Misunderstood

Yes, we have been somewhere very like where  you are. So we relate to each other. We can and do sympathise. By contrast, It is so difficult even for those in the same household to understand what this ailment is really like. We don't look ill. We may even be complimented on how well we look. Hard though it is we have to accommodate to their difficulties in understanding. Their accommodation to us seems to them one sided. They carry life's practical burdens of work, shopping and keeping the house running as well as the social interaction with family and friends. These are all things we would like to do but cannot. Plus it goes on and on.  We need to love them for all they do and forgive them their healthy life style and their difficulty in understanding the reality of our incapacity.

Hi tiki.

Sorry to hear you feel so awful and we do understand even though our families and friends can't always do so.

Do you have a sympathetic doctor?  Have you asked for a referral to see a specialist or run tests to check your bloods etc

Do you live in UK?  You may be able to claim benefits so you have your own income and even perhaps move into a foyer or rent a room if you need your own space.

I know it's hard to do anything about anything when everything is all too much anyway but they may be positive steps to improving youir lot.

I wish you well.

Hi tiki, bad dau huh? Especially on Valentine's Day when if you do not have a partner you are reminded of it.  Interestingly, I have been testing my blood pressure recently and thought it was good.  Thank goodness cos my heart rate isn't at times.  However, my blood pressure has only ever been tested lying down or sitting.  These were positions that my heart rate would mostly be ok.  However, when I'm standing upright my heart rate becomes Sinus Tachycardia and it appears my blood pressure is very low therefore upsetting my heart.  This is the reason I need to keep sitting but preferably laying down.  It's not just to rest but to keep my heart and blood pressure heathy.  This could be the same for you therefore the reason u can give to your brother?

If you are in the UK is your household not valid in requesting for a bigger house due to your age not allowed to be legally allocated the same bedroom as your brother?

Maybe a course of antidepresents might help you?  Depression is a strong part of our symptoms.  I have to be on them or I can head towards suicidal thoughts.

SOunds like you have to get out of the house at times to get your own space.  A local library with some comfy chairs?

If you get a bit of you time most days you will find it emotionally easier to live with the others in your house.

Good luck

I will write more whan I have more energy, but felt I had to say something. You have an awful lot to put up with, this illness sucks and just remember this you are amazing.

hi Tiki

i can't say any more than what others have said but this forum at least shows you tthat you're not alone and it can help to vent! Ask your doc to refer you to a CFS clinic if there is one in your area as they can help you to learn to manage your condition. I wish you love and peace x

"im just depressed like him."

Sounds to me like you're being a bit dismissive of his problems.

Sounds like a difficult situation, but hope that you find a way of both being kind to one another.

Could you get disability benefits, there are a lot of ME websites that have advice about that, you would be better off living alone, my family are exactly the same and id probably be feeling as bad as you if i had to live with that level of crap, oh happy valentines day x.

Hi dear. You can't and shouldn't believe what he says cause he doesn't understand. Maybe you can take a walk to get away when he is bothering you.  Is there a friend or close relative where you can go for a few days like a vacation.  Put headphones on and listen to some music when he is around.  You could even buy some ear plugs.  They work cause I snore now with damn menopause and my husband uses them and he says they work like a charm. hehe  xxoo Good Luck dear 🍀

Hi tiki92

I am sorry to hear about your situation.

In my opinion this must be a living nightmare surrounded by family in such close proximity, no bedroom of your own, no privacy and being bullied by your brother when you are so ill?.....regardless of what mental health issues he has...it is not acceptable!

Everyone who suffers from this type of illness deserves some sort of sanctuary where they can have a peaceful existence....you do not have that and you need that to get better!

Get in touch with Adult Social Services and ask for an appointment to discuss your

situation as soon as possible your GP will have this information!

I hope you can find some peace very soon

 

Most of the people here can sympathise with your situation. It is very distressing when those around you think badly of you. It nearly destroyed my relationship with my family. They all thought I was lazy and selfish and kept telling me to get over myself. I'm lucky because my family have come around. All I can say is that there is support here when ever you need it. That's what forums like this one are there for. We all help and support each other.

I hope things improve for you and that you understand that you're not alone. We are all here.