson learned.

Im hoping soon you get things back on track. I don’t know how you only run a week of steroids, that would do literally nothing for me. I’d need a month lol. But again, I hoe things hit an equilibrium for you and the eyes cool out.

That begs another quesrion, when you’re at home eyes shut all day, how do you cope with that? I told my wife, I love you, but being around you and my daughter with my eyes closed all day, I can’t do that. It’s not enough for me.

Thanks for sharing, your posts are great.

[Guest]

if you can convince my wife to quit her job, Im out of here lol. Thats the issue. I can support us both I definitely, but she cant be stuck at home with me. Also not Pershing the career she worked so hard for. Shes an English teacher and she loves her job. Ive tried several times to get her to leave. Isnt happening until later in life sadly. Maybe if things got insanely bad, I think she would move for me, not sure were there yet, but close.

Ahh, that makes sense. Well, at least it's an option to consider in future.

[Guest]

[USER="3809"]

I would love Marbella Spain. I hear it’s great weather, lots of Brits, speak English, legal cannabis. Sounds like a beautiful place. Hopefully one day.

Well, this place is only about 5 hours away from the Vissum clinic in Alicante - and that place seems to me like the kind of place where one could get good care for severely dry eyes. So, Marbella definitely sounds like it has potential as a place to live longterm. Spain is beautiful - great food, nice weather in southern Spain, and I don't think the language would be impossibly hard to learn if one planned on staying longterm. And besides, there's always the Google translate app for help in the meantime hehe

https://www.vissum.com/en/our-centers/vissum-alicante/

Good doctor: https://www.vissum.com/en/medical-te...l-alio-y-sanz/

Doing research on ocular surface disease including dry eye: https://www.vissum.com/en/research/

And as for the bipolar side of things, this isn't what I'd consider a rare issue, so I bet you could find a psychiatrist in Spain who could continue your care for that, too.

When you're feeling down, daydream about life in Marbella some day in the future when your wife retires ... And if she really loves teaching, maybe after she retires from traditional work, she could tutor online, create online courses to help people improve their skills, etc. ... if she wished to continue teaching for a while longer :-)

[Guest]

Well, this place is only about 5 hours away from the Vissum clinic in Alicante - and that place seems to me like the kind of place where one could get good care for severely dry eyes. So, Marbella definitely sounds like it has potential as a place to live longterm. Spain is beautiful - great food, nice weather in southern Spain, and I don't think the language would be impossibly hard to learn if one planned on staying longterm. And besides, there's always the Google translate app for help in the meantime hehe

https://www.vissum.com/en/our-centers/vissum-alicante/

Good doctor: https://www.vissum.com/en/medical-te...l-alio-y-sanz/

Doing research on ocular surface disease including dry eye: https://www.vissum.com/en/research/

And as for the bipolar side of things, this isn't what I'd consider a rare issue, so I bet you could find a psychiatrist in Spain who could continue your care for that, too.

When you're feeling down, daydream about life in Marbella some day in the future when your wife retires ... And if she really loves teaching, maybe after she retires from traditional work, she could tutor online, create online courses to help people improve their skills, etc. ... if she wished to continue teaching for a while longer :-)

Sorry for the delay, I wanted to put appropriate time into a response. It’s good to know there are places I can go. But day dreaming about Spain sadly doesnt help much. Mainly because I’ve put off my happiness thinking I could do these things later in life, now look at me. So there’s this anger I have with myself not living my life, and putting it on hold for some later date. A date that may never come now.

That being said, id love to move now. I’ve offered to just pay her salary but she doesn’t want to stop working. She worked hard to be an English teacher and she enjoys it. Fair enough ya know, I can’t ask her to leave what she loves. But I’ve been asking her to do that for years, I’ve been wanting to move to California forever. I just feel we’re too young to make those moves now but damn do I want to. If I was single I’d be gone yesterday.

[Guest]

Being on my phone I can’t quote these threads properly, I can barely spell check on this phone lol. I’ll do the best I can scrolling!

I want ant to address the God aspect first. I do not believe god exists in any manner that humans believe today. That doesnt mean there is no god, but like you said, I’m not banking on an afterlife and a guy with a big gray beard to welcome me. So yes, this is my only chance at life. My only chance at a conscious experience. But I don’t see it the way you do. When I die, I’m gone. And to be fair, at least with respect to my consciousness, I’m not going to be here to care one way or another. So for me, I don’t mind death. I know it’s goijg to happen regardless, Why drag it out? I care more about how bad life can be rather than how bad death can be. You’re right, you could argue that the future may be better. But to what end? To eventually just get more sick. It’s a tough one...not having an understanding of why this happens (human life) really makes it hard to see a point to it all. I literally broke down crying yesterday and thought, what’s the point of all this suffering. Makes no sense...I am stupid in relation to any possible creator, yet I could have designed a better system than this.

Not to scare you further on the steroids, but if it were cataract I wouldn’t care. A cloudy lens can be replaced, of course neither of us want surgery, but there is a fix. However steroids cause glaucoma. Which is irreversible blindness. There’s no fix for that once you’ve lost vision. Please use the steroids in you need, but yeah, it sucks that the only thing that helps comes with that huge of a risk. I’ve been on them for 5 months now. My pressure was 13/14 it jist went up to 21/23. So we have to watch it now, worries me because dr Jain said I still need them because of my lids. I don’t want to add glaucoma meds.

I may try walking like that, but it’s hard for me to function when I’m that bad. I honestly don’t know how you do it. There were a few times when my eyes were so bad I just rolled the windows down in my car and dealt with the pain because it never went away anyway. But that always made things worse. So I hunker down and try keeping my eyes closed and wet. Those tones were so depressing bent basically shackled to a bed. Ugh!

As as for the chocolate, I love food too. To be honest, I’m realizing that’s partly what caused this. Seems like the pathogenesis of my disease is multifactorial. But one of the major factors is hyperglycemia and hyperleptinemia. I can say for sure that I have run high blood sugars for years even though I wasn’t fat. I gained 113lbs if muscle in 16 years. I was eating so much food to grow, god I wish I could do that over again. So I can’t enjiy sweets anymore. It’s beenn4 days of fasting and eating perfectly and finally my fasting blood sugar went from 108 to 98. I can’t eat chocolate anymore. Let me say, if you like macaroons and you’re ever in the states, Makarohn does an amazing job. I love food! It’s crazt to think all those years of eating Helped cause this. It’s hard to get older and have no choice but to change.

Same me goes for smoking weed. I have to change that. I can’t keep smoking like this. I’m realizing the sleep apnea is probably being made worse by the smoking. I didn’t realize how weak my lungs were. When you take the smoking, then add in the fact that I’m a muscular guy that isn’t working out. Man, I’m putting stress on my heart and lungs. I have all this muscle to supply with blood and my cardiovascular system cannot keep up. I need to start lifting regularly and HARD again. This isn’t a desire, it’s a requirement.

I’m sorry you’re doing so poorly. I’ve seen your old posts on here and I see you were gone for a while. That’s always a good sign. Although things are rough now, I think you have the tools required to get past it. May I ask, have you ever thought about getting another opinion on your eyes? Do you think anything has changed medically that it may be worth seeing a top specialist and see if they can offer you better treatment?

I was lucky to meet Jain at UIC. He has so many drugs at his disposal to help with dry eye it’s insane. When is the last time you were examined? I also understand that can be hard and frustrating as well so I get it. Just curious because I’ve been given drugs I didn’t know existed. And they’re working, so j wonder if here’s anything out there anyone could do to help you.