Family only making me worse - Fibromyalgia Acti...

Fibromyalgia Action UK

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Family only making me worse

SallyE15 profile image
6 Replies

Does anyone else feel completely abandoned by family or like they think you can switch off symptoms to suit them?

My family are part of the stress that reoccurs regularly to never let my life settle down and constantly change the goal posts.

I live with my parents again and seem to be stuck here until my pain and medication is brought under control.

My father struggles with a self inflicted knee pain (his own goalie landed on him in a football match 15 years ago) and all the world revolves around that as if noone has had pain as bad his knee ache. He's been told his knee cannot be fixed without replacing the joint eventually but must be managed in the meantime and he said its his worst nightmare. He takes cocodamol and ibruprofen gel and has an ice pack. Thats it. I said 'so your pain doesnt make you sick, cause "fit" like episodes or make you feel like you cannot get out of bed. His answer is no dont be ridiculous why. I said thats a basic description of my pain on a daily basis.

He keeps telling me getting into a daily routine of my old normal work schedule would make me feel better. That was 9-6 minimum over 6 days a week mobile massage and beauty therapy, carrying massive massage tables in and out of my car. Its not possible, if i was based in one place it wouldnt be half as bad but still a bit out of my reach energy wise.

My parents decide when i am allowed to struggle and be in a low mood and if its not in their alloted time then i get rollocked as if i put this on when i want to be a melodramatic reality tv queen or i am a toddler wanting a packet of sweets in the supermarket, not a 27 year old wanting her life back but stuck in a viscous cycle. I get up after an hours sleep throughout the night and have heard them arguing about some nonsense and before i even sit down they start on me about something. Whether its my fault the nhs are so slow organising an mri for me or that i am a lazy miserable cow who loves to be the centre of attention and happy doing nothing with my life.

Only my friend rebecca sees what they are doing to me. They are two faced to me. The minute neighbours start commenting on my condition they have my side but within seconds they are ganging up on me again. I never know whether i want to go home or visit my grandma who although doesn't understand fibromyalgia she does understand me and know i am not right and am so depressed and at the end of my tether as i am still waiting for medication to work, appointments to happen and somebody to finally say right i'll get you sorted!

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SallyE15
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6 Replies
trekster22 profile image
trekster22

Could you live on your own with someone coming in to help you cook or doing things you struggle with?

My family vary from having a problem with my wheelchair to pushing it when mums not looking. They didnt even beleive me until i showed them a diagnosis and claim physios arent real doctors.

i prefer to live on my own with some home help than live with mum she nags me about showers.

SallyE15 profile image
SallyE15 in reply totrekster22

Afraid my long winded journey finding my diagnosis has involved seizures and episodes where i've not been meant to be alone. My best friend becky doesnt live in town otherwise believe me i would have found a way to cope on my own.

TheAuthor profile image
TheAuthor

Hi SallyE15

I am so genuinely sorry to read this and I was also going suggest that you could possibly find a friend to move in with until I read your reply to trekster22. Have you ever discussed your situation and living conditions with Social Services? As they may be able to help you by finding you a room in a shared house house or something similar? As there are many ladies (for whatever reason) who cannot live at home and need the security or living with like minded ladies like themselves.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

Would you qualify for sheltered housing? Maybe it would be worth discussing things with your GP, Social Services, local Council/Housing Association and even the CAB. Obviously you can't go on as you are. Living in this sort of environment can only add to your stress and make all your symptoms worse. You need lots of TLC not constant arguments and battles on a daily basis. Hope you get something sorted out soon. Good luck x :)

kellums88 profile image
kellums88

So sorry to hear how hard your struggling, family can be really hard to explain things too.

Looking in to getting your own place if you can as you need to be relax and comfortable for you medication to work, alot of things with fibro etc are made alot worse by stress, I feel for you as it's hard to get people to understand how you feeling.

Remember too look after you and I really hope things get sorted xx

Since I got sick, my family has been pretty much AOL. I don't think any of them have even Googled Fibromyalgia. My brother does call about once a month. Out last conversation ended with us arguing. He said I need to see my one year old grandson even if it means having to be in bed for two days after my visit. He does not realize that I already spend 85% of my day in bed due to fatigue. If I were to die in my sleep tonight, no one would know for about a month.

People love to give advice, even about things they don't understand. I understand they want to help but most are too lazy to even learn about our condition. I have had to tell my brother not to call me as often because when he ask me how I'm doing I have no good news for him and all he hears is me complaining. They have no idea how hard it is to get through each day. The last thing I need is more stress so I have distanced myself from most of my family. Yes I am more alone, but I would rather be alone than being stressed out.

Best if luck to you.

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