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AIBU to want to rage against the universe?
673

5YearsLeft · 01/12/2021 12:18

Sigh. I know I am. But this is shite. This wasn’t how it was supposed to be.

Obviously namechanged as I haven’t told anyone of this except DH, therapist, two best friends, and my stuffed platypus.

I turn 38 tomorrow. I wanted children with a husband I love so much it hurts. He’ll be a great father. But he’s probably going to be one after I’m gone. Because my doctor tried to confirm to me an hour ago, since I joked it off at my last appointment with him, that I’ve got roughly five years left. Also, I’m an idjit for taking a doctor’s appointment the day before my birthday. They’re always shite news.

And maybe I should be grateful, because I know a lot of people get a lot less time, but it’s not “good” time. It’s already been NINE years of wasting away from the person he fell in love with (DH, not the doctor - I mean, maybe the doctor’s yearning for me, but seems unlikely), in pain constantly, losing myself, trying every medical option, even leaving my home country so we could come to the place with the best medical care (I would be dead already without it, to be fair - even the NHS can’t do everything).

And DH is also in love with my best friend. Who came over to help take care of me three years ago. So I already know he won’t be alone when I’m gone. It doesn’t even hurt anymore. I can’t have sex anymore in any form; it’s too painful. And I don’t want him to be alone when I’m gone. I’m just… relieved she’s here. For maybe six months I felt jealous but it’s so far away now. And I know how much he still loves me. And will until I’m gone. But I know he also needs someone to bear this sadness with besides me. This is all just so fucking horrible.

I don’t know what you do when even your therapist says it’s all horrible and you’re brave. I mean, the therapist is helpful but… who can tell you how to die? I just keep listening to my favorite songs on repeat and crying. This is not exactly a magnificent end.

I just want to rage. I want to scream at someone. I want to stab the universe for the life I almost had. That I had for a few previous years before I got sick. And it’s not that I don’t know how lucky I am, to not die cold and hungry or in a war zone or alone. To have “everything” I need. But I’m so tired. I’m so tired of the pain, and I’m afraid.

I can’t travel because of my condition (veins will kill me), but… what would you do with five years left, with no travel? And if anyone has advice on how to stop being so angry, I would appreciate it. Truly appreciate it.

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oftenbaffled · 01/12/2021 12:20

What is your condition? I am so sorry

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oftenbaffled · 01/12/2021 12:21

Your doctor actually said to you that you have 5 years left?

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bibliomania · 01/12/2021 12:48

Rage all you want, OP. Bloody hell. Go out and break all the dishes or something. Can't blame you for overwhelming rage right now.

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recklessruby · 01/12/2021 13:10

So sorry OP rage all you want. I m raging at the universe too just now for my own reasons and last night it helped to cry and thump cushions etc.
I hold it in all day at school but it comes out sometime.
Do you have anyone close to vent to apart from the friend and DH?
No advice but this world can be bloody shitty at times cant it?

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Theunamedcat · 01/12/2021 13:16

I'm so sorry feel free to rage all you want

But practically speaking

Is it flying you can't do or any travelling at all? In five years I would want to cover shetlands Scotland down via Ireland East and west coast ferry to France drive as far south as I can get and back again

If not what about virtual travel?

Fucks sakes life sucks

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MorningStarling · 01/12/2021 13:24

If not what about virtual travel?

I was going to suggest that too. Seriously, flying a plane in "Microsoft Flight Simulator" with a powerful PC and a top VR headset is an unbelievable experience. Literally the whole world is mapped out, you can "visit" anywhere.

It's not the same as real travel obviously. But if virtual travel is the only way, it is better than nothing and a lot better than most would expect.

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Choirgirl2021 · 01/12/2021 13:53

You are going to sing, that’s what. Sing out everything. You have 5 years of life left in you.

It seems cruel to make you focus on how fortunate you are compared to others in your current circumstances but ironically, it works. Focusing on what you have rather than what you haven’t got does seem to create a mindset that is more positive. Even though immediately it might not seem so. What’s your list, OP? When I was ill I decided I wanted to learn the flying trapeze and I did (badly🤣)

Also, are you going to spend these 5 years worrying about an adult man? He will be ok, you know this.

What are your plans? Come on, get ready. What are you doing this afternoon? Where in the country are you and we can send you suggestions. You cannot travel far but you can sing. Get that music going and take it everywhere with you. There is a list on here if upbeat tunes I started and others added to - I will try and track it down.

Got to go to a meeting and when I come back I want a list. 🙂

Harsh? You know the worst. Now, I think is time to focus on the best. Get living. Really living. Fuck the rules.

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5YearsLeft · 01/12/2021 14:02

@oftenbaffled Well, doctor is Italian with a REALLY strong accent and I’ve tried to develop a fairly light-hearted relationship with all my doctors despite how serious things are. He said (roughly), “I know you make jokes, which is nice,* but I don’t want to be the bad doctor who doesn’t help you prepare. I will be with you until the end, but I would not make plans for more than five years. You understand?” I understood.
*He also says nice a lot to mean: nice, pleasant, fun, funny, humorous, and a few other words.
I was a little shaken so I called my GP, who I saw 2 weeks after arriving in this country, and he’s agreed to stick with me all the way through EXIT if we end up on that road.

Also, saying my exact diseases will definitely put me. Suffice to say, I have two conditions, both auto-immune; one attacks my veins and the other attacks my muscles. So I will either die of my muscles failing so I can’t breathe in oxygen, even if I have all the oxygen in the world, or my veins will fail, and I will die of a clot. Both conditions have been getting significantly worse every year since 2017, and have taken a rather drastic turn down this year. I have no appetite. I’m losing 6kg a month. I feel horrific, and just want to sleep.

For those going through anything that requires rage, @recklessruby, please join my Universe Rage Club. It’s open to all.

@Theunamedcat Good point; I can’t fly and get exhausted by trains (muscle failure). I could handle driving maybe in slow stages so maybe a good idea. I don’t know that I’ll ever be able to get back to the UK but I’m still in a beautiful country for slow driving travel if I’m able.

@MorningStarling Really interesting about Microsoft flight simulator. I hadn’t even thought of that. Will look into it. Thank you!

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HerRoyalHappiness · 01/12/2021 14:09

I've no advice but rage away. The world is cruel and unkind and everything seems so unfair. So rage against it, be angry, let it all out.

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bibliomania · 01/12/2021 14:10

Is there anything on your bucket list? Tell us what you would like, even if it seems out of reach, and maybe people can come up with alternative ways of doing it, like the flight simulator.

Ever wanted to streak across a football pitch?

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Tal45 · 01/12/2021 14:11

If you can't fly what about taking the channel tunnel or getting a ferry? Are those possibilities or would it be too much? If too much then what about travel in the UK - Snowdonia is just amazing, the very tip of Cornwall is so beautiful (love Porthcurno and the Minack theatre), Dartmoor, Wardour castle, London has a million things - there are some pretty amazing places to see in the UK.

Personally I think your DH is just adding to your unhappiness, how can you feel happy when he seems to have already lined your best friend up to move onto when you die? I don't know how reliant you are on him but I think you've got to start thinking of yourself and what you want to do with the time you have left. Start planning OP.

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girlmom21 · 01/12/2021 14:21

Oh OP I don't know what to say.
I don't want to say 'I'm sorry' because that's what everyone says and it's just shit. It doesn't help.

What are the things you've always wanted to do?

Is your friend living with you?

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5YearsLeft · 01/12/2021 15:46

@bibliomania @Tal45 @girlmom21The three of you all have a really good point: perhaps focusing on what I want to do, making a list or something, is not exactly an antidote for the anger, but at least a way to feel a bit more in control. The truth is I’ve been so exhausted and in pain that I’ve spent the last 2-3 years in bed reading and sleeping it feels like - the disease that causes my muscles to fail, in particular, makes it so I can only really “expend” energy for one day and then I need a big day of rest.

But knowing that limit, my other limits, I could probably put together a list based on them. I used to be a photographer and there’s so much I still wanted to see and photograph, even if I couldn’t really travel. Maybe just document the next five years, even if there’s some raging involved.

It’s difficult to think. I can’t even make a list of my favorite foods to eat because I now vomit too easily unless I eat only small, bland amounts. (I used to eats tons of Mexican food!)

And tal45, I do understand your concern with my unhappiness. But it’s a really difficult situation to understand until you’re living in it. We desperately needed a third person to support us, and now we just happen to have a three-person family. It’s odd to outsiders for right now, and in five years, they’ll have a two-person family again and it won’t be. But I would be so much sadder and more unhappy without her here.

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bibliomania · 01/12/2021 15:58

I can totally understand why having friendship and love around you is the right thing - who cares what outsiders think.

A photography project for the next 5 years would be a pretty amazing thing to do. It's you saying "This is me, 5YearsLeft, looking through my unique gaze at this universal experience and this is what I see. "

I don't know if you've come across WNP Barbellion's Journal of a Disappointed Man. He was a scientist who died in 1919 and knew he was dying. He wrote:

"To me the honour is sufficient of belonging to the universe – such a great universe, and so grand a scheme of things. Not even Death can rob me of that honour. For nothing can alter the fact that I have lived; I have been I, if for ever so short a time."

The part of you that is I/eye - can you hold fast to that part of your identity? Take those photographs.

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bibliomania · 01/12/2021 16:03

I'm sorry if I'm being trite - this stuff is easy for me to say. This might be a better description of what I'm trying to say about Barbellion.

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jamie85 · 01/12/2021 16:27

'Rage Rage against the dying of the light'
Is a poem written about a man talking to his Father. The last three lines are
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

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jamie85 · 01/12/2021 16:30

Will you show your man these posts?
Getting the sub lined up is a bit off.

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FlipFlops4Me · 01/12/2021 16:41

Is there an equivalent of the Marie Curie nurses where you are? They are wonderful and will have advice that we don't.

I had cancer (twice) and can always remember being told not to look back, and not to look forward and mourn for what I might not have, but to enjoy every single moment I can of today. Great advice. Even though I'm in long term remission I carry that advice with me and try not to take the days for granted.

Think of things you can do besides think about possible endings for yourself - even if you're too tired to do anything could you listen to the books you always wanted to read? Zoom call your friends and keep up with their news. Make bucket lists of different things you want to do but split it out into what you can do on a fairly reasonable day, what you can do on a fairly bad day etc.

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Choirgirl2021 · 01/12/2021 16:56

Have you exhibited your images, OP?

Would it be possible to work with a student who could do the physical work so that you could focus on another part?

rps.org/

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Choirgirl2021 · 01/12/2021 16:56

Or a website of your work?

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CloudyStorms · 01/12/2021 16:58

Rage away OP, it's so unfair x

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Choirgirl2021 · 01/12/2021 17:30

Oh yes to the rage. Your post sound so together, I couldn’t write like this (and apologies if my post sounded too blunt but I read yours and thought you seemed to have great insight and from that, an ability to manage your perspective). What do you want to do now, OP? Let it rip, here. xx

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Knitter99 · 01/12/2021 18:27

Did you post before about your platypus? You take him into all your hospital appointments and you were looking for some repairs or replacements? I can't quite remember. I hope you got sorted.

To answer your question, if I personally had 5 years left and couldn't travel I would make all my practical arrangements then I'd sew or knit lots of things. I would think of everyone special to me and make something for them, a big quilt to wrap themselves in when I'm gone. I would use them to leave as much of myself as possible in as bright colours as possible in the world.

But I'm not you and maybe that's too hard for you physically, or maybe you just don't fancy crafting. It's not for everyone.

How could you use your photography in a similar way? Arrange an exhibition of your photos?

Tell us what speaks to you and I bet we can find a way to make it happen.

I'm not going to question your relationships, so long as they make you happy. If they don't make you happy don't be scared to admit it and move on. You still have life ahead of you to live as best you can.

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5YearsLeft · 01/12/2021 23:04

@Knitter99 Er, yeah… it’s me with the platypuses. I’m obviously complete shite at name changes and will not be spending my last 5 years doing them, rofl. (They did not need replacements! We fluffed them up a bit, they dried out, and everyone survived!) But what you’re saying, what I can leave behind. You’re able to knit (it sounds so beautiful, so bright, how you describe it) and I can still take pictures. So maybe the pictures are the brightness I can leave behind. Admittedly, not quite as cosy.

@FlipFlops4Me I’m not sure about the Macmillan nurses or someone like them here. I see my GP tomorrow (horrible infection) so I may ask him. I know we’ve talked briefly about palliative care and I’m not sure if that kicks in when we reach the two-year mark (I worked in a hospice that defined palliative care as two years left and hospice as one year or less) or just certain parametres or you just need a “we can see the light and it’s not a train” diagnosis.

@bibliomania I really, really like that quote by Barbellion. I think I’m going to tape it next to my bed. Thank you Flowers

@jamie85 I don’t know if I’ll show this to DH. I already discussed how angry I was about it all with him in the past, but he’s so opposite to me, so Zen, it can be difficult, and I didn’t feel like I came up with an answer. Maybe I’ll come up with one now from this, and just start doing it.

@Choirgirl2021 You’re absolutely right, though. My husband WILL survive, and is probably the best-suited person for it that I know. He will not be some grief-stricken spouse they have to watch for a few weeks, no matter how much he loves me. It’s just not how he’s built. So it’s really about what I WANT and how I FEEL. And yes, as long as I’ve been sick, I’ve always tried to psych myself up with the song by Goldfish “Get Busy Living,” which has an adorable music video about suitcases, of all things, to go with it.

For those wanting to help me plan what travel I can do… I’m in Geneva. I needed a treatment weekly (immunoglobulins) and it has to be subcutaneous (this is newer than doing it intravenous so much more expensive) because my veins are so bad, so it costs almost $10,000/week. Our insurance here covers it, which is why we came, as the NHS was obviously having a hell of a struggle and I don’t blame them. In Switzerland the insurance is expensive but they don’t say no to almost anything as long as your doctor explains why. And it’s not really expensive at all compared to what I cost them a year which is… staggering. For comparison: you could buy a 2- to 3-bed once a year in most towns (not London) for what I cost them. And I’ll need the treatment every week until I die. I came to Geneva , with no idea I’d be unable to leave again and then when the DGPs that raised me both died in the last year and I wasn’t able to go to either of their funerals, I think maybe that’s when the rage started building? Or just was suddenly there and so huge. I only grieved for such a short time, and then… it was like the grief receded like a wave, and just left this hurricane of anger just churning in its wake. I’m sure a lot of people have felt like that about loss, maybe?

Problems my disease causes that limit the bucket list:

  • arthritis-like joint pain (I can operate a camera, but I can’t sew, paint, do coloring books - I tried) / you should see me type on a phone I use my fingers completely straight and the thumb from one hand with the second finger from another hand
  • I can’t walk too far, but I do have a wheelchair
  • I can’t eat foods that have much fat in them (this is a mystery; we don’t know if it’s all the drugs I’m taking or some kind of damage from them but I vomit and vomit if I eat more than 9g of fat in a meal; they checked my gallbladder but no stones, and I’m too I’ll to just have it removed)
  • so… I can still write and I can still use my camera (I have a lightweight hybrid) so it seems that may be the direction I go in…
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VillanellesOrangeCoat · 01/12/2021 23:22

Your writing style here is engaging, @5YearsLeft. Maybe you could write about your life, what you’re experiencing and feeling, alongside your photography?

Anger is a frustrating emotional state to be in. Understandable, and sometimes necessary, but frustrating nonetheless. Go with it. See where it takes you creatively maybe.

Can I send you an unmumsnetty hug Flowers

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