I won't get better

[CajaDeLaMemoria]

I saw the best consultant in Europe for my type of conditions yesterday.

He spent a good two hours talking to me. I had hoped he'd be able to guide me in a way forward, as I've been struggling.

Instead, he said he's looked at all my scans, test results, blood tests...and he doesn't think there is much that can be done for me. I won't get better. There is no cure, no real treatment. There may be in the future, if we understand my condition better, but nothing right now.

He's told me to fight through it, to nurture my brain and be glad that this hasn't affected my intelligence.

All I can think of is that my organs will fail, slowly, and there's nothing I can do about it. I'm 22, and if it continues at it's current pace, well...

I'm numb. I'm supposed to go on holiday tonight but I'm not packed, I haven't even thought about it. I was so convinced he'd have an idea, a suggestion, an inkling.

I feel utterly lost right now, and I just needed to get it out into the silence.

What is it you have Caja?

How awful, but you must enjoy life now - pack and try to have a good holiday.

I am sorry Caja :(

I cannot imagine how it must feel to be told that, it must be almost too much to bear.

Dying takes one hot second, and everything we do up until that moment is living, so live the best life you can.

When you feel up to it could you investigate any clinical trials or a different consultant?

Hello again. Just searched you, as I was sure I'd seen you before on other GH threads.

Is it RA? Confirmed?

A dear friend of mine has had RA for the past 20 or so years, and obv apart from the pain and the meds, he's truly fine. Still living his life and all.

I'm so sorry he couldn't offer
You better news. I hope you can find the strength to go on your holiday, will
You be with family or friends?

Thank you all so much. I feel a lot less alone now, although I've just had a big sob.

I have RA, fibromyalgia, chronic over breathing syndrome... But the clincher is a genetic autoimmune disease. It's attacking my kidneys at the moment, it looks like they will go first.

Holiday is with DP. He's lovely. I don't have family, which makes it tougher... I couldn't wish for a nicer partner though.

I'm trying to be all together and okay but I just feel like this is it. There's no future. I wish he hadn't told me. I thought I'd heal one day.

Then live as if you will, nobody knows for sure what the future holds. I hope you can enjoy your holiday.

Caja I have learnt a lesson this week - life is for the living hard to see now I know. How did I learn this, from a beautiful funny and generally marvellous girl friend who sadly on Saturday lost her nearly 4 year fight against bowel cancer. Through out this time she grabbed life by the scruff and shook it really hard sucking the marrow from every second. When she was having Chemo she would go to concerts in her non-chemo weeks and in one amazing week she saw Bon Jovi, Take That and Glee live.
As late as the end of April she held a 40th Birthday for herself in hospital and as for last summer she converted her corner of the ward into a one woman team GB support centre.
We all miss her 100watt smile, but the one thing we can be certain of is that she lived her life to the full.

This must be so hard Caja, I'm so sorry too.

I hope Mumsnetters can in some way help just by listening anytime. Sometimes it's easier to talk to people less close just so you can pour everything out and be understood without worrying eg about protecting your DP (so glad he is amazing).
I have realised that in a way none of us really know how long we have a future after a very dear 6 year old I knew became ill suddenly and it has unsettled what I knew as 'safety' in health but at the same time taught me to value every moment so much more than I was.

Thinking of you and your DP too and please please lean on us if can help in any small way.

Lonecat is right, take every day and rock it. I work with end of life children and young people and their never-ending loud message is to take life and shake it hard. Rules are made to be broken and doctors are sometimes wrong. I am not trying to diminish what you have been told or how you feel but I do see positive messages coming out of awful situations.

I hope you have a wonderful holiday.

Yes, have a lovely holiday Caja. (your name always makes me smile btw)

Lonecat, your friend sounds wonderful

Ah, Caja

What a hard, hard day. I don't think you could be anything other than numb and lost for a while, following that.

And then, I hope some of the thoughts on here help. And the holiday, and most of all the DP.

I too have an old friend with RA (since childhood), and he is in his 40s now. Pain is the challenge, but he is very much alive. With regard to the genetic condition, that sounds like the most scary of the bunch - but if any group of diseases are likely to be better understood in the next few years, it is genetic and auto-immune ones, so I hope your consultant's words will prove prophetic for you. I once had to have treatment for liver disease (ultimately terminal), where the odds of success were considered 25%, but was also given a trial drug - which within a few years was proven to increase that success to well over 50% (and I was a lucky one).

Things can and do change, but uncertainty is a hard one to live with. Support, and talking about it, can help - like lightening the load, which means you then have the energy to do what everyone is talking about

Sending big hugs and wishing you a restorative holiday - with extra hugs to pack.

Oh - and on the subject of packing - take a passport, a ticket, your DP, a credit card and clean knickers. A toothbrush. The rest is less important!

Caja, my ds was also given a very bad diagnosis early on with an autoimmune element and even confirmed with genetic testing, progressive & neurological. We see world-wide experts too.

I started on the premises that if there is something that makes him worse, then there could be something that could slow it down. After about a decade of intensive searching and reading I found a non-invasive way to stabilise him and slow down the deterioration - he recently passed his driving test. Doctors are astounded that he hasn't got worse the way they expected.

My late Mum used to say doctors don't know everything but I found it impossible to believe at the time, but she was right. Doctors are experts on the disease but don't usually look for the cause, just to make you temporarily better with meds.

I can share with you a name of a neurologist and his research who put me back on track and you might even find it interesting - I found it mind-blowingly fascinating.

So, enjoy your hols and get in touch when you are back. There are a lot of things you can try, so don't give up hope.

Just wanted to give you a hug Caja x

oh luv, I'm so sorry that you've been hit with this news. You've got a lot of grieving to do haven't you?

I have no idea about your conditions, but when you're ready, you can ask for cognitive behavioural therapy with someone who understands living with long term conditions. It won't cure you, but it will help you manage any difficult symptoms or any (completely understandable) distress you may be experiencing.

As other people have said, one day at a time. try and enjoy your holiday with your lovely DP.