How do other people handle family/friends that dont 'get it'

Hello

I have had this since 2009 now, constant 24/7 dizziness and sometimes worse symptoms like feeling extremely faint/vertigo etc. I briefly tried Propranolol recently but felt so tired and more lightheaded on it so i gave up, might have to try it one more time before seeking something else though

Anyway to the point…my mum made some comments recently about me not doing enough stuff with the kids, i have 4 children, two of which are 8mths and it’s hard to leave the house without it taking 2 hours to get ready let alone me not feeling well…i don’t know what she expects of me sometimes…

I guess i don’t tell my family how bad my MAV symptoms are because whenever i have atttempted to in the past i got comments like ‘try not to think about it and i’m sure it’l pass’ or ‘do you still get that?’ or ‘eat what you fancy, obsessing makes you anxious’. It’s just easier to not go into it sometimes.

I don’t want people thinking i am boring or dont go out enough etc but not sure how to handle things sometimes, what do others say/do?
Even my partner does not seen to get it at times, he said i seem in a world of my own sometimes in the middle of the road but it’s not, it’s me trying so hard to concentrate!! :cry:

How do you others handle family and those close?

Hi Dee,

I’m sorry you are struggling with being understood. I wish I had a useful answer for you. I posted something similar a while ago and would be very interested in any other tips to help those who love us understand better. For me it is the hardest part of this awful affliction that we are not only going through hell a lot of the time but also that so much goes unnoticed. It’s very lonely. Short of going ‘Woah !’ every time I feel the ground move or myself falling or my surroundings moving or strange things in my vision (which I would be doing every few seconds sometimes), I don’t know how to make people around me aware of it. I try to appear to be normal as much as I can but it’s a very boring version of myself and my life is very limited. I am also a mum and work full time so it takes all my energy and concentration to just keep functioning.

But fair play to you! You’ve raised 4 children with this and looking after twins is difficult enough for any mum. Bloody hell, so what if you don’t go out so much any more like some exciting super mum. You are chronically ill and need to do less, not more. I’m sure you have protected your kids from the impact of all this as much as you can. Can your mum help you to do more if that is what she thinks you should do? Would anyone dare say such a thing to a man I wonder. You are probably a really great mum but you have to look after your own health too and in the long term your kids are going to need you keeping well enough for the years to come, not knocking yourself out and making things worse.

I hope you find something which helps you. I also had no luck with propranolol but a small improvement with pizotifen. I hope someone else can give you more advice on educating family members but in the meantime please don’t let it get you down.

All the best,

Nicola

Dee
I’m amazed you even get out of the house at all with your twins!! You are a fantastic mum and don’t let anyone tell you any different. Children need love above and beyond anything else and am sure they get that from you in bucket-loads so please don’t let anyone put any guilt on you. If they were in that same boat they would more than likely want to be waited on ‘hand and foot’ let alone looking after a family!!
When I first got sick an ENT guy who thought I might have Menieres handed me a ‘package’ of info to read. Amongst the stuff was a DVD - very explicit with all the nasty symptoms that came with it. I wish there was one showing how debilitating MAV can be with all the ‘visuals’ like the rocking, spinning, vertigo, etc. etc. maybe our nearest & dearest would be able to understand more of what we actually go through 24/7.
Pity your husband still doesn’t ‘get it’ though - you really do need that one person to lean on sometimes when it all gets a bit much. I must admit that I go through times when I try and ignore my symptoms and not say anything as I hate being dependent on anyone but have found that my husband actually prefers me to tell him when I’m feeling really off and let him ‘take over’.
Barb

Thank you ladies, your replies mean a lot, at least people here understand me :slight_smile:
Today i feel slightly better (got a good nights sleep) If only we knew in advance when we would have better days and we could plan to try to do things etc but it just doesnt work like that.
We are going away for 4 days on the 19th, our first break for a long long time so i hope that i can relax and enjoy it even though taking 4 children on holiday can never be totally relaxing!
Thanks again, reading your encouraging posts does really help when i get low :slight_smile:

Dee – the only way to handle this is to educate them. They need to read some of the information here on the forum – you could start by printing off the easy-to-read articles such as the one linked under the Survival Guide.

S 8)

This article is written by the Doc that I see in Sydney and he is brilliant!! Also the article is concise but covers every little little bit on VM except he could have added the use benzos for anxeity though maybe he might be one of those docs that does not believe benzos are useful for short term relief of vestibular symptoms. i have never discussed this with him and use benzos occasionally secretly without his knowledge. LOL

Scott,

Wish I could “like.” Like:)!

Lisa

Hey Dee

Sorry you’re feeling like this. But my god, you’re doing so well to cope with 4 kids. So well!

Just checking in to echo what Scott said- I copy and pasted the MAV survival guide, with a link to it, to my friends, family and co-workers. And I highlighted the bits I wanted them to pay most attention to and the bits that were the ones that most affected me.

It DEFINITELY helped some of them understand. Especially my parents.

Friends- unfortunately I lost a lot. My ‘best frien’ is getting married in April and I just found out through someone else that I am not a bridesmaid. It sounds quite playground, but I got really upset. If it wasn’t for MAV, I don’t think we would have drifted apart as much. But I have drifted from a lot of friends, seeing as they don’t seem to really understand MAV/VM and the limitations it brings. I actually count some people I’ve met here through Mvertigo as much better friends than some I have known for over 10 years. We pick each other up when the others are feeling down and share mav-ing experiences.

At least we understand each other here as you say. Always here to lend a MAV ear.

x

I’m lucky that my family gets it, but I do have to tell them when I’m not feeling well because this thing can be invisible (like when a big storm blew in a few days ago and I had to tell me husband I didn’t feel well enough to go to the park with the kids - even for a few minutes before it started raining. And not well enough to go and “just sit on the bench” with him).

It’s hard with strangers because you really don’t even want to get started explaining and have to leave them wondering why we’re so weird. I had a rough time in the grocery store a few days ago. I had to be a bit rude negotiating my cart through the crowded store - cutting some people off. During check out, a gallon of milk fell off the conveyer belt and broke on the floor. I didn’t feel well enough to react except to step around it (while the staff acted like it was the craziest thing to ever happen). The checker said “Geez, I didn’t know it was our fault”. I may be dizzy, but I can hear.

I don’t know how you guys get through this without family support. When I was really sick for months and housebound, I learned which of my friends were really friends. Not very many but the ones who came over just a few times, I’m really grateful.