It just got so real!

[Diana21]

Can I just vent? I know this site is more for medical information but I know this is the only place that can at least try to understand this rush of emotions I’m experiencing right now.

I just dropped my husband off to see our favorite artist and I’m a mess. For some reason that made this illness way too real.
Backstory is that I won the tickets when participating on a raffle about a month ago, I never thought I was going to win front row tickets to such a big event, so when they announced me as the winner I was super excited for him but from the get go we knew I wasn’t going, the lights, sound and crowd would make me a mess and I much rather have him have a good time by himself that be worried about me having an attack there.

He asked a thousand times if it was ok for him to go alone and even said he felt so bad about me not being able to go but I said it was ok …I swear I was fine until he got out of the car, that’s when I lost it and started crying …I miss my old self & it makes me so sad realizing that who knows when we’ll be able to do the things we loved to do as a couple. I’m so scared of this condition and the unknown that comes with it.

I know it sounds stupid and that’s why I decided to come here to vent instead of telling a “regular” person. Sorry about the vent

[flutters]

No, love, this is a SUPPORT site. This is the place to vent. It’s ok to cry. It’s ok to be mad. MAV is such a horrible burden. It teaches us many things and it ultimately makes us better humans. But damned if it doesn’t suck. Maybe I’ll cry with you. We all need that.

On the concert front, I wear earplugs and sunglasses, sit as far away as possible and am generally very high on a rescue med (fioricet and compazine) or cannabis. Even then I expect to be a mess after. Next time love. Go next time.

You will get there. Normal? Maybe not. But you don’t have to expect MAV to shut down your life. You will get to the point where life is fun again.

Cry and rail. We’re here. We understand. We love you.

[Diana21]

@flutters thank you! You are amazing

I think I need to prepare myself mentally to risk it and then deal with whatever consequences come after …I don’t want MAV to rob me from living a life, I’ve already skipped a few movie dates with him and the kids as well because I’m just so scared

[flutters]

Fear is worse than MAV. Might as well live.

[LucyLabrador]

I so hear you… MAV really changes lives, I feel like I’ve become a different person since I became dizzy. But even dizzy we’re still entitled and able to live a good life, it’s just that it looks very different (with more pauses and rest - life in slow motion in a way) from what it used to. I found I had to grieve (a lot) before I was able to see what life did offer me. Be kind with yourself and give yourself the time to cry and grieve. Grieving is all the more complicated that we’re probably not going to be unwell forever, so we’re grieving and at the same time we need to nurture hope. Complicated mixture!

[Onandon03]

Feel free to vent away as much as you like. MAV’s very hard on those afflicted and that goes for partners too. ‘Others’ just cannot understand the restrictions it imposes. One sister-in-law suggested at the week-end that a holiday walking coastal paths might be something I’d enjoy. And there was me thinking she liked me! ‘Others’ think getting out and about is essential for us but that’s not always the case. It’s best not to make lists, even mental ones, of all the events you have to miss. Too depressing. I‘ve missed many family events over the last five years. Everything except a Family Wedding but that’s only because there hasn’t been one. I get where you are coming from.

just dropped my husband off to see our favorite artist and I’m a mess. For some reason that made this illness way too real.

The first one is always the worst, it gets easier. But don’t worry it. It won’t be ‘for ever’. Meantime once you have vented do try to adopt the ‘Glass Half Full’ attitude. You dropped him off so you drove. You are well enough to drive, be glad. Worse one I missed so far was the arrival of the new baby niece. With severe photophobia there was no way I could leave the house on one of the hottest days of the year with walk to walk blue sky and sunshine. I couldn’t have reached the car yet alone coped with the hospital lights. He went and I stayed home, In fact she was five months old before I ever set eyes on her. But I’m not like that now. ‘Baby niece will be three next month. Things do improve. Best not to dwell on it … adapt The Cup Half Full attitude and keep smiling.

Personally I’m all for the Trigger Avoidance part of the treatment. I see no point in being ill for days after attending a trigger-packed an event. Eight days in bed after a couple of hours eating out is for me a very poor return but each to their own. Helen

[Diana21]

‘Others’ think getting out and about is essential for us but that’s not always the case

When he was getting ready his mom called so he put the phone on speaker and I heard her ask if i was really bad that I couldn’t go with him He’s just as frustrated as me when it comes to how insensitive people can be, explaining to them over and over the severity and weirdness of this condition and they choosing just to ignore everything so he was like “yeah mom, she is just fine and just wants to miss front tickets to her favorite artist of all time” I love that man.

But anyway I’m still so new to this that I really don’t know how I’m going to react that most triggers, maybe my fear is making it a bigger deal than needed and maybe one day I’ll learn how to deal with that but for now I’m all for trigger avoidance too, for example what really stopped me from going to the concert was the thought of the tinnitus after, it’s normal to have ringing in ears after loud events specially concerts, my tinnitus is already too annoying on a regular basis so I just didn’t want to even think about how bad it was going to be after

[flutters]

Earplugs - best thing ever, except for Theraspecs.

[Diana21]

Maybe I’ll try the earplugs and take my girls to see lion king since I already skipped Aladdin and toy story …I’ll make sure hubby is there too just in case lol

[flutters]

Have sunglasses. Sit center back. Consider a prophylactic beforehand. Mine is meclizine (Dramamine, bonine). For rock concerts that gets ramped up to fioricet, compazine and/or cannabis. Things get a bit fuzzy around the edges, but I get to live my full life. Otherwise unmedicated I saw Avengers Endgame last week. Did I catch all the plot points? Well, no. But I was otherwise fine in a 3-hour movie with an overdriven soundtrack and enough visual noise to have utterly destroyed me a year ago. There’s hope here.

[Janb]

we knew I wasn’t going, the lights, sound and crowd would make me a mess and I much rather have him a good time by himself that be worried about me having an attack there.

It is good to vent especially to those who know what you are going through!
I feel for you! Last year when I had just been diagnosed, we had booked a 2 week holiday - before it all started - which included tickets to see Romeo & Juliet at the RSC in Stratford Upon Avon. I was struggling to cope with the idea of a holiday anyway - the packing and organising things were defeating me, but we got there. The time approached for the Stratford upon Avon leg of the holiday and with trepidation we went to the performance. Unfortunately we were right at the front -touching the stage - and to my dismay in the first 5 minutes the setting for the first scene was a disco and everyone was jumping up and down on the stage in front of me with flashing light and loud music. I lasted 20 minutes and then had to leave making everyone stand up to let me out mid performance, swiftly followed by my husband.
The RSC were brilliant, they came over to see if I was okay and suggested that we sit in the bar and watch the rest of the performance on the screen, but I just wanted to escape and recover my senses - literally.
Since then I have greatly improved and have managed the RSC twice - making sure though that I wasn’t so close to the stage and having ear plugs and dark glasses to hand just in case.

what really stopped me from going to the concert was the thought of the tinnitus after, it’s normal to have ringing in ears after loud events specially concerts, my tinnitus is already too annoying on a regular basis so I just didn’t want to even think about how bad it was going to be after

My tinnitus is 24/7 and gets louder if triggered by noise, stress, bumpy car journeys etc, but I find I can ignore it now and it didn’t seem to be any worse after the RSC performances - even the disastrous one! However, if I thought it was going to make me dizzy again then I would not even think about going to a performance - play, music etc as it just isn’t worth it. Jan

[AntofBlackpool]

Hi Jan. I’ve been to the rsc that many times I almost live there. I usually sit on the first balcony (doesn’t matter which theatre) on the end of a row, so of I have to go I go and don’t interfere with the actors of any audience members.

[Janb]

Hi Anthony
Sounds the same as us - we practically live there too. We have often been in the stalls but not that close to the stage - I had booked the tickets before becoming unwell, but even if I had felt fine the seats were not very comfortable. Too close and too noisy! Jan