Coping mentally

Hi everyone,

I’m in a bit of a state right now so will keep this short rather than ramble on…

I’m struggling really bad to cope with all of this mav stuff that’s come my way- esecually since my rapid deterioration since Saturday / since I started ami… I don’t know if it’s the ami or coincidence but my dizzyness is ramped up about x 15… My face and head pain is now mostly at 9 for most of the day and the tinnitus has also worsened.

I was struggling to cope before, now I’m a wreck. I don’t know what to do to stop myself from falling in on myself. I want to stop this spiral but I don’t know how because I feel and am so out of control of things, and I can not see a future for me at all. I haven’t worked for 10weeks and I’m scared I’m going to lose my job which I live- but I just can’t work right now I feel so awful. It’s like a bad hangover every day plus feeling drunk at same time.

I know you guts have all been through this and arebgoing through it. I just wondered if anyone can give me tips to psychologically deal with this? The future scares me and I’m currently sat on my floor in the hallway wrapped in a towel at 3pm on a sunny afternoon, contemplating my options.

Is there light at the end of the tunnel and how long is the tunnel?
Nobody else understands family or friends so I’m here.

I’m sorry to sound melodraric I know there are worse things in life. But I really need some hope and coping strategies… Thank you xx

Sweetheart listen to me - things CAN and WILL get under control … but it takes time… a lot of time and that is the hardest part to accept. I was where you are now. Trust me. I was nothing short of suicidal and told my parents I refuse to live like this. When things approached 3 months I was at my wits end thinking ‘how much more can I take?’…

I was so desperately ill. I was bed ridden for 3 weeks and housebound for 3 months. I couldnt do a thing for myself, literally not even eat dinner.

Since starting the Nori (and having some kind of acceptance surrounding this condition), things have improved albeit very slowly. I am so much better than where I was but am far from 100%. I am approaching the 8 month mark but some on here have been dealing with this crap for 20+ years!

My doctor told me ‘let go of any guilt you have surrounding your illness’. And that’s what I eventually did. I had to stop fretting over things I could not control (job, social life, my move to New Zealand - everything). I lived/loved my job too; with a passion and it destroyed me having to leave. Even though now I’m working 3 days a week, it’s for a different company and very low stress, easy role - but I’m struggling to even manage this much! BUT, I tell myself, 3 months ago I couldnt’ve worked 1 day in any job!!

I get very sad from time to time and cry like I’ll never stop. Then a few good days come along, my family cuddle me and tell me they love me every 5 seconds, my dog makes me laugh, my friends constantly check on me and I now have a boyf who tries to take my mind off things as much as he can… small mercies.

You will get there my friend. I promise but no point lying to you and saying it’ll be next week or next month - it wont be. Let go of the things you cant control or change and concentrate solely on yourself. Create a place of peace for you to live and exist in and get your MAV life in order with the diet and triggers. Educate those around you. Draw strength from those that love you. Lean on people. Lean on us.

Dig deep and stay strong xx

Missmoss,
Wow, muppo put it so well. I can only echo and say I have been to my knees begging for one day of normal…just one day to remind myself what I used to feel like. Now I am normal most of the time and get scared when I hit a bad day.
Quite a turnaround. It does take time to figure this out, but geez, I just think it shouldn’t be that bad if you are hitting the right brain circuitry for YOU. None of us has the exact brain issue going on, tha is why we all react differently to the same meds. It’s so hard not to try someone else’s “formula” since we are desparate for wellness, but it is so individual.
Does your Dr. know how badly you are reacting to the Ami?
Are you still taking the beta blocker? I know you said you were doing pretty well with it…my one doctor said you can get “destabilized” from a med…is that what you feel like happened? I felt that way after Lexapro, and then I just stopped cold turkey and was still needing a med, and now had a destabilization going n…it’s important to be in contact with your doctor…hopefully one that understands what you are going through. My advice is to work with a psychiatrist…they seem to be the best at this…better than Neuros in my opinion…more heart to them. Neuros tend to be more brainy and less compassionate…also harder to reach.
The meds I didn’t respond well to, I was told to stop taking them when I called my psychiatrist and told them I was a mess…which I was…they wanted me to stop and to try something else…just my 2 cents…
Kelley

It is very difficult to deal with this condition. I am so sorry you are feeling so terrible. I remember having a conversation with my mom quite like what Muppo said above, where I told her I just couldn’t live like this and had no hope. My mom promptly told me to find that hope because that was the only way I would get through this. Honestly, I was so frustrated for months not having an answer, that once I was diagnosed, I was so happy to have an answer it made a big difference in how I was able to take on each day, good or bad.

I think the most important thing to do is surround yourself with people who support you. The work stuff is difficult, I have a very supportive boss, but still felt like I was on thin ice and needed to get back to work soon. I made a concerted effort every morning to get up and get in the shower, and get dressed, no matter how bad I felt. If after getting dressed, I couldn’t comprehend going to work, I would call in. It is amazing how many days that though I felt terrible, I was actually able to make it to work (I take a train, I’m still not driving).

This is an isolating condition, it takes away a lot from our lives, there’s no denying that. I think it is important to look at the successes of others, find a doctor you have faith in, who understands this condition, and to understand that the medications take a while to work, and can frustrate you even more than the MAV, but it’s all about finding one that works for you, and that can be tough. You can get better, keep telling yourself that, multiple times a day – it will help to make you believe it.

Best of Luck,

Jessie

Muppo -
This post wasn’t intended for me, but the reassurance you gave was amazing. Thank you - you changed my way of thinking about this condition on a day-to-day basis. I have my good days, and I really worry when I have my bad days. I tell myself on my bad days that if I’ve had good days in the past, I’ll have them again.

i have had a lot of shit in my life but this almost takes the cake, you have to get the i dont give a crap about anything other than my health, accept for awhile you just cant do somestuff, its out of your control. its not day by day but months to months. People who havent got this wont fully understand, i can hardly understand it. Move when u can and lie down when you have to. I found hydrothreapy (walking in warm water)worked well but it closed down so try it. This vertigo crap is life altering.
i did my back, couldnt walk for 9 months ,still have problems but i survived & adjusted, it got a lot better and im walking again. Its what i can not what i cant.
Now this shit for 2 years i cope now by expecting nothing but im a bit better, (dr says i have it severely) your brain will learn to cope. Some meds made me worse so i stopped i couldnt cope, keep pushing drs and do what suits you. others here have got better so eventually we can too but you have to dig deep and accept some days are a write-off. Its easier said than done. You wont be normal if you didnt have days that you cant live like this. The dr dont know much( ithink) but info is power so learn what you can…this condition is f"d uped, frustrating and wears u down!!

Coping mentally is probably the hardest thing for me. I am a person who cannot accept not being able to do something. I strive to be the person I want to be, live the life I want to live and work towards having the life I want to have. I need to have control over everything to avoid anything that can knock me off track. I know that there are things I cannot control, but I feel I can handle anything and have never had anything come my way that I cannot handle …until the dizziness started. For the first time in my life, I had a problem I cannot control or fix, that has no answers and no definitive way out. To me, that’s my worst nightmare.

It hit me the hardest 6 months ago when i started having panic attacks and started to believe for the first time in my life that I COULDN’T do the things i wanted and WOULDN’T ever have the life I want. I was devastated! I wanted to jump into the river and swim until I couldn’t swim anymore. But I knew i didn’t want to die, I wanted to live! So i decided to go to therapy to treat the anxiety and learn ways to deal with the dizziness. It did wonders for me and I no longer feel like my life has been stolen.

I think the last and maybe hardest part of all of this is the mental aspect. Honestly, I feel pretty good most days and my bad days are no where near as bad as most people on here. But i struggle with thinking about how I am feeling all the time. I am all consumed with this condition and think about it constantly during good times and bad. Sometimes I think that maybe I am 100% but won’t let myself believe it. Maybe I forgot what 100% feels like? I want to be at the point where I never think about how I feel and am just comfortable even if I feel off, because you are never going to feel great all the time.
So that’s what i am working on and being positive really goes a long way. I don’t beat myself up over not feeling well and I know I can’t quit, so I might as well press on.

Thank you, thank you, thank you to Muppo and to everyone else who replied to my post. :smiley:

I’m not going to lie- it was hard to read and re-read the words At the end saying ‘you will get better, but no point lying to you- it won’t be next week or next month’. It’s hard to read because I know this, but it’s that part that I am having trouble accepting. I’m living day by day so to admit this is going to continue for as long if not longer than it already has, is tough. I want to accept it but I feel like shouting out loud to the big guy up in the clouds ‘Come on, help me out here! I just want a little bit of relief- give me a sign by just relieving maybe 1 random sympton a smidge!’

I also find it hard to accept because all I wanna do is get back to work- I feel the need for some normality back in my life, but in the same vein, I know that it’s too much for me right now. I’m scared they’re going to fire me, so I can’t relax about it either.

But nevertheless, I know Acceptance is important so I’ll try to make it happen.

Muppo, I’m sorry this thing messed about with plans to move to nz. That’s truely cruel. but I’m grateful that you explained how you felt because it really helps to know there’s another girl out there not too far away who has experienced the same thing, and the same emotions. It sort of confirms that what I feel is not unreasonable or over dramatic which I sometimes feel.

What you guys say about surrounding yourself with people who love you and support you… I know you’re right, but I don’t have too many friends, at least not too many good/close friends, and i find that I am finding fault in every one of them. My boyfriend tells me I’m being harsh on people and people do care, but I get stressy and find it hard to believe that someone who is sposed to be a good friend, gives a shit if they can’t even be arsed to send a crappy text message to say hello, you know? He tells me that maybe people don’t know what to say or people ask him how I am instead of me directly… Maybe he’s right, but I can’t see it just yet. Having said that, I know it’s hard for people to be sympathetic towards an invisible illness, but this thing certainly sorts the really good mates from the hangers on. I’m a party girl, you can always depend on me to be the last one standing, always up for a night out, getting into drunken mischief- since I one don’t go out and don’t drink, I find those mates disappeared. I guess a silver lining is that I found that some people I didn’t expect to show so much compassion and help, have done so. This also highlights the crap relationship I have with my mum who doesn’t have much of a compassionate bone In her body for me. That hurts.

So I need to accept and get out of this self pity party! And I’m insanely grateful for Muppos suggestion of leaning on you guys here for support. I whinge a lot and ask a lot of questions so I hope I don’t pee people off- I’m just looking to have as much info and knowledge to attack this horrible condition and one day throw it in it’s face and say Ha Ha Ha I beat you!

I also like the way Muppo says to create a place of peace and get the mav life in order. Muppo, you really seem to hit the nail on the head every time- thank you.

Kelley, Its good to read that you now feel normal most of the time with the odd bad day scattered here and there… I’m seeing my neuro on Tuesday. I think though, that he’ll tell me to persevere with the ami, and I will. But I feel like other people say, that I need something else too. Im still on a beta blocker but just 40mg once a day rather than 3 times a day which I got up to. I like it- it chills me out, slows things down, but it doesn’t seem to hit any mav symptoms other than anxiety.

Jessie, I really like your approach to work, but were there days when you’d get there and feel horrendous all day and feel unable to do anything? Or did you surprise yourself with being able to get through the day?
I have started to tell myself every day I will get better. I might write it down and stick it on the wall to remind myself- even if then everyone who visits thinks I’m mad :slight_smile:

becd- I feel your frustration! Thank you for your empathy. And I’m sorry you have this so severly, I really am. Hugs x

Deekon, I think we are similar in personality. I also am a control freak! And this thing certainly dances all over that. I also have no patience - I think that often goes hand in hand with having no control. What kind of therapy did you have? I also empathise with you saying ‘maybe I forgot what 100% feels like’. How do you a maintain your positivity?

Like I said, I’m really grateful for all your responses, ESP Muppo who has an enviable great way with words.

I know I’m still going to cry and stamp my feet about the unfairness of all this, and mourn the fun and mostly carefree like that I once had… But I’ll try to accept it and try to take on the suggestions you all gave. I’m not feeling very positive with anything right now so I’ll no doubt fail but it’s gone into my stupid brain so I will leave it to digest a bit.

Im really not a religious person but I pray that I find a tiny bit of relief some time soon, and that all you guys also have a few more good days rather than bad.

Thanks guys, xxx

There is some great advice here. When it comes to work, I am a paralegal and work independently for the majority of my day, so if I made it into work and to my desk I could manage the day, though the computer would make my eyes go wonky half the time. Don’t get me wrong, there were plenty of days that I worked from home, and plenty that I just had to stay in bed because MAV was winning. I think the best thing to do with this illness is to know your limitations, if you can’t go to work, then you have to stay home and take care of yourself – beating yourself up with only make things worse.

I also had a hard time knowing how to deal with friendships, I guess I just assumed everyone wouldn’t understand or care, and since they can’t see the symptoms, that they wouldn’t get it. I think this is all part of the condition, MAV robs us of self esteem because we can no longer do all the things we once did. Even if the symptoms are slow to abate, you will help yourself by having hope, and daring to think about enjoying things in the future, believing that you will one day feel well.

You will get better, hopefully soon, and like the other posters said, come here for support if you can’t find it elsewhere.

Also, being anxious and depressed makes me feel worse, so i try to get it out of my system fast. Not always easy, but it gets easier as time goes on. I know you feel like you will be sick forever, but you won’t. I am almost a year in now and can’t believe it’s been that long.

— Begin quote from “theogdenmancan”

Muppo -
This post wasn’t intended for me, but the reassurance you gave was amazing. Thank you - you changed my way of thinking about this condition on a day-to-day basis. I have my good days, and I really worry when I have my bad days. I tell myself on my bad days that if I’ve had good days in the past, I’ll have them again.

— End quote

Always here my friend x

I’ll keep my post brief as I really can’t say anything more, or better than what’s already been said. Just that you should rest assured that you CAN and WILL get better. I’m a success story, there are many more.

As for your friends. I’ve had the same thoughts over the years, saddened that they weren’t as supportive as I’d have liked them to be. But what I’ve learned is that my expectations of people aren’t necessarily objective or realistic. People do what they can, they often feel helpless, they also feel frightened and challenged by seeing you so ill.

Vic

Thank you guys- it’s great to read all your advice. I keep re reading all the posts to remind me that one day it will end. and that it’s nit just me who has crap friends. Thanks again. Xxxx

Excellent posts here! I dont post very much but i do read many posts…this one really touched me. This is a difficult disease as we all “look well” the mental game can be very difficult. I agree with muppo…find your peaceful place and be kind to yourself. Surround yourself with positive people and have patience. We will all have good and bad days. I for one am so grateful to have found this website. It helps to know that we are not alone in our suffering

Re reading this post when feeling pants,is great… Thanks again guys xxx

Thank you all. This is the first time I’ve read this thread and while it’s not directed at me, I have a very warm and positive feeling from reading all your encouraging words. :slight_smile:
Cat

The mental aspect is perhaps the worse thing about the disorder. The utter frustration of not being able to do the things you love as people around you travel ,work etc And I have found friends patience runs thin after 3 years a if I’m making it up when it crashes yet again. I know exactly how you feel. I think the only way is to take one day at a time. Understand its a bastard disease that plays cat and mouse so don’t be fooled by it . Keep if you can trying other drugs . i know most of they make you feel like shit ditch that one and after a rest try another after a rest of course. At some stage, you will beat it . Ironically , I have friends have cancer and recover and i’ve still got this disease. I’ve got friends who have got phd and I’ve still got MAV.