LUPUS UK
21,145 members16,753 posts

Admitted it

Yesterday i saw my consultant at guys where i broke down for 2hours and cried till she cried with me. She told me i have been in denial about my illness i have fears my mother died of scelerodema.. i have sle lupus antiphospholiped raybauds cerebral lupus for 2 years i have fought hard wishing it would somehow go away... i don't want to end up like her. I am so depressed lately. Words in my head came out through my mouth. I told her at times i just want to die... at times when i can't hold a cup of tea or squeeze toothpaste or get dressed without feeling so much pain i just want to die. I feel so alone just me n my son who at 12 is my carer.. i feel angry n guilty. Keep throwing up blood and everytime i look on the mirror i don't recognise who i was... who i am..

they say fake it till you make it but i am so tired of faking it

31 Replies
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Hi avionne,

I'm sorry to see that you're so down at the moment. Do you have a good relationship with your GP? I would recommend making an appointment with them and letting them know how you feel at the moment. They may be able to provide some additional support for you. If you have a close friend or family member that you can confide in then I would recommend it.

If you need to talk, obviously, please continue to use this forum, but please also get in touch with us if you'd like somebody to talk too as we have contacts that have lupus themselves so they can understand and are there to listen. And just in case you need any additional support, here's the number for the Samaritans - 08457 90 90 90.

Keep in contact.

Take care,

Hayley

LUPUS UK

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Thank you hayley i appreciate it that. I will definitely call.. my gp and i have a good relationship but i go thru one minute talking the next i close up and deal with it in my head.

My family are overseas. My dad visits but doesn't want to about it

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I'm the same Avionne, when I feel poorly I clam up & hope it will pass soon. I guess its a kind of coping mechanism.

It sounds as if the consultant was understanding, have they got a plan of action with your treatment?

Big hugs

X

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Thank u so much at the moment recommended counselling n upped my pain relief

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I hear you Avionne.. Been there. Hang in there. Hayley has some sound advice.

You are supported by all of us on here. Big hugs and love

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Aww thank u so much

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I'm do sorry you feel like this

Don't be alone

I lost my mum dad I have aps Hughes syndrome rheumatoid arthritis and fibromyalgia syndrome plus lupus and heart murmur and now being tested for multiple sclerosis

Email me xx

Ritawakley@hotmail.com

We chat don't feel alone I've gad terrible few days u have gad double pneumonia and pleurisy 3 times email me and ill support you xx

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Sorry to hear about your loss... and thank u ur kind

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I know, I know, I know, terrible disease this. Unpredictable, isolating, and scary.

What's your treatment at the moment? Doesn't sound like it is working that well if you're in so much pain!

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Hi i am on mycophenalte, amitrypline, warfarin for pulmonary embolism, planquenil, pregabalin, quinoric, morphine etc

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I have read your post several times before adding my bit to it. I can totally empathise with you. I too got to a point I didn't want to live. I went through this dreaded disease for 10 years alone, isolated and scared with no support and very little understanding of what was happening to me. Now I feel the fear and do it anyway, as the saying goes. You really need to talk to your gp and get some psychological support to help with your fears etc..

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Thank you... i hope ur doing better...

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Am great now thanks and realise life is worth living and am very positive

You will get through this enjoy what you have. This site is such a big help as your not alone. Email me anytime let me know how your doing xx

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.s think you and your son could do with some quality time. Like a holiday, there are charities that provide them

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Just googled a few charities the are grant funded. Do apply. Great for wellbeing for both of you.

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We definitely need a short break together but money is a bit tight

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Do you not have a social worker or support worker who can get your holiday pa ckage put in place ?some charities sort respite will find a few for you to contact. Yes money is tight can understand that, you both need a bit of a boost for wellbeing..Think your son is brilliant at his age being your carer,would help his wellbeing too.I will try to find some charities for you to contact. Sometimes a short break is all you need to uplift yourself again.

Regards

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No hunni don't have social worker or support worker... seeing my gp next tuesday who called because my lupus consultant called her to see me next week urgently

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Will definitely tell her to refer to social worker

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please follow Hayley's good advice , we have all felt like that some days,

keep strong Avionne

you are not alone xx

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i will most definitely

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Thank u all...my consultant spoke with prof d cruz and they said i need to see a psychologist and take anti depressants. They believe that a percentage of my pain can be related to depression and upped my pain relief. They will be writing to my gp...

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Good to hear your getting support.my psychologist became my best friend x

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Avionne - You are NOT alone! We ALL have Lupus and many other autoimmune diseases. My Dad died at 67 from Lupus hitting his vital organs-heart and kidneys. I try and play tennis 4 days a week and swim and activity will fight it! You CANNOT just sit down and let it get to you! Talk to us -- tell us what you are feeling - we'll laugh with you and cry with you - and we all have a tough life. I will say it again : YOU ARE NOT ALONE!

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You all are brillant i feel a bit better strange i can express myself better here

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Denial is a word that usually has a negative connotation. The one thing I would mention is that everyone is different and chooses their own path. There may be some SMALL + that you can find today. It is good that your 12 year old son is able to be your caregiver. Maybe, there would be a way to "give him some time". Nature adds some positives for me. All I need is to be able to look outside. Is there a window to sit by?

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Hi everyone i'm ok think i needed to have that mini melt down as we all experience it's hard putting on a brave face all the time. if i could hug ALL of you i would... i really really thank all of you for your words of encouragement

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Sending hugs xx

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I am sorry to hear of your frustration

I would like to suggust a Nutrictionist I know you may not think it could make a bit of difference ... But if it does wouldn't it be worth it ? Food sensitivty could agravate your condition and not even know it ...

You don't always feel sick ....Listen to dr Amy myers

You can utube her

Leave no stone unturned

I know it not A cure but if you can slow down the activity and flares you could catch your breath

Listen on utube if u too tired to read interviews from doctors who offer different ways to help yourself

I never stop looking ... There is a way

Educate yourself on latest treatments

If insurance allows go to physcial

Therapy and get massage

If dr allows ....

Eat clean

Gf

And limit sugar

It all causes inflammation

That part of the pain

Just advice of what has helped me

I hope you consider

Many people swear by this

Take care and be well

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Xx😀😀

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Avionne - As I said before - you are not alone. I am going on 4 years since initial diagnosis. I sure don't look the same either. I used to look 20 years younger, but when you are sick so much, it takes its toll. I still push myself to be active - we take cruises but don't do very much, and no more 30 day cruises or and tours or even flying. We take 7 or 10 day cruises and we try and keep to our normal routine. Yes I get "sick attacks" all the time, but I try to enjoy what I can, when I can. I do not have a good support system. I have none from my children. I have grandchildren that my daughter-in-law denies us seeing because, in her words, my son is a "husband and father and has no time for a sick mother." It's been one year now. It seems that I feel less stress not having to deal with her than I did when our telephone calls and Skype were "monitored" by her. Yes it's sad - but that's why I say - we all have to push on. We also appreciate the support we get on THIs site!

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