An inner ear dysfunction is a tiring business

Edited , 5 users are following.

For anyone that reads my stuff my intention is not to come across as negative person but simply to share my experience of how the effects of a balance dysfunction can take its toll on you.

My wife is the best and she is so supportive. Today I am particularly proud of her as she did the Bristol 10k in just over 60 mins, shaving 20 minutes off the last time she did it in 2011 and to be honest I am a tiny bit envious.

The reason I am envious is not because of the run itself, but because all I can do is watch from the side lines, but it’s not really watching from the sidelines that bothers me, it’s having to idly stand. This process of idly standing seems to physically and mentally fatigue me. My brain is clearly working its nuts off to keep me upright, and it seems that even if I have something to lean on this only offers a small amount of relief.

The only time I seem to be free of this fatigue is when I am sat down and it’s as if my brain breathes a sigh of relief and says it’s ok, the old boy is sat down.

Today was particularly vile for me as I was on my feet practically all morning and if I am honest it feels as if I’m getting worse. I am getting travel sickness while standing, how ridiculous does that sound? and now I am writing this while sat on my couch with all the feelings of someone who has just been to the fairground.

The reason I know I’m getting worse is because I also did the Bristol 10K in 2011 (2 Years after VN was diagnosed) and although at the time I remember feeling not too great, I did get through it. I just don’t understand why I feel worse 3 years later. Is it because I am sat on my backside at every opportunity? Is it because I’ve given up on exercising (because it makes me feel sick)? I jumped on my treadmill the other week and that made me feel vile for about 4 or 5 days. I went out on my bike the other day and that also made me feel vile for a day or 2….. or is all this just a compensation process I am still going through?

I think I am going to give up on doctors, I’m gonna try a vet instead. A few months ago my cat was very ill. He didn’t tell me he was ill because cats can’t speak, but he looked so ill so I took him to the vets. He didn’t tell the vet what was wrong because cats don’t talk to vets either but the vet was able to fathom out what was wrong and after 10 days the cat was fit and well again.

…..and if the Vet can’t help, I’m gonna ask my mechanic who always good at fixing my cars.

Anyhow tomorrow is another day !

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  • Posted

    Hi Darren your not negative in what you say, telling how it is for us ,to every day dealing with it constant it is no let up.stops any day you would like to have.As you said to do that run your wife's just completed ,and you've done yourself  in the past.

      To go about your day like most people do,you no longer can.You take each day as it comes,with the hope tomorrow will be better to you,outside Drs you keep looking for an answer out of it yourself.Dont think one can give up.same for any illness Darren.

       You do make sense in what you write,always make interesting reading on your thinking it out.and how it sets others thinking.Got to be good for people on this site. 

      I didn't realise how big an issue this condition was till I got an I pad truly didn't,but i do now,and to hear others views on it,and I now know several around me with it I didn't know suffer with it,opened up my eyes that's for sure.

        The bit about seeing a vet regarding the balance,why not they train longer than Drs.maybe you've hit on something go ask .

        Your so young to have this,glad your wife's good support,that goes a long way ,my husband of nearly 48 yrs is good,helps me out a lot,his tinnitus doesn't give him a balance problem ,but me could easily be him tomorrow. That's how life is,it's learning how one copes with it the hardest I've found ,as do others on site. Your hearts in a good place Darren that's what counts. XX

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  • Posted

    Aww Hun you aren't negative! We ALL feel like you. I've only been suffering for 6 weeks yet it feels like forever. Standing is exhausting to me too. We went to a camping shop today and it was horrible for me. Floors all uneven, weird lighting and I just couldn't wait to get out of there. I really thought I was going to collapse at one point! 

     

    The only respite I get is when I sleep, I wake up stupidly early every morning anxious as to what the day will bring. It's a horrible, debilitating thing to suffer with. People can't see it so don't understand how ill we can feel at times. We just have to take each day as it comes, good or bad. If you feel you are getting worse go back to your dr and push to see ENT again. Or find a private physio who may be able to help xxxx 

     

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  • Posted

    Dr's actually told my son they didnt know what was wrong with him. Found our own help after a year of being sent from one to the other, i think its the VRT its excersises any way and they are working thank goodness. good luck
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    • Posted

      about 6/7 weeks dizziness almost gone and eyes almost back to normal. he was one of the worst they had seen,had  been in bed for 4 and half mths before getting there. can even stand on one leg now and walk on a line which he couldnt do. still a way to go, and feels awful at times and always tired but progress thank god. this is a 35yr old roofer so a fit young man and always on the go normally.

       

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    • Posted

      It's interesting to the ages Jenny's son another young one.Beggars belief.

       I've had mine 3 years every day,like Babz it's waking up knowing another day with it.certainly keeps ones stress levels high,that can't be healthy for anyone long term,Glad I've got no youngsters to care for ,don't know how these parents cope,as I do a bit sit down ,and so day goes like that. I find to go shopping in evening better,keeps it short without standing to long at checkout,but not everyone with children can do that when there in bed..

         This is why you need good family support around you who understand this isent you by choice.

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    • Posted

      i think the problem is GP's think people are putting it on in beginning, but when they look  so very ill they should understand. Our GP's just dont seem to know about it and even the ENT said nothing wrong. Unbelievable. Hope things improve for you

       

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    • Posted

      It's got to be tough,trying to raise a family with it,Drs don't understand the,ramifications on family life,more so if children are involved.they still want a well mum or dad. It wants a dr to have it,who sees a patient with it to understand what's been said here or better education in these med schools,think in the States they've began just that from a video I've recently seen..Maybe your be one of the lucky ones it will just go as it began hope so  xx
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    • Posted

      I really hope so. 6 weeks and I've had enough! I know I'm luckier than some as I'm not vomiting and can eat and still get out and about to a certain extent. But I'm woozy from the minute I open my eyes to the minute I close them and at times it REALLY gets me down. I get anxious a lot too. My kids have been amazing but I've had to stop work for now and defer university exams. I just want to feel normal again and do things with the kids without feeling constantly spaced out! Xxxx 
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    • Posted

      I'm with you on the anxiety side of it,the brain tells you one thing but your body won't accept it,I don't get the queasy bit either,but lots do think people wih Menieres get it,same as if people with Migraine. Some do some don't another bad condition to live with they get balance trouble also but again not all.its a mystery the brain as my dr said short while ago to me.its so complex an organ.You will get.backto normal,just matter to when.your children sound a good bunch to have around ,give you lot of TLC I'm sure ,my daughter does me and she's all grown.makes a big difference to your day when it gets to much.chin up hey this we all hope is as bad as we get it.then the reverse steps in one way or another  us today someone else tomorrow sad as that is

      xxx

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